Adventures of a One Year Old Micropreemie.

April 30, 2016April 30, 2016 MalachisMom7 Comments

As I sit here in the living room in a sea of toys surrounding me I sigh, life is good. No, it is not always easy or glamorous, but it is meaningful.

Malachi is taking a nap, and that means I get a few minutes to take a breath. Yes, the dishes need to be washed. Yes, there is loads of laundry to do. But that all can wait. Right now I want to just watch you sleep, and take you all in. Every piece of you.

Just this morning, as Malachi and I were playing, I had soft music playing in the background. It was a song from the praise baby CD that we use to play every night and most days while we were in the NICU and special care nursery. It immediately took me back to that tiny room. So many emotions flooded my heart.

I would play these songs, and sing them over my sweet Malachi. At night I would play them to drown out the beeping, and commonplace noises that rang throughout those hospital walls.

Your room was always adorned with bible verses, and prayers were written on the walls. Even when I couldn’t touch you, I could sing to you. And so I did.

I sang those words…

“You created my form, and knew me long before I was born. I was made to praise you, I was made to love…made in your image, and wrapped in your love.”
“Make me an instrument of your peace. I want to know what it’s like to follow you. When men look at me, I want them to see the light of the world inside.”

Day and night, you were covered in sweet songs of worship and prayer. And even today, I sing, and I pray these words over your life. You were made to praise. You were made for love. You were made for greatness Malachi. May you be used as an instrument of the king. May you always follow HIM. May men see the light of the world in and through you…

What a different place we are in now that you are home.

The NICU had such a way of slowing down life. Plans didn’t matter. Nothing really mattered, except that your heart kept beating.

April of last year you were so close to coming home.

You were finally off of your oxygen. Ironically, you were drinking from your bottles like a champ, and gaining weight. You still had scary moments where you would drop your heart rate, turn blue, and cause your nurses to run frantically to your room. Yeah…you were really good at getting all the attention. And yet, there were still a lot of unanswered questions.

In fact, it was in April that a particular doctor came in our room and started a conversation I will not soon forget. In her attempt to prepare me for what to expect once we got home, she looked me in the eyes and said the following words…

“Your son will have cerebral palsy.” Period. Not he “might” or there is a “great chance.” No, he WOULD have cerebral palsy (which she didn’t clarify that cerebral palsy could be very mild, to severe and debilitating). “He will be delayed.” “We don’t know what the future will look like for him, or what his quality of life will be.” “You need to understand this.” She was blunt. She wanted me to wrap my mind around it…as if I had not already played these possibilities in my mind a thousand times prior.

And so without responding, I stared at her. I honestly didn’t know what to say. This was the first time she had ever taken care of Malachi. She didn’t know him, not like the doctors that had been there from the beginning. She was just stepping in, going off of what the brain scans showed. Her honest medical opinion.

I was still going to love him. Nothing she could say would make me not love him. But to speak as if his life would not be one of quality; I didn’t understand that.

Love is not determined by ability. Love is an innate quality that a mother has for her child. Was I scared of the future? Absolutely. But also, in the very core of my soul, I knew that God allowed Malachi to survive for a reason. That even if he never talked, or walked, or did any of the things she claimed he would never do. That he would still be valuable. Loved. Cherished beyond all belief. That he would be just as loved and his life would be just as meaningful as the star athlete, or the child that is at the top of his class.

When she left the room I began to cry. I didn’t want her to see it, but her words ripped at my heart. I immediately began to pray out loud in that tiny room. My mother was in the room, agreeing with my every word. “Lord, touch Malachi. We claim healing over Malachi. Malachi’s life will be one of purpose. We praise you Father. You created Malachi, you formed his body. You created his inmost being, and you have dominion over his life. Lord we speak life and purpose and greatness over Malachi. We pray that he will never know a single day apart from you. We praise you father for bringing us this far. We praise you Lord for where you are taking us.”

Over and over, I claimed deliverance over Malachi. And yet, time and time again Jesus answered back with discipline.

It was through this discipline that full reliance in Christ and trust began to be birthed in me. And I needed to trust God more than ever in these moments. I had to be still and know that Malachi was in the very palm of His hands, even when I couldn’t feel him. Even when God felt distant.

That although multiple surgeries, medications, and therapies were not something that I wanted to be a part of my sons life, they would be. And I am accepting these things. Even when goals, EIP (early intervention program) evaluations, and numerous doctor appointments make me feel like I am drowning, I know these are all just small hurdles in the grand scheme of things. That all these things that seem like set backs, are indeed actually just propeling us towards growth, healing, and greatness.

Malachi will not be defined by any diagnosis that is placed on him. Not by an intraventricular hemmorahge, or Periventricular Leukomalacia. Not by delayed speech, oral motor weakness, extreme prematurity, or hypertonia. These things are all a part of our journey, but do not dictate or determine where we are going.

As my husband always says…”it is what it is.” But we won’t let worry steal us of our joy. Although at times our minds can be filled with questions and doubts. Although from time to time we may plea with God, “Lord, I don’t understand,” we won’t let our fears suck out or have province over the happiness in our lives. While they might be there, they will be less intrusive.

We won’t let the “what could be” hinder us from reaching beyond our present limitations. We have always believed in Malachi and his abilities, and we will never stop rooting for him.

And while joy and pain will often bleed together, we will cling to Romans 15:13…

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”

Lord, let us overflow with hope for the future.
So what does life look like for this sweet rambunctious one year old? It is certainly an adventure I tell you!

No two days are the same.

And while mornings are often filled with snuggles, grins, and giggles, and nights offer the consistency of bath time, play time with daddy, and prayer, all of the little moments in between, no matter how challenging or unpredictable, are beautiful nonetheless.

I often get a lot of questions regarding Malachi’s eating. And to be honest, these are the questions that are the most challenging to answer. There is no one reason that Malachi has difficulty eating. It is a combination of habits and conditions that make eating one of those very necessary and often times frustrating hurdles we have to work through.

I can’t tell you how desperately I want to be the “normal” mom that can just whip out a bottle to feed my baby. Or to be able to give him bits and pieces of my food without worrying that he will gag and eventually vomit. But this is not my reality. However, I will say we have made HUGE strides in eating in the past few months.

A couple months ago Malachi was getting 100% of his calories from his gastric tube (mini button). He was vomiting multiple times a day. He was only taking a few bites of food (which he despised doing). Eating was miserable for him.

In combination with the UNC outpatient feeding therapy, and starting Occupational Therapy, we have seen a SIGNIFICANT increase in the amount of food Malachi is eating. He is experimenting with new textures, and table food, and he is vomiting much less frequently. He actually enjoys eating, which is a place that I thought we would never get to. He still cannot tolerate certain textures, and he has just started understanding the concept of chewing food, but we are seeing progress, which is exciting!

Malachi has also started drinking from both a sippy cup and a cup with a straw. The problem is, he doesn’t drink nearly enough for us to try to wean him from the gtube just yet. Due to low oral tone, Malachi does have a little bit of spillage when he tries to drink, yet another challenge. But, the more Malachi practices eating and drinking, the stronger his oral motor skills become.

Feeding issues are frustrating beyond belief, and many people do not understand the complexity of feeding issues among micropreemies. How can something so pleasurable, be so unenjoyable for a young child?

A large amount of oral aversion among micropreemies stems from having negative oral experiences. From the time they are born they have tubes in their mouth to help them ventilate their lungs, and feeding tubes inserted into their noses and mouths for nutrition, which cause great discomfort.

Many micropreemies suffer from severe reflux due to their anatomy, and often low core tone. For Malachi, we couldn’t get him to eat (or drink) until he was comfortable…aka, not vomiting and retching 10 times a day.

We also discovered that Malachi has slow gastric emptying. Therefore, he was never given the opportunity to “feel” hungry. Malachi is now on a regimen that includes being fed overnight through his gtube, and then only two times during the day (during naps), giving him the opportunity to have an empty belly, and thus “feel” hungry during the daytime.

He has also been started on a medication given 3x’s daily to increase his gut mobility, and he is also on a medication for reflux. We eat 3 meals by mouth a day and snacks. These meals include some table food, a pouch of baby food (3-4 oz), and then as many sips of liquid that he will take. Malachi is also receiving donated breast milk, which is MUCH gentler on his tummy than formula (and it is also great for his growing brain).

These are the supplies that we use for our morning medicine routine.

This particular morning Malachi ate a whole 4 oz’s of yogurt, a mum cracker with peanut butter, a few bites of baby food, and a few sips of milk. I was very proud!

Sometimes Malachi likes to “help” give his morning medications. Silly boy.

Overall, if we can get Malachi drinking larger volumes, we could try to get him completely weaned from the g-tube. But this is a marathon, not a sprint, and we delight in any and all progress that he is making. He will get there, I truly believe he will.

Until then, we are so grateful that Malachi has a route to get all of the calories and fluids that he needs to grow and develop. To us, it has just become a normal part of our lives. Eat your breakfast, get your meds, flush the tube, and go play. 🙂 Sometimes “different” can seem intimidating and scary, but for children who depend on such equipment-it truly is a blessing.

In terms of therapies, Malachi receives Occupational therapy twice a week for an hour in our home.

I remember how frustrated I was in January when we had his first OT evaluation. Malachi had just turned 9 months adjusted, and he scored as if he was a 6 month old in terms of fine motor skills. As a parent, this was a tough pill to swallow. Discipline. This was just another page to our story, and something Malachi was going to have to overcome. And like the hard working child Malachi is, he has made absolute leaps and bounds since starting OT.

Our goals when starting OT were that Malachi would be able to drink from a straw, put a toy (like a ball, block, etc) “into” a container, bang two cubes or blocks together/and or clap (bilateral integration), and begin to use a pincer grasp (finger and thumb) to self-feed. We have officially met ALL of our January goals since starting OT, and have new goals that we are working on. But let me tell you, it has been quite the journey.

I remember crying in my room while holding Malachi one evening. It was early March, Malachi was 10 months adjusted age, and he wasn’t imitating. He wasn’t meeting his OT goals, and I was at loss. I worked with him every single day, and I wasn’t seeing progress.

And yet, little by little, Malachi began to blossom. Within a month Malachi went from sporadically waving, to consistently waving bye-bye, from not having the hand eye coordination to bang blocks, to consistently banging toys together, and putting toys into containers, and even feeding himself puffs and other small table foods with his fingers. It was during these very lonely times, when I felt defeated, that I reached out to friends that had similar circumstances. I just needed to hear the words “I understand” or “I have been there.” Let’s face it, special needs parenting is difficult at times, but therapy, early intervention, and covering our children in prayer truly does make all the difference.

I’ve gotten to the point that when I hear the word “delay” it triggers something in me to work harder, to fight a greater fight. I try not to let it discourage me, because I see the leaps and bounds Malachi has made. “Baby steps, Allison”-I tell myself. Micropreemie baby steps is what it takes.

Just the other day, Malachi started clapping out of the blue. It may not seem like much to you, but I remember a time when I never thought Malachi would imitate, or clap. He has come so far, and it is just amazing to watch his determination. And yes, we let him get very messy when he eats!

Malachi also has started pointing at everything. From pictures in books, to the wind chime outside, he wants you to share in his delight of discovering this great big world.

Currently in OT, we are working on putting objects into smaller holes (shape sorters, pegs into peg holes), stacking blocks and rings, continued improvement in drinking and tolerating textures, and putting large piece puzzles together. Always something to be working on. Always…

And while some of these skills seem tedious, they are each very important in building skills for everyday living and those skills needed for going to school. Each skill builds upon itself, and eventually will be needed to more difficult things like coloring, writing letters, and using scissors, etc.

In terms of Gross motor skills, Malachi is starting to stand alone a times, and take a FEW steps.

Here he is being very brave…

He will walk while holding your hands, but he is SUCH a fast crawler, he isn’t all that interested in walking. Due to some of the high tone in his legs, our PT always says that he is going to be quite the runner one day. We are also practicing getting from a squatting to standing position on his own.

We are so blessed to have such amazing therapists. We have been with Jean for so long now, she honestly feels like family. She has always believed in Malachi and his capabilities, and has pushed Malachi beyond his limitations. It is therapists like Jean that make all the difference in a child’s self-confidence.

Along with our in home and outpatient therapies, we still have regular follow up appointments with our Neurosurgeon, the NICU follow up clinic, Gastroenterologist, Audiologist, Pediatric Surgeon (G-tube), Pulmonologist, and we recently added a ENT (because of Malachi’s frequent ear infections).

We won’t be evaluated for speech therapy until Malachi is closer to two years of age. Although the only words Malachi says are “dada” and sometimes he sounds like he says “hey,” he babbles, giggles, and lets his needs be known.

I will say that Malachi is doing very well in developing his receptive language (words he understands). In fact, his receptive language is probably right on target for his corrected age. He understands who his mama is, and he will “give love,” “wave bye,” and lay his head on your lips for “kisses.” He knows several simple commands like “Malachi go get your ball (or truck, car, etc)” or “Malachi let’s eat.” Many micropreemies, and especially boys are delayed in expressive language, and our neonatologist tells us not to worry just yet. I can’t say that I always take her “do not worry yet” advise, but I do pray over Malachi’s communication skills daily.

Malachi also has a harder time with speaking due to his low oral tone. At times it seems like he wants to say “mama” but he can’t quite get his mouth muscles to cooperate. Sometimes it seems to frustrate him, but my prayer is that with time these skills will come. And until then, we will work through them.

With the weather warming up, Malachi enjoys being outside. In fact, he just lights up when a tractor, or school bus drives by, and he loves to explore all the new sounds and textures around him.

He also has a love for reading books with mommy, listening to nursery rhyme songs, and playing with anything that has wheels. He is so inquisitive. Our physical therapist always says he is going to be an engineer one day, because he is so intrigued with the little details of toys. For example, he will flip over a large toy with wheels to look at its parts, or to figure out how it spins. It is pretty comical at times how hard he seems to concentrate when he is playing. He will hold his mouth open, and look so serious when he is truly inspecting a toy.

Like most one year old boys, he is very busy and into everything. He loves to completely empty his diaper bag out, or any drawer with clothing, or the kitchen cabinet…anything really…

So busy.

Baths are his absolute favorite of all time…

And even though he loves his mommy, he is also pretty crazy about his “dada.”

And while life seems to be flying by a mile a minute, I try to take a few moments every day to just thank God for the opportunity I have been given to raise Malachi.

What a privilege I have as his mother to be on this journey with him. To cheer him on, and watch him overcome obstacle after obstacle.

I share so much of our journey with you all, because I know so many of you that feel invested in Malachi’s life. Maybe you gave to our family while we were in financial strain in the NICU, visited, or made us a meal. Maybe because you have followed our journey from day one, and feel like Malachi is a part of your family as well. Maybe you are a special needs parent who just needs to know that you are not alone. That there are other parents out there that feel just as clueless and hopeless as you do at times. I get it.

Whatever the reason you continue to follow, I appreciate you. I appreciate being heard. I appreciate your continual prayers over Malachi’s life. Over his future.

I will continue to sing praises over Malachi…for he was indeed “made in HIS image” and “wrapped in HIS love.” Let us not go a single day without covering our children in prayer.

Some days our present circumstances may seem confusing, and the road may be difficult to navigate, but we celebrate this life that we have been given with our son. This beautiful, messy life.

A letter to my son on his first birthday.

December 29, 2015December 29, 2015 MalachisMom3 Comments

Dear precious Malachi,

My world stood still the first time I laid eyes on you. In fact, if I close my eyes I can still see your fragile body just as vividly as I could a year ago.

This image always stands out in my mind when I feel worried about what the future holds for you. I think about how far you have come…the mountains you have overcome, and the progression we have seen.

God has certainly had his hand on you from the start.

It always amazes me to think that the God of the universe heard our pleas and cries, and choose your life to spare.

A year ago I couldn’t touch you, or talk too loudly in your presence. Instead, we filled your room with whispers of lullabies, and quiet streams of tears as we pleaded with God to save your life. With every odd and statistic telling us that each second may be your last, we stayed by your side. We believed in you, even when a reality of a life with you seemed unrealistic and unattainable.

With each new diagnosis, including an intraventricular hemorrhage and resulting hydrocephalus, our hopes of a future with you seemed more bleak. And yet, after 6 weeks on a ventilator, 137 days in the hospital, 2 brain surgeries, 1 abdominal surgery, and what seems like a thousand barbaric eye exams, needle sticks, and doctor appointments later…here you are!

It is with so much gratitude and grace that we celebrate your first birthday.

Time has been so surreal this year, with those early days in the NICU seeming to drag on so painstaking slow, as we rejoiced in every second that you remained here on this Earth with us. And yet, I feel like this year has come and gone so quickly…with the highest of highs, and lowest of lows.

Throughout this year you have shown us your strength and perseverance to live. Even through all the pain you have been through, you remain so full of life and delight. You are our number one hero, and the child that we prayed for with such vigilance.

You have impacted this world so greatly in just this short first year. You have had so many people praying for you, people that you have never met. Complete strangers and people from all across the world lifted your name up in prayer.

You have restored people’s faith, and made us believe that miracles really are possible. That all things are possible in Christ.

Because of your birth, your mommy and daddy have been forever changed. We see the light of God shining down on you with each passing day-and we feel so privileged to call you “ours.”

And to think-this is just the beginning.

We enjoy every moment of watching you grow. Even with all the fears and worries, we know that you will grow to be the exact person that God has intended you to be.

We are so proud of you.

We know that your brother is looking down on you and smiling. He is living and breathing in and through you. I can sense his presence when I hold you close.

You are the little boy that wasn’t supposed to survive. The boy whom was deemed to live a life that was “less than quality.”

But God had a greater plan.

You are my smiling, cuddly, lovey boy. The boy that loves peek-a-boo, and laughs with such jubilance. The most determined boy, who pulls up on everything. Who is fearless-and crawls around, despite having high muscle tone in his legs and arms.

You amaze me Malachi.

I love you so much. I REJOICE in you today and every day.

Xo,

Mommy

My precious Michael,

I watched balloons rise high to the sky today, to wish you the happiest of birthdays in heaven.

I held back sobs of tears as a heaviness fell on me. I thought, “he should be here.”

But even in the midst of all the emotions that I am feeling today, as I relive your birth, I can’t help but smile as I think of the first time I saw you.

11:08 p.m. 1 lb 6 oz of pure sweetness.

Your delivery was not easy. It was full of tears, and crushing pain; but being able to give birth to you was worth everything.

I feel so privileged that God handpicked me to be your mother. To carry you in my womb, and give birth to you and your brother. Even though your life here on Earth was painstakingly too short, it was also meaningful.

I don’t understand why it all happened the way it did, and why we have to remain so far away…but I will always love you with an intensity beyond belief.

Forever I will grieve you, but especially on this day…December 28th.

Sometimes I wonder if God allowed you to live and then die so that I could be used as his vessel. So that such depths of pain and brokenness could then be turned into usefulness for the kingdom of God. It doesn’t take away the pain and void that I feel as your mother, but knowing there is purpose in your existence helps to shed light to my aching soul.

I am forever changed because of your life. I love harder, and feel deeper. Heaven feels closer, and this finite life seems so brief. For I know that this is not my home. No…Home is with you. You are where we all long to be.

I want you to know that I am so proud of how hard you fought in the NICU. You were a little rock star, who had all the doctors blown away by your will to live. And like a thief in the night, infection and sepsis snuck in to steal my little bundle of joy…My life…my baby boy.

YOU Michael are just as precious to me now as the day you were born. It is with such tenderness and affection that I dwell on your life today and always.

Thank you for making me a better person. Thank you for living long enough for me to love on you, to hold you, and tell you how wonderful you are. I truly believe that God allowed you to live those 3 weeks for your daddy and I. We needed to know you. We needed to hold you, and love you, and feel a part of your life.

I’ll never forget the warmth of you on my skin, and how your touch melted all my fear away. I never stopped believing in you. Even in your last seconds of life, I hope it was evident to you the depths of my love. A mother’s love is the strongest love there is.

You are not just a statistic. You are my son. My baby. And I will never get over the loss of you. But it is with such great honor that I call you MINE.

My wish for you today on your first heavenly birthday, is that your life and legacy will be remembered. That your memory will leave a lasting mark on all who knew you and took care of you.

I love you Michael. Forever my baby you’ll be.

Xo,

Mommy

It’s the small things…

November 26, 2015November 26, 2015 MalachisMom3 Comments

It’s those glazed sleepy eyes that I see when the sun comes up. It’s the way you turn your head sideways to get a better look at things. It’s your quirks, your personality-that is both timid and gentle, yet total goof ball-all at the same time. I love all the little things about you-the ins and outs-that make you unique.

I love the way you gently whimper when you’re trying to fight sleep. I love the way your entire demeanor changes to a solemn tone of satisfaction when we take a walk outside. The way that you could swing on the front porch for hours, listening to the wind chime cling and clamor. The way you stare at books with such intent as you try to decipher each picture. The way you laugh with your entire body and splash your chubby legs during bath time…

From your pudgy little toes, to your fuzzy blonde hair that sometimes sticks straight up-I love every piece of you.

In fact, I wish I could take all the small things that make our lives so radiant-and somehow bottle it up.

I live for days filled with simplicity…without appointments, procedures, and checkups. When we can just lay on the floor-blaring Christmas music, or dance around in the kitchen.

I crave these moments…these little blimps of our life that fill my heart to the upmost with gladness and delight.

And to think…there was a time when I didn’t know if I could have you. A time when a future with you seemed dark and distant. When the thought of having you safe in my arms at home was just a blurry fantasy in my sweetest dreams-and a reality I thought I would never partake…

But here you are. And your future is looking brighter than I could have ever imagined.

Sure-we may have to weather through a few storms, climb some mountains, and take on a few set-backs.

But I know you Malachi-and you are strong. The strongest little boy I know.

A little boy that is growing up into this beautiful person…full of LIFE, bliss, and an undeniable charm.

Many people have been asking me how Malachi is doing-and while I usually answer with a simple “he is fine” or “doing good,” which will usually suffice. I really want to tell you more. So much more. If I could sit down with you on a sunny afternoon and chat…I would probably tell you something like this…

Malachi is doing wonderful. Considering his past, his medical history-including a grade four brain bleed & PVL (dead brain tissue), and the bleak prognosis we were given over his life. Yes-he is doing amazing.

In fact, even though October has been busy with appointments and therapy sessions, it has also been intermixed with spontaneous trips to the park, and stops by the pumpkin patch. We try to fill Malachi’s life with moments of absolute joy, by squeezing in tidbits of adventure no matter where we go.

Also, Malachi has also been gaining weight (17 ½ lbs) and meeting new milestones, such as passing toys between hands, sitting up unassisted, and eating more by mouth.

In fact, he loves to eat peaches, yogurt, and carrots (his favorites)-and he makes an absolute mess every time he does so…

Something about just letting me feed him is not sufficient. No-Malachi wants to hold the spoon, and touch the food-and then cover all his toys in a sticky mess.

But, we are trying to make eating enjoyable-so we just let him have at it and deal with the gummy residue later.

…And while I have seen so much progress in Malachi, I would be lying if I told you every day was easy.

You see, while meeting new milestones comes second nature to most children-Malachi has to work extremely hard to do seemingly “easy” tasks. Like rolling, and sitting. There have literally been HOURS worth of therapy to get him to the place he is now.

And eating. While he can sit down and spoon feed fruits and veggies-he has a very difficult time drinking due to low oral tone. Malachi will NOT take a bottle. Not even for a second. If he drinks anything by mouth it is from his cups that our feeding specialist has given to us. This is why Malachi’s G-tube has been such a blessing.

And while I was 100% opposed to getting it when the doctor first brought up the concept, I look back now and can’t imagine life without it.

Yes-it comes along with its own set of challenges, but it is also giving Malachi the nutrition he so desperately needs.

Sure-we get a few odd stares when we try to feed Malachi in public. But who cares what strangers think anyway? We have our routine down. A system that works for us. In fact, I love the snuggle time I can receive while feeding Malachi. It may be deemed “odd” or “different” to most-but it is “our normal.” It is helping Malachi grow and flourish both developmentally and cognitively, and for that, I am most grateful.

While the surgical procedure was intimidating, and it took a little bit of time post-op to get Malachi’s pain under control, I can honestly say Malachi handled it so well.

In fact, the main surgeon described Malachi as “feisty” and went on to say that if he had not taken the breathing tube out after the surgery, Malachi was seconds from ripping it out himself. I found this humorous considering that my biggest fear going into the surgery was the possibility of a difficult extubation process-and Malachi having to stay on the ventilator postop. But God equipped Malachi with exactly what he needed to get through the surgery, and to recover without complications.

Here are a few images from surgery day…

Malachi has also been busy working in physical therapy with our focus being mainly on crawling-however, he does not seem very interested in this…

He would much rather try to pull up on mommy, and climb her like a monkey! He has realized that if he pulls up hard enough, he can stand-and thus see the world in a whole new light. But-there is a saying that goes something like this “you do not learn to walk by walking,” and this proves to be true in Malachi’s case. Due to his high muscle tone in his lower extremities we have to limit standing time, and focus still on floor skills, such as transitioning to sitting unassisted, crawling, and rolling all around.

But Malachi is such a trooper, and I know that he is doing things on his own time table. He always has…and that is fine. I can only push Malachi so hard, and then I have to hand it over to God- our source of strength.

We also recently received Malachi’s twin brother’s headstone. What a bittersweet day. I was in such awe of the beauty of the headstone. It was perfect-exactly what I had imagined for my little boy. But my heart was so heavy in seeing it.

So heavy in having to live with this emptiness.

The memories of his loss.

The guilt.

The overwhelming grief that hits you at any given moment….

It seemed appropriate that the day when we went to Michael’s grave it was raining. It was as if the heaviness of my soul was crying and tears from heaven where flowing downward towards Earth. And as I bent down and placed my hand on the ground-I couldn’t help but weep for my son. The son that should be in my arms, and not buried beneath me.

But with intense grief, there also comes a new level of joy-one that can be felt with such depth. And as I watch Malachi grow up, I can’t help but feel a sense of joy that radiates through my entire being. The kind of joy that I know only comes from our father, Jesus Christ.

You see-if HE is your source of joy-then no one can rob you of that. The Joy that comes from the Lord is lasting. It is forever.

Throughout our day, we talk about Michael often. We show Malachi pictures of his brother, and while he does not understand right now, we want him to know that has a precious brother, one that forever impacted our lives. We want to speak his name. We want him to come up in conversation. We want him to somehow live in and through us.

My mom had a dream the other night that my grandmother, who passed away a few years ago, was holding my Michael and rocking him in her arms. I too had a dream of Michael the other day. It was the first time I could see his face, and he was about the age of Malachi in my dream. He was perfect. Whole. And while it doesn’t make the sting of losing him any less, I do not lose hope. For I know that he is in the very presence of our Lord and Savior.

Sometimes I wonder if twins by instinct know that they are one of two. Malachi has the type of personality that he wants someone nearby at all times. Even if we are playing with toys on the floor-he will periodically place a hand on my chest or my leg, just to make sure I am close. If I leave him, he will whimper-or lift his hands in the air for me to pick him up. And it’s not just me-he does this to my mom, or anyone that will play with him. He doesn’t like to be alone. And sometimes I wonder if that is the “twin” in him.

I was absolutely honored in October to speak at two events for pregnancy and infant awareness month.

Many different individuals gathered for these events- each with diverse upbringings, values, and pasts. Yet, we all shared one common bond. We all knew what it felt like to lose a child…the kind of grief that shakes you down to your soul, and rips you to the core. We all knew what it felt like to have a piece of our heart forever shattered. And while we gathered together-in brokenness-I shared the following words…

“I want you all to know that the life of your child mattered -no matter how brief. Whether your child was lost early on in a miscarriage, died before, during, or after child birth, or in the weeks or even months to come. No matter what the circumstances were-the life of your child was valuable. Their life deserves to be celebrated. And you deserve to be happy again. Your child would want that for you.
A young lady named Lexi that lost her son due to congenital heart disease at 6 months of age wrote the following statement: she says… “I’ve learned that the most radiant people aren’t the ones you see on billboards or whose name is in lights. It’s the quiet survivors who have been shattered beyond belief and have overcome. The ones who grit their teeth and carry on, day after day, clinging to hope, even if it’s by a single strand. “
I love her words. YOU are the quiet survivors. The ones that push onward, despite feeling crushed in spirit. No matter how weak you feel on the inside-you are an overcomer. And that in itself makes you strong.”.

We lit candles in their memory. We released balloons in the sky. And most importantly-we spoke of them. We remembered them.

That is the thing about losing a child. It changes you forever-and it should. Irrevocably. Intensely. For a lifetime-we are changed.

And in a blink of an eye, October was gone. The leaves were changing. And November was rushing in with its crisp winds and all the festivities that come with the upcoming holidays.

November was the start of prematurity awareness month. This month is important-because like a brewing storm or a raging fire-all of the struggles and medical issues Malachi faces are a direct result of his prematurity.

And with Thanksgiving finally arriving, we can’t help but think about how undeniably BLESSED we are to have Malachi in our life. We are blessed to have a loving family, a house over our head, and food to eat. And while we have faced great tragedy this past year-we reflect on how far God has brought us.

Through the valley of the shadow of death.

Through the raging storms.

God has remained faithful.

We are thankful this year for his resurrection power. For his unending love & grace. Just to think…the God of the universe LOVES US-and has called us his own-that is something we can cling to this holiday season.

We love you Malachi….

Absolutely every piece of you.

Everything.

And I love watching you grow… but at the same time, I wish I could just make this moment in time stand still. I want you to blossom, and do all the things little boys your age are doing and yet, just for a second-I wish time would stop.

That the universe would halt-and I could just take in all the simple things about you that make you so wonderful.

We delight in you Malachi, and the blessing you are. In fact, our lives would be incomplete without you in it.

Happy Thanksgiving everyone.

Rejoice in the simple things in your life that make it so splendid. For when years have passed and you are looking back at your life in retrospect-you will quickly see how the “small things” were indeed actually the more vast and meaningful things after all.

My Shunted Hero- Hydrocephalus Awareness Month

September 15, 2015September 15, 2015 MalachisMom2 Comments

“Your boy is sick”…the words rolled of his tongue in a fashion that was hard as stone. No emotion. “There is not a lot we can do for him at this time,” he said. “But we have to do something” I cried out-“his head is swelling, his heart rate is dropping; there has to be something that can be done.”

I will never forget the first conversation I had with Malachi’s neurosurgeon. Malachi’s outlook was grim and his quality of life seemed bleak. “My baby doesn’t deserve this,” I would cry out.

But death did not have a hold on Malachi. He would live, and his life would be meaningful. Hydrocephalus will not define Malachi. Malachi is more than a conqueror through Jesus Christ!

September is Hydrocephalus Awareness month.

Malachi developed hydrocephalus after he developed a grade 4 brain bleed from being born prematurely. The impact of labor was too much for the tiny vessels in his brain, and the blood “clogged” his ventricles, not allowing cerebral spinal fluid to drain out to the spine as it should. Hydrocephalus is a disease that has NO CURE. The only treatment for hydrocephalus is risky and invasive brain surgery.
In fact over 1 million people, young and old are living with hydrocephalus. However, even after 50 years, we are nowhere near a cure, let alone a less invasive treatment option.
Research is essential. At the very least we need treatment options that have more positive and long term outcomes. As well as diagnostic tools that are noninvasive and cost effective. Our shunted heroes deserve a cure!

Malachi’s VP shunt has allowed him to defy so many predictions that were made over his life…all because it allows his cerebral spinal fluid to drain away from his delicate brain tissue, and into his abdominal cavity. This allows his beautiful brain to grow, and not be compressed from rising CSF levels.

When Malachi was too little to get a shunt, he had a reservoir placed (brain surgery). This reservoir served as a device where a needle could be inserted and spinal fluid could be drained. Malachi had 10-20 mls of fluid drained every day. We were so thankful for the reservoir. Although it was not perfect by any means-infection risks, pain from the needle, and bradycardia episodes after taps-it was much better than the alternative.

Before Malachi had his reservoir placed (the surgeon would not perform the surgery until he was 800 grams), he would have taps with a large needle that drained directly through his skin and down into his ventricle through the soft spot on his head. This could not be done daily-first of all because it went much deeper in the brain and was risky, and secondly because of the added risk of infection. Therefore, Malachi would have his head drained every 3-4 days.

While we waited, Malachi’s head would swell. It was awful. He was in pain from the spinal fluid compressing his brain tissue, and there was nothing I could do but sit with him, and stare through plexiglass walls. I couldn’t even hold him because when we tried, his heart rate would drop and his oxygen levels would fall dangerously low. His hydrocephalus effected every part of him. It was hard to watch…his head enlarged, his fontanelle bulging, and his little eyes sunken in. It was heartbreaking.

Malachi before surgery for his VP shunt.

Malachi after his surgery..he had a rough recovery.

Now I look at my smiling 8 month old boy, and grin from ear to ear. He has been through so many things in his short life; yet, he is the most joyful child I know. He loves bath time, watching himself in the mirror, and rocking in the rocking chair. He loves when mommy sings to him, and when daddy tickles his belly. He is vibrant, determined, and energetic. I love my shunted hero!

Things are different now. We still have fears and uncertainty, but it doesn’t feel as “life or death” as it once did. However, if I said it was easy I would be lying. You never know what the next day will bring. While Malachi’s reflux has improved (praise God!) he still is only eating in his sleep (I know it sounds crazy…but it’s more common then you may think). G-tube placement surgery is scheduled for October 6th.

We never thought Malachi would need a G-tube. But, I have tried everything in my might to keep him from getting to this point, and my efforts are still not enough. Malachi lost weight this week; and we need optimal nutrition to nourish his growing brain. We don’t want to look back on life and wonder “if he had the nutrition he needed, would he have flourished?” Therefore; we embark on a road to G-tube placement.

While we dread the surgery and the possible complications that could arise, I know in my heart that this is what Malachi needs to supplement his oral feeds. Malachi runs this show, not I. And while I fight daily to protect him, there are some things that are out of my control. I give this to you Lord-it’s out of my hands.

“The LORD says, “I will guide you along the best pathway for your life. I will advise you and watch over you.”‭‭ Psalms‬ ‭32:8‬ ‭NLT‬

Unless a miracle occurs (which of course we know is possible!), Malachi will be having surgery. Will you please join with us in prayer now? Prayer for healing of Malachi. Prayer for protection as we travel to and from Durham weekly. Prayer for this upcoming surgery-that it will be void of complications, and that he will not suffer in pain. And as always, please pray for his brain and shunt functioning.

As mentioned earlier-the only treatment for hydrocephalus is brain surgery. 50% of shunts fail within the first 18 months. We are always praying that Malachi’s shunt will continue to function as it should, and that ultimately one day he will not even need it.

Thank you for following our journey. For praying with us, and standing by our side. Take a moment out of your busy day, and remember those suffering with hydrocephalus. It’s not a disease that is talked about often, but for those who have it-it effects their entire world.

8 month old Malachi: A Micropreemie’s Story.

August 30, 2015August 30, 2015 MalachisMom5 Comments

“If I could just touch your hand, maybe my soul could breathe”….I place my hand inside the incubator, and for a second our hands meet. Your tiny precious fingers wrap around mine. Such fragility-with visible veins and a moist stickiness about them. Yet, I could hold them for a lifetime. But, within seconds I notice your oxygen levels going down. “He is just agitated,” the nurse replies. Oh, how my inmost being aches just to hold you. Tears begin to flow…”I can’t even touch my baby without causing harm,” I proclaim. “My body has forever failed you.” I sit beside you instead, watching you squirm about…alarms going off. “You aren’t supposed to have to suffer like this. It wasn’t supposed to be this way.” “I will bring some morphine to help him relax,” the nurse states….”he seems to be fighting the ventilator.” I stare at you from behind the plexiglass. My heart wants to burst. “I just want to touch you. I need to feel you. You are mine-yet, I am empty handed.” …I guess I will go pump. …”it’s the only thing I can do for you.”

I remember this day like it was yesterday. It was a common occurrence for my heart to long to touch and hold my babies…but not being able to because of their fragile state of health. They were holding onto life, and many times I felt as if I was too. I would hold my stomach and mourn. “You are supposed to be inside of me-safe and secure.” It’s not fair! Am I being punished? Could I have prevented this? …All these thoughts of uncertainty and guilt ran through my mind.

Today, I hold Malachi closely-his soft touch and rhythmic breathing eludes a peace and a calmness within me. One hand on my chest, the other holding my hair so tightly…your face nuzzled within my neck. I see my tears falling onto his soft skin and think for a moment…”if only my tears could heal you…” I hold his smooth fingers-no longer sticky and translucent, and think of how far we have come. I longed for so long to hold you, now I never want to let you go. Shouldn’t this be enough? Yet, my mind is weary from frustration. Weekly trips to Duke, long appointments filled with tears and vomit. Weekly trips to Rocky Mount for physical therapy. Weight checks, now feeding therapy. Possible surgery in your future. Yes, you are worth every bit of it Malachi. And what we face now can never be as tragic as the battles we once fought. But, I know it’s hard. I’m trying to make your life as “normal” and ” pleasant” as possible. I try to squeeze in as many tickle tummy, patty cakes, and ” the cow goes mooooo” as I can. Your smile is what gets me through each day. Your smile hits me like a bolt of lightning-and for a second, all my troubles are vanished into the air.

I must admit, the past month has been like riding a wave onto a crashing shore. On one hand, I am elated in the progression I have seen in Malachi. No, Malachi does not roll over, crawl…nor does he enjoy eating (previous post). But, he is the happiest most joyful little 8 month old (4 months corrected) little boy that you will ever meet. Yes, he still has moments of fussiness like any baby, but BOY does his smile light up a room. He has come so far in Physical Therapy. Just recently he started lifting up his feet, and trying to touch his little toes. Malachi has low core muscle tone, and the fact that he can now squeeze his tiny tummy muscles, and hold his legs up is a huge accomplishment for him. He cannot roll over yet…in fact he hates anything to do with trying to roll. But, with a little trunk rotation, Malachi can finish the roll. Sometimes he can roll off his tummy if his hands are placed in the right position, but usually he just props himself up on his forearms and looks around.

We are currently working on trying to get Malachi to pivot for toys, and then we can start learning to belly crawl. While Malachi has the skill set of a 4 month old (for the most part)…you can tell that he has been out of the womb longer. He is not mobile, but boy does he always want to be on the go. You place him on his tummy and he will grunt and move his arms like he is trying to go somewhere. The physical therapist says…”he is more interested in wanting to crawl than learning to roll…” “He must not have read the baby book on development,” she adds…”and that’s ok!” I will say that I have seen a great improvement since last month in Malachi’s ability to sit up with limited support. If you look at a picture of him at 7 months old, and then at 8 months old-you can see that his head control and stability has greatly improved.

Malachi at 7 months old (3 months corrected)...not digging the whole picture taking thing. I think he was trying to eat his shirt. — Malachi at 7 months old (3 months corrected)…not digging the whole picture taking thing. I think he was trying to eat his shirt.

Malachi at 8 months old. Again-not too sure about taking pictures. But isn't that face the cutest? He is supported sitting in this picture. Something he could not do at 7 months. — Malachi at 8 months old. Again-not too sure about taking pictures. But isn’t that face the cutest? He is supported sitting in this picture. Something he could not do at 7 months.

Malachi’s PT always says that he is the most determined little boy. She states: Even if he does struggle in learning to walk, Malachi is going to have “bumps and bruises from trying to walk,” from his incredible resoluteness. “Why would Malachi struggle in learning to walk?”…you might ask. Malachi has been diagnosed with mild hypertonia. In other words, due to the brain bleed that he sustained at birth, sometimes his muscles fire and tighten involuntarily. However, Malachi is such a fighter. He fights like a micropreemie…and that is a strength like no other.

In terms of fine motor skills, Malachi also has completely mastered the whole “grab and put things into your mouth” thing. Toy keys, blankets, fingers, mommy’s hair…you name it…it’s going straight into Malachi’s “mouthy hole,”as we call it. Malachi loves to babble non stop, and he can follow me with his eyes from across the room. We have a long way to go in meeting each milestone, but Malachi is trying so hard-and that’s all I can ask of him. He will do things when he is ready. Yes, it can be extremely frustrating at times, especially watching him seem so disinterested at times in learning new skills. But we will get there. “One day at a time,” I tell myself.

I try to focus on what Malachi can do, rather than what he cannot do. Yes, Malachi struggles…but I am so proud of him and all that he has accomplished thus far. It may not seem like much to you, but in terms of how it could be, it is monumental. I used to cry as I watched other babies, and even other micropreemies that seemed to be meeting milestones more quickly than Malachi. I would compare him to other babies his age and get so discouraged. And then I came across this verse, and I felt it was very relevant to my life. I wanted to share it with you…

“Then I realized that my heart was bitter, and I was all torn up inside. I was so foolish and ignorant— I must have seemed like a senseless animal to you. Yet I still belong to you; you hold my right hand. You guide me with your counsel, leading me to a glorious destiny. Whom have I in heaven but you? I desire you more than anything on earth. My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.” (Psalms‬ ‭73:21-26‬ ‭NLT)‬‬

…Even though I fail daily, I still belong to Christ, and he is holding me by the hand through it all. Even when I feel alone, he is there.

For a 23 weeker with a grade 4 brain bleed, Malachi has already blown so many doctors away. He may struggle in some areas, but he also has made leaps and bounds. It is so unfair to Malachi for me to compare him to babies that had such different paths in life. How can I compare him to a baby that did not fight for his life? I can’t.

One of Malachi’s Nurse Practitioners wrote to me and said “One of my best memories of Malachi is from the the day we extubated him after surgery and he was “rocking the breathing thing”….I knew that day that your little guy was a fighter and was gonna surprise “medical” people for years to come.” Her words lifted me up. I remember reading her words and crying, as it took me back to that very day. There were so many people that believed in Malachi…even when the statistics were against him.

So what if your baby does not defy all the odds? They are still valuable. Value should not be based on what your child can or cannot do, but rather the joy they bring. Even the parent that cares for the blind child- the child that cannot walk, the child that has limited verbal interactions- they are still valuable. They still bring joy-they still have meaning, and a purpose. So, throw the baby book out the window. Believe in your child. Look for progression, and don’t focus on a time table. Malachi is doing things on “his time” …and while as his mom I want nothing more than to see him live a life of independence and influence. I know that he is already changing me for the better, and that’s a pretty good start.

So while I work hard in pushing Malachi to maximize his potential, I also need a balance. Time to just snuggle, or to just read a book. Time by the lake to reflect and sing songs. Life is speeding by so quickly, and the last thing I want to do is spend all my time worrying about things that no one can predict. Malachi knows he is loved beyond imagination, he is joyful & exceeding expectations. I’m so proud of you Malachi!

Through this journey there have been so many times when I have had to throw my hands in the air and say..” Ok Lord, I don’t understand…but I’m trusting you.” Trusting God in the depths of a storm can be difficult. I know for me it has been hard to trust God after the death of Michael, and watching Malachi go through such immense suffering. When you are deeply wounded, trusting God can be painstakingly exhausting. In your heart you want to give it all to Him, but your crushed spirit is screaming out for answers. You cry out-“why can’t life be easy?” But the problem with an easy life is…it masks your need for Christ. Yes, the past few weeks have been difficult….Malachi is still not gaining weight as he should, vomiting, and refusing to eat at times. But, we have also learned to lean on God for understanding. To trust him, even when we don’t see the bright light in sight.

“Commit everything you do to the LORD. Trust him, and he will help you.” (Psalms‬ ‭37:5‬ ‭NLT)‬‬

So while life is not easy, I am thankful for the struggle. Not because it feels good, but because it is propelling me forward. Would an easy life be more convenient? Absolutely. But, this is the hand I’ve been dealt. And I know that God does not make mistakes. And so we wait. We wait for direction, provision, and guidance.

“Be still in the presence of the LORD, and wait patiently for him to act…” (Psalms‬ ‭37:7‬ ‭NL

So how can you pray specifically for Malachi? Pray for his development, as he strives to meet his milestones. Pray for healing of his brain, and continued functioning of his shunt. Pray that he will gain weight this week, and overcome this food aversion. Pray that if Malachi does have to have surgery for G-tube placement, that it will be void of complications. Pray that we will make the right decision. Pray for his muscle tone in his legs, arms, and core. Complete healing.

People ask me sometimes, “How do you do it? …losing a child, raising a child that is medically complex…I just don’t know how you do it and keep going” or “it takes a special person to raise a child like Malachi.” But does it? Malachi is so easy to love. Sometimes I don’t know how to respond to such remarks. You make it because you have no other choice. A mother that is raising a child with any disability or loss has no other choice but to keep moving forward. You find a way to put one foot before the other. You learn to be happy for the people that never struggle to get pregnant or make it to a term pregnancy. “Rejoice with those that rejoice, mourn with those who mourn” (Romans 12:15, NIV). You rejoice for the person that may have what you have not, because that is what we are called to do. I am so thankful for the people that have mourned with me and shared in my sorrow. When you cry with me, it is as if some of the weight is taken off my chest. It is as if you are helping me carry the load.

You pray for strength, and push onward- because the alternative is not living. You struggle daily, but you pick up the pieces of your broken life and like shattered glass in a mosaic piece of art…you try to make something beautiful out if it.

Broken Seashells–A micropreemies first time to the beach.

July 19, 2015July 19, 2015 MalachisMom6 Comments

“There is a time for everything, a season for every activity under heaven. A time to cry and a time to laugh. A time to grieve and a time to dance.” Ecclesiastes 3:1,4

I can hear daddy singing to you from down the hall, I hear your voice softly cooing, and my heart melts. I wake up and look to see you smiling in your bassinet beside me. Your smile lights up my entire world –it can make my mood or feelings instantly change for the better. There are so many days when I wake up feeling inadequate. I ask myself “am I doing enough?” …then I see your gummy smile, and it is like you are saying “Mommy—you are more than enough.” I love you Malachi. Being your mother is the greatest blessing I have ever been given. Many people see you, and at first glance you seem like any other child. You are adorable—with those big blue eye that make people delight over you. You smile with those dimples, and your entire face lights up. You are such a happy boy. They don’t see the struggles you have endured. They don’t see your strength and determination. But I see it Malachi. It is because of you that I see life in a whole new way—and I thank you for that. Daddy just said the other day…”sometimes I cry thinking about all that Malachi has had to go through.” And I agree—you are the strongest little boy I know. The physical therapist this week couldn’t get over how determined you are. Playing is hard for you. Laying on your stomach often makes you vomit, and sitting up sometimes makes you pant in your breathing, and feel short of breath. But it doesn’t stop you. The odds have always been against you. But somehow you always find a way to overcome. When the odds are one in a million—you always strive to be that one. You are my hero Malachi.

The gentle ocean breeze, the salty air…the sound of the waves crashing to the shore. There is nothing quite like this view. It might just be my favorite.

Who am I kidding? THIS is my favorite view!

If you had told me I was going to be on a beach with Malachi, smiling & enjoying life a few months ago, I wouldn’t have believed you. For a long time I often wondered if life was ever going to be joyful again. I didn’t know if I had the strength to emerge from my pain. This week I laughed…I laughed to the point that I felt like my heart was lifted to the sky. I smiled. I cried. I even had moments of doubt and fear. But through it all, I am thankful for this life I have been given with Malachi.

Malachi has to be very cautious when going out into public due to his early birth. His lungs are not as developed, and they sustained damage from being on the ventilator for the first 6 weeks of his life. Until we can at least get through this first winter, we do not go grocery shopping, to church, or out in public for that matter, because we are protecting Malachi from germs. It takes time for the lungs to regenerate, and the doctors want us to be extremely cautious for the first two years of Malachi’s life. Even a “minor” cold could lead to a hospital stay, and flu or RSV could prove deadly. This is why I had such a hard time deciding if I was going to go to the beach with Malachi or not. But, I just couldn’t stand the idea of Malachi missing out on such an amazing opportunity—to hear the ocean, to feel the sand between his toes…

So what did we do? We brought the disinfecting wipes and headed to the beach! We were VERY cautious mind you. Malachi spent a lot of his time at the resort, but he also got the opportunity to get in the ocean for the very first time. It was amazing to see his face when the waves slipped over his little toes. He enjoyed sitting in the water, and he even took a long nap under the umbrella. This was the FIRST week we have had since being discharged from the hospital that we did not have a single appointment! Our physical therapist was on vacation, and somehow we managed to schedule all other appointments either before or after this particular week. We were able to focus on our family—and the love we have. We had time to play, time to think & clear our minds. We were even able to go out to eat at a restaurant as a family for the first time. We called ahead and reserved a private room at the Sea Captains that was away from all other guests—and as a family we were able to enjoy each other’s presence. Here are a few pictures from our beach trip…I hope you enjoy!

Malachi enjoyed napping with mommy. He is such a snuggle bunny.

Tummy time pool side. YES, we do therapy even on vacation. :) — Tummy time pool side. YES, we do therapy even on vacation. 🙂

The pool wasn't my favorite. But I am still precious. — The pool wasn’t my favorite. But I am still precious.

First night out for dinner at the Sea Captains.

I wish I could give you an update on Malachi’s weight, but he hasn’t been weighed since his check up on June 30^th. If I had to guess, I would say he is almost 14lbs, but that is just an estimate. The doctors do not seem concerned with his weight gain. Miracles that have been evident in Malachi’s life over the past few weeks include that the opening in his heart (Patent Ductus Arteriosis) has closed, and will NOT need surgical intervention. Praise God! Also, he had a good eye exam that proved that he can track with his eyes, and he no longer has ROP (Retinopathy of Prematurity). The doctor did say that he had cortical brain damage from his brain bleed that could very well effect his vision & ability to focus; but he can definitely see to some degree. In physical therapy we are still working on his ability to roll, grasping toys, finding his feet, and stretching his lower leg muscles—which are a little tight (hypertonia). Just this past week (at the beach actually) Malachi started taking toys and putting them in his mouth. I have noticed that he can focus longer and track toys better than ever before. Furthermore, he smiles much more frequently. In fact, if his tummy is not hurting, or he is not hungry or sleeping—he is most likely smiling. Malachi also started sleeping through the night (for the most part), which is such a blessing. When he is awake, mommy has him busy practicing rolling, and learning to grab toys. We have to take things slow, so that he can tolerate the activity without vomiting & panting in his breathing; but, we find creative ways to play. I have learned that I can’t worry about the future. All I have is the now; and right now I have to be strong for Malachi. He needs me. We need each other.

On our last day at the beach, we stopped by the ocean one last time to talk to Michael. We wrote his name in his sand, prayed, and just took some time to remember him.

We always see Michael in the sun. He was shinning bright that morning.

… as I walked towards the ocean that morning, all I could see were broken seashells surrounding me. Where are all the beautiful seashells, the ones that aren’t shattered into pieces? …I thought. But, then I realized the beauty that existed in the broken seashells around me. I saw my own brokenness, and pain. For me, those broken shells represented unfulfilled dreams, emptiness, uncertainties…the loss of a child. Aren’t we all in a sense broken seashells that are battered by the waves of life, and the sand of time? We are searching for something to cling to. Searching for hope & truth in the midst of great chaos and disappointment. Psalms 34:18 states “The Lord is close to the brokenhearted; he rescues those who spirits are crushed.” Is your spirit crushed today? I know my spirit has been crushed, and if it wasn’t for the Lords peace and his holy spirit guiding me—I don’t know if I would have made it. Do I still fail daily? Certainly! But isn’t that the wonderful thing about grace? God’s grace is sufficient. In fact, the love of God is so vast & his mercies are new every morning—it is hard for our finite minds to even comprehend it. God sees the beauty within your brokenness, and he wants to provide you a net of safety. He longs to give you peace—to sustain you—to bind & heal your deep set wounds.

Psalms 55:22 Cast your burdens on the LORD, he will sustain you; he will never permit the righteous to be moved.

Psalms 147:3 He heals the brokenhearted and binds up their wounds.

The bottom line is—God’s grace is enough. No matter how I feel, or what the day holds. It is when we can truly let this sink into our hearts and minds that we are able to overcome great sadness & heal.

“I’m planning to spend the rest of my life just happy that God loves me. That he has forgiven me. And that he has made me his own.”

-Judah Smith (Life Is Book)

I have two options—I can live my life as the broken shell that struggles to even get out of bed in the morning; or I can focus on the beauty that Christ sees in my brokenness—and strive to live each day just happy to be a part of HIS team. It is about changing my perspective & focusing on the prize—eternal life with my Lord & Savior. THAT is what life is all about.

When I left the ocean that day I wrote Michael’s name in the sand. I watched as the water washed his name away. Gone from sight, but never gone from my heart. This is for you Michael…

Dear Michael,

Please forgive me for going on with life without you. There is not a day that I do not think of you. I feel so conflicted. How do I let go of you—or at least the grief that I bear, and still hold onto you? I don’t know if I am ready to let that go. Every morning when I rise I think of you. I wonder what you would look like, how you would act. I wonder what your smile would look like…what your cry would sound like. I’m sorry I ever left your bedside. I hope you never felt alone. There is an unexplainable void that losing you left within me. There is a place in my heart that no one but you could ever fill. I miss you Michael. Some days are worse than others. Today is one of those hard days, where the pain stings like salt on an open wound. I just want to stroke your cheek, to feel your warmth on my chest. The vividness of your memory fades a little with every day; and I can’t stand it. I want to remember every part of you. The good and the bad. I will never forget the first time I saw you— you were there one moment, and in the next—you were on your way to the NICU. I had not named you yet, and when I saw your face I knew right away—yes, that is my Michael. I remember the day you opened your eyes for the first time. Those beady blue eyes met mine. I hope for an instant my presence calmed your every fear. I am sorry I spent more time at your brother’s bedside. Even if it wasn’t much more time, I regret not being with you every second. Your brother was so much sicker than you. I didn’t have time to let you go. I still struggle daily trying to let you go. Sometimes when I am holding your brother, I try to imagine that I am holding you…just one more time. Please know that I love you. Daddy loves you. Malachi loves you. Your grandparents & even people you have never met love you. My life is forever changed because of you. Things that once seemed to matter…well, they just don’t matter anymore. I am so blessed to have known you; to have held you in my arms. No—it wasn’t enough, but in that moment—it was everything. I love you my sweet son. I love you Michael Scott Austin. Forever my baby you will be.

Love,

Mommy

Showing Malachi that life can be JOYFUL

July 2, 2015July 2, 2015 MalachisMom2 Comments

“The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be” –Horace Bushnell

The life challenges Malachi has faced have made him grow; they have made our entire family grow. These challenges have kept him alive. Malachi is an overcomer.

Each time I wake up and see his sweet face looking back at me, I am reminded of the miracle he truly is. Simple things like going outside and feeling the fresh air touch our faces, or rocking him on the porch outside, seem so monumental. For a long time I struggled to see past the next arterial blood gas, chest x-ray, or head ultrasound. There was a time when I held Malachi and thought it might be my last. I just knew I couldn’t bear to lose another child. I would hold him—and try to remember ever piece of him—every smell…every crease on his hand. Many tears have fallen on his precious face as I cried out to God to spare his life. Each venture outside, each new morning is something to be celebrated. Every day is a beautiful day to be alive.

First time holding Malachi. He was on the oscillator-high frequency ventilator.

If Malachi could express how he has been spending his days, I am sure he would talk about the first time he placed his little toes on the plush grass outside, or the time he got in the pool at grandmas, and how he splashed the water with his legs & feet. He might discuss his story times with mom, going for stroller rides in the neighborhood, or snuggles on the couch with dad. Malachi is learning that life can be fun. He is learning that there is LIFE outside of the NICU, and that life can be joyful.

First time getting in the pool at Grandma Stone's house. — First time getting in the pool at Grandma Stone’s house.

Each and every day I strive to show Malachi how truly important he is—that he is valuable—that he is LOVED.

We visit Duke Children’s Hospital for Malachi’s Neurological, Eye, & GI follow ups, and every time we go I see at least 5-10 children that are either wheelchair bound, or severely handicapped. I am always amazed at how many smiles I see on these children’s faces. They are beautiful, loved, and perfect in their own unique ways. Unfortunately, nothing in life comes easy for them; and they will have to work hard in life to do things that most people take for granted. Does the value of these children diminish because they do not walk, or communicate as well as the child that is the star athlete? Are they any less important than the A honor roll student? Never. They are just as treasured, they are just as significant, and they are just as precious.

During my time in the NICU I have met several families that have been through similar journeys as ours. One lady in particular has greatly helped me in my passage towards embracing the unknown of Malachi’s life, and valuing him for who he is, and not what he will be. Her twin boys were bon at 24 weeks. She writes in her blog:

“Our boys aren’t the micro preemie unicorns; the ones who have no lasting effects. I sometimes think those kids are merely urban legends. I used to be at a loss for words when people would share the tale of their second cousin’s grandson who weighed two pounds at birth and is now a strapping linebacker headed to Harvard. I know the folks meant well, but their story is not most families’ reality. I now smile and say “how wonderful, but your cousin’s grandson is the exception to the rule. Most micro preemies face more challenges and lingering effects from their prematurity. Our guys are doing phenomenal, but they still have lots of therapists, doctor visits, and challenges. Other preemie friends face even more daily struggles. In any case, that’s ok. They are loved. They are survivors. They are valuable.” I hope in my own small way, one person at a time I can change people’s views of prematurity and maybe even kids that are differently-abled. That not every story has to end with the preemie unicorn. That the kid who uses a wheelchair to get around or an iPad to communicate is just as valuable and awesome as the kid scoring the touch down or winning the spelling bee. In the long run, most kids won’t grow up to be the president, the next Mother Theresa, Michael Jordan, or a musical superstar. What will matter in the long run is how we teach them to love. Everyone can love and be loved. That is what matters. “ (Etheridge, 2014 http://www.prayingforhisblessings.blogspot.com)

It is amazing the transformation just a couple weeks can make. I remember sitting in the nursery rocking Malachi one day and crying out loud to God “Lord, you are going to have to reveal yourself to me” after feeling as though Malachi didn’t even know who I was. He didn’t smile, he barely looked at me; and I was consumed in fear about his cognition. It was not until 5 months (6 weeks corrected) that Malachi smiled, and then he began to track me—to respond to my voice & presence. He knew me! At 8 weeks corrected he began to “coo” and baby talk. Sometimes he seems to be having a full on conversation with me. He bats at his toys, moves his little…well not so little anymore…arm & legs, as if he is jumping in excitement during play time. He amazes me every day. It is as if I can feel God saying “I’ve got this Allison—be patient; I will reveal myself to you in my timing.”

“Nonviable,” “blindness,” “deafness,” “cerebral palsy,” and “mental retardation”–terms that are often used to describe 23 weekers. Many of these words were proclaimed over Malachi’s life. Doctors suggested that it may be best not to monitor my babies, or perform medical intervention to save them. The statistics for 23 week micro preemie survivors are discouraging. I was told his chance of survival was less than 20%, and that surviving micro preemies often live a life that is “less than quality.” Malachi sustained a grade IV/III bilateral brain bleed. The left side was worse than the right. Malachi can definitely see—he is not deaf, and so far he is meeting his developmental milestones for his corrected age. I am thankful that the doctors did give my babies a chance, and that my Malachi is living. I am so grateful for modern medicine, and how far technology has come. But, I also know that the doctors are not God. God has the ultimate say over the quality of Malachi’s life and his level of independence. There is power in prayer.

“Then they cried to the Lord in their trouble, and he delivered them from their distress. He made the storm be still, and the waves of the sea were hushed. Then they were glad that the waters were quiet, and he brought them to their desired haven.” Psalm 107: 28-30

We had our first physical therapy evaluation last week (at 9 weeks corrected), and the therapist was shocked with how good he was doing. She said “I would have never known he had a grade four brain bleed; let alone that he was a 23 weeker. Of course there are some things that Malachi will need help from physical therapy with. Malachi tends to have more extension than flexion; and he has some mild tightness in his thigh muscles and trunk—this is a result of some mild spasticity. However, every day I work with Malachi in stretching his muscles, increasing his range of motion, and assisting him in meeting his milestones. In the upcoming weeks we are working with Malachi on learning how to roll over, how to grab and pull up his feet, and holding/playing with toys. He will have physical therapy once a week for 60 minutes. The area of Malachi’s brain that was damaged not only controls his motor skills, but it also controls language. —therefore, we are constantly talking, reading, and singing to our sweet boy to help him build language skills. Our prayer is that the right side of the brain will take over the function of the injured areas of the left side of the brain. Brain tissue cannot regenerate, but the doctor’s state that many times with therapy the brain can form new connections and “rewire” itself in a sense. We are praying for complete restoration of his brain. We are trusting and believing that Malachi is taken care of. We are grateful for the Grace that God provides; he loves us—and the promises & plan that he has over Malachi’s life cannot be thwarted.

“Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep his promise” Hebrews 10:23

We also had a very long appointment at Duke with the early intervention specialists that included a 3 hour stay, and blood work. The blood work revealed that his anemia of prematurity had greatly improved, and although his Calcium levels are still a little low (premature babies do not get that boost of Calcium and vitamin D in the third trimester)—they are improving, which is encouraging. Once again—all the doctors and staff were blown away that Malachi was a 23 weeker. Malachi is 2 ½ months corrected age, and developmentally he is doing everything at this point that he should be doing. In fact, in some areas, such as head control—he is actually more advanced than a 2 month old. However, we are still very much aware that the future is still in large unknown at his point. But, I rejoice in ANY good news I can get. The doctor also did not hear a heart murmur—which is an indication that his open PDA in his heart may be closed. He will have an echocardiogram next week—but we are praying it will be closed (so he won’t have to have heart surgery to close it). Overall, I left the appointment feeling encouraged. I told the doctors—he is my miracle! Before leaving, the doctor looked at me and said “keep doing what you are doing—you’re a great mom.” I held my head high as I left—I love being Malachi’s mom; and I am so proud of him. Malachi has shown me that children are so resilient. It is true when they say—you can never trust a preemie. Malachi smiles at us—and you would never know all the pain and suffering he has had to endure. And while we do not know exactly what deficits Malachi may or may not have—we know that with therapy, prayer, and faith in God nothing is impossible. He is already doing SO many things we were told he would never do. We no longer live “second by second” as we did in the NICU. Instead, we have now learned to just take one day at a time. We rejoice with Malachi with each success; and when we meet a bump in the road—we just keep on moving forward. We stay busy with appointments, but my job as Malachi’s mom is to keep his daily routines as normal as possible. I wake up each day with the hopes of making Malachi’s life joyful!

Prayer Requests for Malachi:

Brain—pray that his 6 month follow up scan of his brain will be encouraging. Pray that he meets his milestones, and that his shunt continues to work.
Spasticity—we pray that his spasticity will improve, and that it will not hinder his ability to walk in the future. We pray he will not develop seizures.
Improved vision & tracking (appointment for vision is in the beginning of July).
Reflux & gas pains (as we are transitioning from breast milk to formula since my milk supply has dwindled).
Heart—that the PDA is closed.
Lungs—that he will not get short of breath with activity.
Bones—that they will strengthen and grow.
Cognition—Malachi is catching up in weight and height (12 lb 8oz), but his head size is a little small when compared to other babies his corrected age. Pray that his brain will grow properly, brain myelination will occur, and his brain will find ways to “rewire” itself.

My husband was asked during our interview with the Wilson Daily Times (http://www.wilsontimes.com/News/Local/Story/37251352—LOSS–HOPE-AND-JOY) “what do you hope for Malachi in the future? Jake, with tears in his eyes explained that he use to have dreams of having a son that was a great athlete, and involved in sports. But, after losing a child you change your perspective. He states “I just want Malachi to be that best Malachi he can be…I want him to know he is loved…I want him to live a life of hope & joy…I want him to be happy.” It is true—while we are amazed with the strides Malachi has been making—it is hard not to worry about the unknowns. And that is ok; we know that ultimately God has a plan—and he is taking care of Malachi. We know that he is loved, and he is perfect to us.

Cast all your anxiety on Him, because He cares for you. (1 Peter 5:7)

Easter Sunday 2015

June 8, 2015June 8, 2015 MalachisMomLeave a comment

As I stare at this sweet face I am reminded at how far we have come. I am brought back to the day I first laid eyes on Malachi and Michael…so small, fragile, hanging onto life by a thread. I felt like my heart could burst with love, and i remember crying out to God, “please don’t take my babies from me” with tears streaming down my face. I remember the day the doctor came to me with a box of tissues in hand and told me the news that my child had a severe brain bleed. I remember feeling like i was drowning and that the very air was knocked out of me as she reviewed the possible outcome for my child. She so calmly said “some parents choose to peacefully let there children die” after referring to the quality of life Malachi might have. And she added “at least you have Michael.” Our hearts felt like they were going to burst as we sank down in the floor of the hospital and cried in our despair. I asked Jake “where do we go from here” as i felt my entire body trembling. After several moments of utter despair we decided that we were going to just trust the Lord and the plans he had for us. We were going to fight for our babies lives, and lean on Gods word even when we didn’t see a light at the end of this deep dark tunnel.

I held Malachi later that week for the first time, not knowing if it would be the first and last time I ever held him. I wept, trying to remember the way he felt in my arms, the way his little head smelled. I find myself now trying to remember every detail of Michael, and how he felt when I held his little hand or the little noises he would make while on the ventilator. But in that moment I thought, if one of my children wasn’t going to survive, I thought it would be Malachi. But God chose a different path for Malachi- a path toward healing, a journey towards life, and life abundantly.

I don’t know exactly the capabilities or deficits that Malachi may or may not have, but I know that I serve an awesome God that has brought Malachi this far for a reason. Malachi brings me more joy than I can express, and I claim healing over his mind and body.

On this Easter Sunday we are celebrating Gods love in a small hospital room in the special care Nursery at Vidant Medical. We choose to not focus on the negative, but instead how far we have come. We remember Michael with a heaviness in our hearts, but we rejoice that we knew him, and he knew us. Words cannot express the grief we bear, but we know he is seated in the arms of my risen savior. Today we thank God that Malachi is out of the NICU and in an intermediate care unit. He is gaining weight and bottle feeding. The NG tube was removed yesterday and will stay out as long as he takes 30 mls every 3 hours. He is on 1/2 liter of oxygen, but hopefully in the coming days they will try him off of it. He is receiving occupational and physical therapy weekly. Because he is premature, he has bradycardia sometimes during feedings ( drops his heart rate dangerously low) he forgets he has to suck, swallow, and breath… and sometimes he clamps down, holds his breathe and turns blue… which is very scary for mom and dad. Most importantly we need prayer for his brain and shunt functioning, his development, and his lungs.

Malachi continues to fight, and we are so blessed to see his progress. Each day is still hard, but this little boy just melts our heart and fills us with gladness.

I always feel a little perplexed when people say “Allison you are so strong”…i almost want to laugh and say,” i am the farthest thing from strong“. Most days I have felt overwhelmed in weakness, and overcome by sadness. I am not strong, but I am tethered to an almighty God that is so very strong. Like an anchor he keeps me grounded, like a steal beam he keeps my head held high, like a raging storm he keeps pushing me forward. I saw an image of a tree the other day that had been cut down to a little stump. From the ground the tree looked lifeless, cut off, and broken…but below the soil there were large roots that clung deep into the depths of the earths soil. I felt like i saw myself in that little tree. Broken, and helpless- but with unseen roots that run deep…grounded by the grace of God. I learned through this journey that Gods grace is sufficient. His grace is enough for whatever suffering he allows into our lives. Not just enough to survive, but enough to equip us to EMERGE from our suffering; with faith and hope for the future.

Hebrews 12 1-2 Let us run with endurance the race that God has set before us. We do this by keeping our eyes on Jesus, on whom our faith depends from start to finish.

Journey to Home-a post from May 17th, 2015

June 8, 2015June 8, 2015 MalachisMomLeave a comment

I posted this picture as a reminder of how far my Malachi has come.

Malachi was discharged from the hospital after spending 137 days at Vidant Medical, with the majority of this time being in the Neonatal Intensive Care Unit. If you are unfamiliar with Malachi’s story, here is a quick background..

Malachi and his brother Michael were born on December 28th 2014 at Vidant Medical Center, at only 23 weeks gestation. My precious boy Michael lived 3 weeks, and then passed away after suddenly becoming septic (I will share more about this experience when I feel that I am emotionally ready). Furthermore, Malachi; whom the doctors often referred to as the “sicker twin” beat the odds, and is now at home with us. This journey has been more difficult than I can put into words. It is hard to express the grief and burdens Jake and I have had to bear. Malachi has several medical conditions due to his prematurity. His most prevalent medical condition is an Intraventricular Hemorrhage that he developed shortly after birth. Hemorrhages are graded on a scale of 1-4 with 4 being the most severe. Malachi sustained a bilateral grade 3-4 bleed (meaning some of the radiologist interpreted it as a 3, and some said it was a grade 4. The bleed was not only in the ventricles of his brain, but in the white matter of his brain as well, putting him at high risk for developmental and cognitive delays, as well as cerebral palsy. Due to his IVH, Malachi also developed Hydrocephalus, and had to have two surgical procedures-a reservoir to drain spinal fluid from his ventricles, and a VP shunt when he was older to drain the spinal fluid from his brain to his abdomen. Malachi’s most recent MRI also showed that he has mild PVL, which is essentially a area of dead brain matter around the ventricles of his brain due to the bleed he sustained. This is just another reason why the doctors are worried about Malachi’s brain and functioning. Malachi also has a chronic lung disease called BPD from his prematurity, as well as being on the ventilator for 6 long weeks. Malachi has Retinopathy of Prematurity (affecting the retinas of his eyes) and a open PDA in his heart that will either close on its own or will need surgical intervention later in life. He also has anemia and a very severe form of reflux. He is on medication therapy and has special feeding needs. Malachi had several scares during his NICU stay, many of which left him holding onto life; but he managed, with the grace of God, to pull through. Each day is still a learning experience for Jake and I as we try to take care of our sweet boy, but God has given us patience, strength, and endurance that we did not know existed within us.

The long awaited homecoming…

Malachi came home on May 13th, 2015. After spending 2 days off the monitors, and an overnight stay in the hospital, Jake and I were cleared to take our special boy home. As soon as we got to the hospital that day, I almost felt sick to my stomach. This was definitely not the feeling I expected to have the day I took my baby home; but, so many things were running through my mind. This hospital room was my LIFE for so long, and I was fearful of what life was going to be like outside the safety of monitors, and 24 hour nurses and doctors. I thought “God, I can’t make it without your guidance today.” As the nurse reviewed our discharge instructions my anxiety began to rise. Reviewing his medical needs, follow up appointments with specialists, and medication regimen seemed daunting. It is scary enough taking home a healthy newborn, but taking home a baby that has special needs adds even more nerves. I tried to put my fear aside of me. We dressed Malachi in the most precious white outfit with a bib that said “I prayed for this child.” One of the nurses said “he looks like an angel”…and I could not have agreed more. We took a quick visit to the NICU before saying goodbye, and again-just seeing the NICU brought back a flood of emotions. We saw one of the Nurse Practitioners that used to drain fluid from his brain each day to relieve pressure from the rising levels of spinal fluid. We also saw one of the nurses that took care of him on his second day of life-when we didn’t even know if he would live to see the next day. Each person I saw held a memory, a vivid reminder of how far my Malachi has come. I wanted to pinch myself, as it did not feel real to me that we were actually taking him home. As we walked to the car, my heart was pounding. The nurse, Jill looked at me with tears in her eyes and we stopped and said a prayer. A overwhelming feeling came over me, as I cried out to God in my spirit for strength for the coming days. This is the same nurse that came to me a few days prior in tears as she said

“I remember feeling overwhelmed when my children got ear infections or colds; you have so much more on your plate. But, God equipped you to care for Malachi. He has a plan and a purpose.”

She told me that it is easy to not enjoy the good things in life because you are so focused on the next journey, or the next fearful battle; but she reminded me to enjoy this moment in time with my son. Thank you Jill for reminding me to take each day one by one, and to focus on each blessing the day brings; you have impacted my life greatly.

As we were leaving, I began to to think of Michael, the baby that should be in the car seat beside us. I looked at the sun, and for a second I felt like Michael was smiling down on us as if to say “mommy it is going to be ok.” Malachi slept most of the way home, but once we turned on our road his little eyes peaked open as if he was thinking “this is not my hospital room.” He looked confused as he tried to figure out what exactly was going on. We were welcomed home with a big banner that said “Welcome home Malachi” and an array of ribbons to adorn our front porch. This was when the sheer joy began to sink into my inmost being. A sign of relief…we Are truly home! Malachi had a wonderful day that afternoon, and he seemed to be very intrigued with his new surroundings. We ended the day with several good night time kisses, snuggles, and a prayer of praise and thanks to our heavenly father. He is home, he is finally home!

Although the road ahead still seems frightening, I am comforted by the almighty comforter, who remains faithful in guiding our steps. Malachi still needs a miracle from God. During his developmental assessment the PT said his legs and hips were stiff, and he scored slightly below normal for his corrected age. If you read my son’s medical history on paper it seems overwhelming, but my God is limitless in his resources, and his healing power is being shown in and through Malachi. I serve a mighty God, and thankfully nothing is too difficult for him. One of the doctors told me that I can’t focus on the “what if’s” about Malachi’s future, and that I need to let that burden go. It is true, focusing on the unknown can drive oneself mad. I have to give it to God, although easier said than done. Please join with me in praying for Malachi. Pray specifically for Malachi’s growing and developing brain. Pray for his hydrocephalus, and shunt functioning. Pray that the PDA in his heart will be closed and not need surgery for correction. Pray for his lungs, that he will be able to breath, and not get so easily short of breath. Pray for his eyes, that his vision will be completely restored. Pray for his stomach pains, and reflux, that is so severe that he vomits. Pray for continued strength for mommy and daddy as we venture into the world and go to several doctor appointments. Pray that Malachi will not get sick, for we know even a minor cold could be deadly in our little fighter. Thank you for your love and support through this journey.

As you venture throughout your week, focus on Deuteronomy 30 19-20.

“Today I have given you the choice between life and death, between blessings and curses. I call on heaven and earth to witness the choice you make. Oh, that you would choose life, that you and your descendants might live! Choose to love the Lord your God and to obey him and commit yourself to him, for he is your life.”

It would have been easy for me to sleep away the pain when Michael died, or to refuse to truly live after finding out the prognosis of my son’s brain bleed; but I want to choose LIFE! When you have lost your joy, and your life seems to be engulfed in sorrow, look to the heavens for your strength. There is a land of blessings that God wants you to have, but he also disciples those he loves. We live in a world full of hardship and trouble, but thank you Lord that we have a hope and a future in you. Could it be true that the plan God has destined for your life, although it is not as you thought it would turn out, could actually be better than you could imagine for yourself? Choose life this week. May God give you eyes of faith so that you can see how satisfying life is when we die to ourselves, and choose to live for Christ. Thank you for your Prayers and love for Malachi. We love him SO much.

Picture credits to Quiver Tree Photography

Raising Malachi

Prematurity, Inspirational, micropreemie, 23 weeker, Loss of Twin, Faith

Tag: IVH

Adventures of a One Year Old Micropreemie.

A letter to my son on his first birthday.

It’s the small things…

My Shunted Hero- Hydrocephalus Awareness Month

8 month old Malachi: A Micropreemie’s Story.

Broken Seashells–A micropreemies first time to the beach.

Showing Malachi that life can be JOYFUL

Easter Sunday 2015

Journey to Home-a post from May 17th, 2015

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