Tag: Faith

Empty Arms.

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I watched my husband digging into the ground.

“I wouldn’t have imagined myself doing anything like this five years ago,” he uttered.

We laid marigolds down amongst the soil, poured water by your feet to help them grow. We talked about your life, and how you forever changed ours.

We gazed upon the beauty of your tombstone, and shed tears upon the ground. A labor of love, poured out from a mothers heart, who bears the burden of empty arms.

As we laid there above your body, we talked about your birth. The pain. The disbelief of your early arrival. We reminisced about the 25 days that you were alive. The forever imprint you left on our hearts. Our souls.


We talked about the child that you would be now. The bond you and your brother would have had. Your personality. And the little ways you sneak yourself into our daily lives.

We see you in the sun, the warmth that covers our skin. We feel you in the wind as it gently presses in.

We see you in the morning fog that fills the pastures by our home.

And in your brothers eyes, you live and breathe, and roam. 

We feel you among the rosebuds that are just starting to sprout. We feel you deep within us, your love comes pouring out.

You’re the joy that’s in my life, the dimple in my grin. You’re the spark of light that shines from my core within.

You are everything that’s lovely. Everything that’s good.

And if I could give you the world, there is no doubt that I would.

Although I cannot feel you or touch your precious skin, if I close my eyes tightly, I can feel you from within. Sometimes it is just a whisper, as faint as it can be. At other times like a lion, your love comes roaring out. 

For all the mothers living with empty arms, and hearts of sorrow. You are not alone. You are not forgotten.

You are deeply, and irrevocably loved. Cherished beyond belief by those that have since perished.

May you find a way to press through the darkness, to rise above your pain.
It’s ok to mourn, to grieve and cry. To feel misunderstood at times.

But don’t underestimate your strength as a mother, the innate power you carry.

There is a burden that you convey, that is often hard to hide.  But somehow we made it.  Forever changed inside.

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.

So hold your head high, even if it is only for a single moment.

Your arms are empty, but your reward is great. For our sons and daughter are in the very presence of Christ, awaiting our soon arrival.

This world is full of uncertainty and pain, I know this all too well.

Yet, unspeakable joy in around the corner, to soon make our hearts swell.

Hold on broken hearted; those weary and weak. 

Trust his word with all your heart. For he will make a way in the wilderness. He will bring hope and healing in the mist of chaos and confusion.

Your most deep and intimate worship will likely be in your darkest days-when your pain is great, and your heart is broken…when you are out of options, and you turn to God alone.

And like the marigolds that lay amongst my beautiful son’s grave, you too can be a beam of light in a sea of sorrow.


May you too find hope and healing this Mother’s day. May you find a renewed strength to get you through each day.

I love you Michael. No greater honor have I ever been given, than to be your mother.

2 Corinthians 1:3-5The Message (MSG)

The Rescue

3-5 All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us. We have plenty of hard times that come from following the Messiah, but no more so than the good times of his healing comfort—we get a full measure of that, too.

Adventures of a One Year Old Micropreemie.

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. 

But for what purpose?

MalachisMom5 Comments

There are moments in our life that we will never forget for as long as we live.

Mine is the moment that I watched the pinkness drain from his body.  

“He is with Jesus.”  Those are the only words I could utter from my mouth as his heart beat dropped to zero.  And in that moment my baby boy-my life-was gone.  My heart shattered into a million pieces.   

  

I felt a part of me die with you that day, Michael.

I remember how they removed your ET tube, and all the life sustaining equipment from your lifeless body, and how you laid so still in my arms.  So cold.  Yet, so beautiful.  Like a sleeping angel in my arms, covered by my tears which fell on your delicate skin.

And in that moment, all the dreams and plans I had for you; all my hopes, vanished.  

My heart poured out in mourning as I spent my last moments with you. As I tried to remember every detail of your perfectly woven body. 

I couldn’t comprehend it all.  How did we get to this point?

My hands were shaking as I handed you to the funeral personnel, and then as I begged for her to let me hold you one last time.  The last time my eyes would fall on you.  My last touch of your skin.  My last smell of your hair.  “Take it in Allison, don’t let this moment go,” I pleaded with myself.  “I love you Michael.”  “I love you, I love you, I love you.”  It was the only words I could form.  

  
My body was numb.  Grief overtook me like a raging storm.  And I had to deal with the burning question that fired through my mind and pierced my aching heart… But for what purpose? 

Why my child?  Why me?

These are the questions we must deal with when circumstances in life seem unfair and we feel broken and alone.  

When facing the devestating loss of a child, or raising a child with disability or any ailment, we often feel abandoned.  Our faith is tested, and our response to these burning questions reveal a lot about what we believe and who we believe in.  

I will never forget the morning of Michael’s funeral, and watching healthy children running and playing so carelessly before me.  And how bitterness filled my heart as I didn’t understand why Michael wasn’t given the opportunity to live.   

And at the same time my mind wondered to Malachi, whos weak body lie fighting to stay alive in a glass covered isolate.  “His life will be less than quality IF he lives.” The words of that doctor stung like salt to a wound.  In my mind I battled with this reality before me.  

  
In the midst of all my fears, grief, and questions I hide upstairs in my old bedroom that morning at my parents house.  I laid on the floor in a pool of tears until my husband came and found me. And together we gathered the strength to go and speak at Michaels funeral.  To give him the love and respect he so deeply deserved. 

In those days, weeks, and months following Michaels passing, I was in a state of utter despair and darkness. I was numb. Then I was angry. Every part of me ached.

I really wrestled with God over the plans that he choose for my life. In my earnest despair, I longed for answers.

In my search for comfort, I remember turning to the cross.

I began reading Hebrews 5:7-8 and seeing how Jesus, when facing the cross cried out to God the father-who had the power to make another way…but chose not to. And how Jesus submitted to Gods perfect plan.  A plan that included suffering and death.

It helped me to know that even Jesus Christ questioned the plans that God had for him. I knew that I was not alone in my feelings of great anguish.   It was in loneliness that Christ called out “My God my God-why have you forsaken me?” in Mathew 27:46.

But Christ followed through with the plan. A plan that would bring you and me salvation and eternal life.

It is because HE LIVES that it’s not over.  Michael and I will reunite again.  I will smell his hair and feel the warmth of his embrace.  It’s not over.  It’s not over yet. 

You see, Jesus took my place even though I am so undeserving.  He gave it all for me, and for you. 

And when death had a hold of Malachi’s life, Jesus breathed life into him.  He gave him life; abundant life. 

And while the future is still at large hazy and filled with uncertainty, I look to the Father to get me through each day. I don’t have to carry the weight alone.

When I feel overwhelmed with exhaustion because of therapy sessions, evaluations, and doctors appointments. When I feel like I can never take a break because if I am not working  on one of Malachi’s goals and milestones, then he might not have the best chance at life. When intense anxiety and fear of the future sneaks in to steal my joy, I shift my focus to the one who gave it all for me.

I count my blessings, big and small. I feel so blessed that Malachi is starting to eat more.  That while a month ago Malachi would vomit 1-10 times per day, and would gag at the slightest texture of food, that he is now eating several ounces of baby food, and starting to eat table food and drink from a straw.  That he is gaining weight, and has a desire to eat!  That while he has high tone in his legs, he can crawl and climb stairs, and I have no doubt in my mind that he will walk one day.  And while Malachi a few weeks ago never uttered a sound, my boy now says dada with such clarity, and babbles with intent. It may not seem like much to you, but to hear my sons sweet voice brings tears of joys to my eyes.  And even though Malach doesn’t say mama, he melts my heart when he lays his head on me when you say “give mommy love.”  He knows me.  He is doing things I only dreamed he would be doing. I have to remind myself that even though I can feel so full of doubt and anxiety, there is so much to be thankful for.   So much to live for. 

    
 
   
It is through His mighty hand that Malachi is alive. That while he may struggle in some areas of his life, he is progressing. He is thriving, and full of so much joy. I feel like I can see the very presence of God shining through him when he overwhelms me with his sweet and all consuming smile.

   
   
 
I often pray for continued healing over Malachi, but more than anything I want him to know the love of Christ.  To know of his grace, and his mercies. 

We still have a long road and many unanswered questions ahead of us. But through the uncertainties of life and pain, I remember Romans 8:28 when God states that he causes everything to work together for the good of those who love him and are called according to his purpose.

If you have ever been so consumed with those burning question, and are searching for purpose  and understanding in your pain, I want you to know that you are not alone.

In my search for clarity I will never have all the answers. I don’t know why Michael needed to leave this earth so soon. I don’t know why bad things happen to good people. Why innocent life is shed. And families are torn apart. And while I believe nothing comes into our lives that does not first pass through the sovereign hands of God-I know that we live in a world where sin has taken root and corrupted everything.

We live in a broken world. A world full of sin, sickness, genetic dispositions, and disease. And the world will continue to be broken until the return of our Lord and Savior.

But even in your pain, when life seems to be in ruins, your brokenness can be the pathway to usefulness. In fact, Jesus Christ showed what it meant to be broken and used by God in both painful and beautiful ways when we gave his life on the cross.

And so I kling to his promises. I choose to not focus on the temporal things of this Earth and to keep my eyes on everlasting things.

I also bind with those individuals who have walked similar journeys, who have been there and overcome.  Their support and love gives me so much strength during the moments I feel like a plane that is spiraling out of control.

And finally, I write. Writing for me is my outlet. It is the way I heal and mend those deep wounds. Thank you for letting me share my heart with you-my vulnerabilities and my pain.  We need each other to heal, grow, and love. 

   
 

A Bittersweet Christmas

MalachisMom6 Comments

Daddy is home, and the house smells of Frasier fir, with a tint of homemade chicken and rice soup, just like grandma used to make. YUM.

Malachi is crawling around the living room, and trying to pull up on just about anything he can get his hands onto.

Michaels white and gold Christmas tree is blaring in the corner of the room, and it is almost as if his very spirit is beaming.

This Christmas is certainly different.

I can’t help but feel like I am entering this Christmas with both feelings of absolute delight and yet, a great big pit in my stomach.

It’s hard to explain.

I don’t want to come off as ungrateful. In fact, just the other day, my mom said “I am so beyond grateful that Malachi survived…I couldn’t imagine life without him.” And that is exactly why I am overwhelmed this Christmas. Overwhelmed with gratitude that my sweet loving Malachi is HERE. But, there is also a hint of great despair as I enter this holiday without my precious Michael.

I am not going to lie. It is hard.

But, I refuse to let my despair dampen my Christmas spirit. Michael is in the very presence of our Lord and Savior, the very reason for the season.

Yes, my heart is so heavy; but then again- I am oh so grateful. So full from within.

This time last year I was very much “feeling” pregnant. In fact, I remember having a hard time just wrapping presents, with my big belly in the way. In a sense these memories bring joy…my sweet babies were safe inside of me. And yet, I also feel great sadness as I remember their little kicks and moves from within me, and how I would sing to them every night. I wish I could just hold onto those moments in time forever. I wish I could just feel Michael one more time…

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You see, in some aspects, I am overwhelmed with gladness this Christmas. With this newfound joy that is both tangible and felt with such depth.

Malachi is making gross motor strides that I could not  have even dreamed we would be seeing at this point in his life.

He had an amazing MRI report last week. One that showed his ventricles in his brain have gone back to normal size, which the doctors told us was not possible considering the “vast damage” that was caused from his intraventricular hemorrhage at birth. His brain is growing, and he is learning new things every day. We cannot help but feel so grateful for the miracles and progression we have seen in his life.

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We have even started new-fangled traditions, such as cookies for Santa, Christmas pajamas, and giving to a child in need in memory of Michael.

We have had fresh memories to cherish, like picking out a Christmas tree with a baby on my hip, and trying to adjust to a baby that is suddenly mobile, while ornaments are just screaming to be touched and mangled, and stockings are begging to be pulled off the shelf.

Its fun. It is exiting, new, and fresh.

There are wonderful things that are happening this Christmas, and even so, there is also a lot of heart ache.

Not just for me, but for so many families entering this holiday. So many people that have a heaviness in their hearts. A spirit that is crushed. There are people that are hanging on by the grit of their teeth.

You see, just a few miles down the road, there is a beautiful black headstone adored with a white tree and ribbon where a little boy rests. This little boy should be joining in on all the fun, the traditions, and laughter. But instead, his mother’s heart and arms are left with an emptiness that only his presence could fill.

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Right now I know of a little boy that is going to spend Christmas in a hip cast that severely limits his mobility. There are babies in NICUs and children in PICUs all over this country. There are people who are out of work, and those that are struggling just to pay their light bill, let alone Christmas presents for their family. There are mothers who are grieving the loss of their children, and mothers wondering if their child will even survive until morning. There are broken families. There is real pain. Real fear. Real hurt.

We need a perception change.

YES, Christmas is a season of spending time with your family. For parties, and gatherings…and sharing memories and laughter with the ones we love. But, it is so much more.

My fear is that we will leave Christmas morning with torn wrapping paper, the greatest gifts imaginable…with stomachs that are full and content…and hearts that are left empty and unprepared.

So many of us are living with our “visor” or “shades” on. These are the things in our lives that keep us solely focused on OUR life and OUR problems. We all need our visors ripped off in a sense.

This is my hope for you this Christmas.

That you will see beyond your daily interactions and feelings, and begin to search for God’s love and grace in your life like never before.

We are called to be the light of the world. To demonstrate love, just like our father, whom shows us the greatest love of all. I pray that you will enter this Christmas and New Year with a greater love, and purpose.

Lord, give us hearts to embrace the plans you have for our lives, so that we can accomplish what YOU have in mind. Give us eyes to see the hurt and fragile people in our lives. To reach out beyond our families, churches, and comfort zones…and to grow in a deeper and richer relationship with you.

Lord, let our eyes stay focused on you, so we don’t get distracted by appearance, possessions, and social media propaganda. For we know that these things mean nothing if our lives are not one of purpose.

May our lives be fruitful in your eyes. And even in the all the commotion of the holidays, let us still make the time to honor and glorify YOU.

Lord, you are the great comforter for all those that are weak and weary. You see me in my brokenness, and desire to mend my heart, and make it a vessel for your usefulness. You see the worries I have about Malachi…his struggle to eat, and communicate.

You see the void that is in my heart as I face this first Christmas without Michael. You know it all. And you care, so deeply.

To all those that are hurting this Christmas season, you not alone. But through HIM, we are more than conquerors. Within our souls we have great love and purpose just waiting to be ignited. Behind our layers of scars and wounds, there is real strength, laughter, and joy.

Take time this season to mourn and cry…but also allow yourself to feel goodness. There is greatness within us all, we just have to unleash the potential that is inside.

Merry Christmas to all, whether bittersweet, or filled with cheer. We all have something to celebrate this year.

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It’s the small things…

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.

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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…

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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…

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

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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.

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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.

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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.

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…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.

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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.

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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.

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WE love you Michael. Always.

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.

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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.

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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.

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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….

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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.

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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.

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My intention. 

MalachisMom1 Comment

I hope you don’t mind my vulnerability and rawness.  

“Lord, please don’t give me a child with special needs.” 

I’ve prayed this prayer. 

“Mothers of children with special needs are courageous and well equipped. I’m not strong enough for that” I thought. “God will give me healthy children. I am his child, and I am blessed and highly favored.”   

Have you ever wondered if Gods plan for your life could actually be greater than what you imagined for yourself?  Yes, you may have to suffer for a little while, but what if that suffering gave birth to new life and purpose?

My intention after suffering grief is to love harder. To not take things for granted. I am a not the person I was before grief, nor would I ever want to be. Losing Michael took something from me. It ripped me to my core, and made me question everything in life. At first it made me bitter, but then my heart was softened and my burden was lightened. I was made for this moment. I needed to be stripped of all pride, to be broken down from within-so that I might know how to truly rely on the Father.  

So where do I go from here? My hope is to help others realize that Gods grace is enough. That even in your darkest hour, his love is sufficient, and his mercies are new. Yes, it is unfair. It aches to the core. But, with great pain, there comes great triumph and healing.

My intention is to turn my pain into something well formed. I will never take Malachi’s life and his abilities for granted. Yes, his life involves struggles, but he is alive-he is my child and he is loved. Forever he will be loved. I am a mother of a child with special needs. You make it because you have to, not because you are “strong.”

I am a mother of a child that died in my arms. I have grieved until my heart felt shattered. I have cried enough tears to fill the oceans deep. But I am here, and I have purpose. My intention is to be more than a survivor, but to be an overcomer-through Christ. This is my intention. 

My calling is more than just writing. If you would like me to speak at a small group at your church, an event for grief support, a Wednesday night class or service-please contact me at allisonstone0422@yahoo.com.  I would love to share my story, about how God has given me new life, even in the mist of bitter suffering-and how he can do the same for you.  His grace is enough. Period.  

Dear grieving mother…

MalachisMom1 Comment

Dear grieving mother,

It’s ok to cry hysterically-to grieve with every piece of you. 

Your child is worth that.

The world moves on, but your world stands still. It is haunted by tiny caskets, empty cribs, and unspoken lullabies. So cry…
Release those stored up tears. 

I know you feel crushed with despair, like you can barely catch your breath, but surely I tell you, there is a day coming soon. A day when you will meet again. And hold them in your arms. 

But until then, it’s ok to lose yourself to tears. 

It’s ok to cry.
Sincerely, 

A mother that understands. 
 

Michael Scott Austin 12/28/14 – 01/21/15
 
I lie here on the floor in a bath of tears, my body violently shaking…

That’s the thing about losing a child-you are fine one moment, and then it hits you like a punch in the chest-they are gone. 

My husband lifts me off the floor, and tries to heal the pain with words. But I’m broken. A piece of me is here, and another far away. I am living and breathing, yet gasping for air.

Time does not heal these deep set wounds. Those wounds get covered up over time, but the scab is ripped off over and over again-leaving tissue that is open and fresh.

And I am left feeling the way I felt the day I said goodbye…the day I watched the pinkness of your skin drain from you. The day you took your last breathe.  

I try so hard to keep it locked away inside, but moments of despair creep in like an unexpected rain storm. 

I try to see the beauty in the life I hold so dear…but as I lie here next to my baby-I can feel your absence. I can feel the void. I long to have have you near. 

Each day is another day without you. A day my son has to live without his brother. A mother without her baby. A father without his son.

The pain is ever present. It is ever changing, yet always the same. 

Tomorrow I will get up and face the day ahead…but a part of me is gone. 

I am…but I am not. 

I miss you Michael Scott Austin. 25 days…25 days with you was not enough, yet it was everything. 

   

‭“He heals the broken in heart, And binds up their wounds.”

‭‭Psalm‬ ‭147:3‬ ‭

Broken Seashells–A micropreemies first time to the beach.

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.

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Who am I kidding? THIS is my favorite view!

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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!

Sleepy baby boy.
Sleepy baby boy.
Malachi enjoyed napping with mommy. He is such a snuggle bunny.
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.
Just me and my mommy.
Just me and my mommy.
First night out for dinner at the Sea Captains.
First night out for dinner at the Sea Captains.
These blue eyes...
These blue eyes…
Toes in the sand.
Toes in the sand.
The waves are my favorite.
The waves are my favorite.

I wish I could give you an update on Malachi’s weight, but he hasn’t been weighed since his check up on June 30th. 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.

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

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… 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.

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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…

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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

Finding Joy & Learning to Love after Loss.

MalachisMom2 Comments

I will never forget the day your heart stopped beating, and mine kept beating…. The day I had to learn to live a life without you.

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I recall the first day that I went out into public after Michael had passed. I thought “I don’t know how to act. Do I smile as others walk passed me? Do I pretend like everything is alright?” I was scared to laugh. Scared to smile. I was afraid that my laughter would portray that my grief had passed; or worse, that I didn’t care about the loss of my son. Going out into the “real world” outside of hospital walls, monitors, and constant worry seemed unrealistic. I would hear people talk about their “problems” that seemed so inconsequential—and it would almost anger me. Learning to laugh, and have complete joy after losing Michael, and dealing with such a medically fragile child has been a challenge at times. But, I have been able to find joy, even in the core of grief. My smiles and laughter come much more easily than they used to. I like to think of them as a way of saying “I may feel like I’m drowning inside, but grief has not destroyed me”.

Thinking of the first day back to work since the twins were born, I recall how nervous I was—but I remember thinking, I just need to show people love. It was amazing how the Holy Spirit comforted me that morning as I drove to work. I thought, “God has given me the ability to love, and that is what I want to do today.” I had read the word that morning and came across the scripture

“” I pray that your love will overflow more and more, and that you will keep on growing in knowledge and understanding. (Philippians 1:9 NLT) “

I thought “wow—Lord let your love overflow through me today.  There was a lady that had delivered a set of twins on our unit.  I remember hearing the word “twins”… my heart sunk—a vivid image of a future of Michael and Malachi, my hopes and dreams for them flashed before my eyes. I thought—she is so blessed, and I really wanted to talk to her.  She called out for something to drink, so I took it to her.    We were talking, and I briefly shared with her my story about losing one of my twins.  I admired her two precious babies in the bassinet beside her bed.  We cried together and something she said stuck out in my mind—“I would have never known all that you have been through—you seem so happy.”  The truth is, I was hurting—seeing her healthy babies made me long for Michaels touch so deeply; but it was also healing.  I was forced to face my reality, and celebrate with this new mom in the midst of her elation.  It is true, joy can exist even in the center of immense sorrow.   In fact, great sorrow can actually expand our ability to have joy.   When you lose something so precious to you, you learn to love deeper and harder.  You learn to let go of your expectation of happiness, and find happiness in each and every moment. 

We are called to rejoice with others in their blessings in life, and mourn with those when they face devastating loss. We are called to LOVE.

“Above all, keep loving one another earnestly, since love covers a multitude of sins. Show hospitality to one another without grumbling.” (1 Peter 4 8-9 NIV)

“Beloved, let us love one another, for love is from God, and whoever loves has been born of God and knows God. Anyone who does not love does not know God, because God is love” (1 John 4 7-8 NIV)

One thing I have learned after the loss of a child is that many times people just don’t know what to say. Have you ever felt that way after experiencing intense grief? That nothing anyone could say could make things better? That you would almost rather them say nothing at all— than simplify your pain; or pity you? You really never have the “right words” when your soul has not felt such anguish.  No one could fathom the numbness and sting that simultaneously overtook me when I had to carry my dead baby to the morgue, say my last goodbye, or hand him over to the funeral personnel; and I don’t expect anyone to. These are the events that make my story of grief unique to me.

It is through my own personal relationship through Christ, and reading his word that I have been able to move forward and not only survive, but emerge from my suffering. It is through reading what he says about loss & overcoming immense pain—and applying it to my life—that I have learned to LIVE again.   It is through connecting with others that have experienced loss, and lifting each other up in with our words and actions. It is purposefully choosing each day to find Joy—and focus on our victory through Christ.

“No, despite all these things, overwhelming victory is ours through Christ, who loved us” (Romans 8:37 NLT)

After loss, the worst thing someone can do is pretend like the child never existed. Believe me, we want them more than anything to be REMEMBERED. They are forever our child, and not a day could ever go by that they do not come into our memories existence. It is through our verbalizations of them, through our memories, and momentums that they remain alive to us. It is both healing and therapeutic to talk about our babies that once were. Just this week I filled my house with pictures of both Michael & Malachi. I love seeing his face every morning. Does it hurt? Yes; but he is my child—and I want him to come up in conversation. I want people to grasp a glimpse into just how wonderful he was. I want Malachi to grow up knowing his brother. We long to be with him; but until we meet again, we will purposefully choose to be happy—to love deeper, to smile & laugh.

“Our hearts ache, but we always have joy. We are poor, but we give spiritual riches to others. We own nothing, and yet we have everything. 2 Corinthians 6:10

I love the last part of that verse—we have everything. It is true, when Christ is in the center of our heart, we do have everything. It is through laughter, smiles, & joy that we proclaim—Grief will not overcome; my hope remains in Christ! He is our only hope in this fallen world.

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We love you Michael! We miss you more than you will ever know.

Healing Tears–Overcoming the loss of Michael

MalachisMom3 Comments

I walked in the living room a few nights ago to my husband crying, and holding a photo of Michael.   I sat beside him, as we wept for our son together. The heaviness of our hearts-like a large dumbbell sitting on our chests. It was hard to breathe. A great America Author, Washington Irving, once stated:

“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love.”

-Washington Irving (1783 – 1859)

I find it most therapeutic to let my tears flow; it is as if I am releasing some of the pressure from the pain that is stored up. Some days it seems as if my storage of tears is an overflowing river; one that cannot be contained. The remarkable thing is, my heavenly father is my tear collector. Indeed -“You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.” (Psalms 56:8, NIV). Among many things I have learned through the loss of a child, I have learned that it is ok to be sad. Tears can be healing.

I remember so intensely the way I felt the day after Michael passed. I remember waking up, and feeling as if my stomach had been punched in the gut. I felt robbed. I recall holding my abdomen, crying; and saying repeatedly “I just want to hold you one more time” “I just need to feel you one more time” “I don’t understand.” Tears like streams fell, and I never thought I would be able to move forward. The truth is, one more hold, one more touch still would not have been good enough. I closed my eyes and tried to remember what it felt like when I held him for the first time; the softness of his frail skin; the smell and feel of his fuzzy blonde hair. My recollection of him was so vibrant; yet not satisfying enough—skewed by the images in my mind of his cold lifeless body. I prayed—“Lord, let me remember him as he was; let me see him as you see him-whole, healed, and new.”

The stages of grief for me were skewed; how could I adequately grieve the loss of Michael, and still stay strong for my child a few pods down in the NICU, fighting for his delicate life? I do however remember the stage of anger. I feel ashamed, but I remember being angry with God. I remember thinking; “how can I trust someone that let my child die.” I knew God had the power to heal my child; so why didn’t he? I had such immense faith that God was going to completely heal my Michael, and I felt cheated when his life was taken so abruptly from this world. I think about all the things I wanted him to experience in life…simple things, like seeing an ocean sunset, listening to music on Sunday morning with his mommy, playing outside in the yard with his daddy and brother. It did not seem fair that I had to be a part of “twinless” support groups, instead of support group for mothers with twins. Every time I saw a set of twins, or twin strollers, an articles about twins-my stomach fell into knots; knowing that ultimately this was not the life journey I was supposed to have.

Thankfully, even in the center of this tragedy, God has shown me his power, peace, and presence. I will never have all the answers I am looking for, but his holy spirit has given me peace and understanding that has allowed me to emerge from such bitter suffering. I had to let go of what I thought my life should look like, and know that ultimately God has a divine purpose for my life. Although my earthly mind cannot comprehend why I am not supposed to be the mother of healthy twin boys, or why Michael was not supposed to live—I cannot lose faith. I cannot lose hope. Undoubtedly, a life without God is just merely living. What I have learned is, whatever suffering God allows in your life—he has also given you the ability to emerge; with both faith and a future. Paul pleaded with Christ in 2 Corinthians 12 7-9 :

“I was given a thorn in my flesh, a messenger from Satan to torment me and keep me from getting proud. Three different times I begged the Lord to take it away. Each time he said, my gracious favor is all you need. My power works best in your weakness.”

Furthermore, absolutely nothing can separate us from the love that Christ has for us.

“Can anything ever separate us from Christ’s love? Does it mean he no longer loves us if we have trouble or calamity or are persecuted, or are hungry or cold or in danger or threatened with death?” (Romans 8:35).

Although we live in a world full of brokenness; one thing remains the same—the love that Christ has for us is beyond measurable by any earthly means. A sacrificial love—“God demonstrates his own loves for us in this: While we were still sinners Christ died for us” (Romans 5:8).

I am comforted that Michael is seeing things far more beautiful than our earthly sunsets, and he is experiencing the sounds of God’s heavenly orchestra of praise among the angels. He is in the very presence of Christ, and does not have to ever experience the awful heart wrenching pains of this world. He has been spared from the evil that this life has to offer. An amazing author Nancy Guthrie once said, after losing her daughter, Hope, to a fatal genetic disorder….

“I don’t think it is a tragedy that she will have the opportunity to be spared from evil from the pain of this life, and be in the presence of God.   This is what I believe. It is not necessarily how I feel. But believing this makes a difference in how I feel.” (Nancy Guthrie, 2005)

It is true, it does not make that ache any less to know that Michael is gone; but knowing that he is in the presence of Christ can change the way I feel.

On Memorial Day this year, Jake, Malachi, & mommy went to Michael’s grave. It was the first time we were all together as a family. It was a very emotional experience, and we spent much time in prayer; and talking with our Michael. Jake and I always refer to Michael as the sun. On sunny days, we always say it is Michael shinning his face on us. It was very warm and sunny that day; and I could almost feel the warmth of his body when I closed my eyes. I imagined his sweet arms embracing me. What a glorious day it will be when we are reunited

Lord, I pray that you would give me a heart that embraces the plans you have chosen for me. We continue to pray for Malachi—and the complete healing of his brain and body. We know that you are working miracles in and through him every day. Thank you Lord for allowing me the absolute privilege to be Malachi & Michaels mommy. It is through you that all precious gifts are given—and my children are certainly the most precious gifts of all.

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