Sometimes I lie awake at night thinking of all the things I want to say.  It has been far too long since I put pen to paper, or fingers to keyboard in this case, and my soul has longed to bear its pains, and joys, triumphs, and failures.  Life is busy, as you all know.  And usually my own selfish desires to relinquish these thoughts take a back seat.

So tonight I won’t present all that has come to fruition in the past couple years.  But I will share bits and pieces of what our life is like now.  And what better place to start than Mother’s Day…

I woke up this Mother’s Day and the first thing I saw out of my window was a Cardinal.  Oh my sweet Michael…I mumbled under my breath.  What a sweet reminder of how God orchestrates even the small details of our lives.  My husband  snuck out with the kids that morning and surprised me with my favorite breakfast. I even got to sleep in a little later, which is a rarity with two little ones, and a third baby on the way.  If it’s not my youngest (19 months) calling for me at 2 am, it’s my pregnancy bladder keeping me up at all hours of the night.  Life with my boys has been such a humbling and adventurous journey.  I wake up, and need to seek God each day to handle all the small and grand moments that raising toddlers can bring.  But God always equips me, and gives me the strength and guidance I need.  Thank goodness his grace and mercies are new each morning.  So often I feel as I fail, but in my calling as a mother I find it of great responsibility to lead my children to live honorable lives, and to preserve their childhood the best I can.

Malachi has grown so much since the last time I wrote, I barely know where to begin.  Sometimes I get so overwhelmed with emotion thinking about his life journey.  There have been so many times he had to be brave.  He had to endure.  But through each life experience, he has molded into such a bright, tender four year old.  He asks more questions in a day than I have answers.  And his thirst for knowledge is unquenchable.  It is hard to believe that the boy I once cried over, who barely spoke a word until age 2, is now never at a loss for words.

I recall an evening of holding Malachi in the special care nursery at the hospital.  Malachi was about 4 months old, and by this point we were preparing to take him home in the near future.  It was during this time I was reminded time and time again of the struggles he would face as he grew older.  His bulging VP shunt from his small head, the frequent “only time will tell” responses from doctors, and the brain scans that showed irreversible damage-all a reminder to me of the long and challenging road we had ahead of us.  But as I held that baby in my arms, who at this point felt quite large after once cuddling his 1 lb fragile body-I remember praying out loud, praying fervently for his future.  There is so much power in our words.  I wanted to be sure my words would reach heaven.  Even though I was given very little hope for a future-I recited “Lord-Malachi will live and not die” “you have given him a hope and a future.”  I prayed that no matter what challenges lie ahead-he would be used by God in a mighty way. I prayed for healing-but I also knew that ultimately Gods plan were higher than mine.  We would face the days that lied ahead and overwhelm him with love along the way. We were not always brave, nor strong, and sometimes our faith was hard to gather…but HE remained faithful in our circumstance.  Always supplying our needs.  It has not been an easy road.  Malachi still has therapies that help improve his fine motor coordination, his high muscle tone, and feeding independence and abilities.  Even so- Malachi has been called a miracle by many in the health profession.  It is hard to look at his early brain scans-indicating blood filled ventricles, swelling and dead tissue-and to look at him and see his abilities.  He can run, and jump.  He is passionate about reading, so much so that we could sit and read books for hours at a time.  He is the most curious kid I’ve ever encountered.  But more importantly,  he has a sweet spirit, and a kind heart.  I can’t quite put my finger on it, but I think most people that have spent a considerable amount of time with him know that there is just something special about him.  A quality you can teach, but one that God placed inside of him.

He is eating more, and chewing better than he ever has before.  And even though we need his Gtube to supplement his feeding, and to administer medications for his chronic bowel issues-he has made such immense progress this year.  Anyone that has specific questions about his G-tube, or feeding issues-we always welcome questions and are very open about his struggles.  As he is getting older I try to limit too many details to ensure his privacy-but I don’t mind sending private messages.

Malachi is also a pretty incredible big brother to Noah.  And yes-they fight and get “rough” sometimes-but the bond they have is so special.  I mean, before bed tonight Noah practically cried for a goodnight kiss from his brother.  Noah is such a ball of personality.  It has been very eye opening raising Noah after going through the trials with Malachi.  I remember coming home from the hospital the next day after he was born thinking “this is just too easy!”  He has always reached milestones super fast, and talks nonstop-something I wasn’t prepared for after having a practically nonverbal one year old while raising Malachi.   It almost seems unfair to even compare the two.  But they could not be more different.  Noah has the sweetest gap toothed grin, and loves to eat “snacks” ALL day long.  He tells me “I wanna try I wanna try” every time I eat around him, wants to see the “moo cows” every morning, and thinks he can get “chockey” (chocolate) every time Malachi goes potty. He has brought a lot of love and laughter into our lives, and has given Malachi a forever friend.

As I reflect on my life so far, I feel like life truly began for me when I became a mother.  We tried for 2 years to get pregnant.  We were told at one point I had “unexplained infertility.” We tried medications.  We had a miscarriage.  We have held a lifeless little boy in our arms.  A boy we loved more than life itself, and buried him in the ground.  Jake and I have  grown as a couple.  We have fought, and wept together.  We have grown in love through life’s bitter moments.  We have been through devastation and triumphs, and have seen God work in and through our darkest hour.  One thing remains unchanging-God is good.  He is faithful.  He is loving.  As we prepare to welcome a third child into the world we pray God guides us as he always has.  I am always anxious with my history of preterm labor.  But, as a friend of mine always says, and a mother of a former micropreemie herself-“faith over fear.”  We will face life’s challenges knowing that He will equip us.  So to whomever is still reading this, God bless you.  Life won’t always be perfect.  Life is messy.  But He is always there to lead us.  To pick us up. And to remind us who we are in Him.

I write because I don’t want to ever forget.  

I don’t want to forget your unmistakable laugh, and the way you always squeal with delight after bath time. Or the way you want me to read the same book 10 times in a row.  

I don’t want to forget the way you play so fervently with your toys-like you are on a mission as you roll your balls & trucks around on the floor, or how you enjoy hidng in you tent from the “bear” (daddy) and laugh so hard when he finds you.  

I love your quirks and all the little things that make you, YOU-like the way you are obsessed with feeding me with your spoon, or how you have to look out the window each morning to see the cows when the sun comes up. Or even your new found delight in Barney and Curious George. 



I think it’s adorable that you tell everything “bye bye” in the house before we leave to go somewhere, and how you think anything that is shaped like a circle is a “BALL!” I adore the bond that you have with your grandparents, and the love you so passionately display with your cousins.  

I never want to forget the preciousness of your voice that I waited so long to hear. Or the way you become completely mute in a crowd of people, as if you are taking in every piece of this great big world.  

I never want to forget your tenderness, and how you immediately pop up to give someone a hug (or lay on them) if they say they are hurt. You have such a big heart, and an empathy like noone I have ever seen.  

I love how if I ask you what color something is, it is always “red” and how you bring me books-and plop into my lap saying “read read read.”  

I never want to forget your love for all things outside, or how you get super silly and make the funniest chuckles when you have stayed up passed your bed time. Or the predictable way you always manage to end up in mommy and daddy’s bed by morning. 

You make me laugh every day, and fill my life with such fullness I could burst. What a gift you are Malachi.

You see, all these markings in my digital wonderland are a storyline of you, and the bliss you bring to our family. We never knew how incomplete our lives were until the day you and your brother were born. You fit so perfectly into this imperfect mess-and together, we create a beautiful canvas of love.

This blog was originally created as a form of written therapy for myself. As I wrote about my fears, and shared stories of your early birth, the heaviness and pains I kept locked away seemed to loosen their grip. I saw the way others could relate in their own despair. I have had people reach out to me from different outlets, letting me know how my own purging of guilt and anguish somehow helped them. And for that, I am forever grateful. 

 Healing from the trauma of giving birth at 23 weeks and child loss has been slow, and demanding at times. We all heal in different ways and follow different time tables. But for those who have followed our journey-we are just so thankful to have you along this bumpy road with us. Through our trials & successes-so many of you have been there loving and supporting us with your words of encouragement, your prayers, and notions of affirmation. As we count our blessings this new year, we are so grateful for you.

I know it has been a while since I have written any reasonable update on Malachi and how he has progressed this past year. The truth is-this mama is tired! (chuckles) But it is the truth. I have a nonstop toddler on the loose, who is not only typically busy-but also a little bit more medically challenging than your average two year old. Did I just say two year old? Yikes!

Yes-Malachi just blew out his candles and celebrated his second birthday. This day has been long awaited, and we (including Malachi) were just a ball full of energy and happiness this year around. 

It is pretty amazing how God has brought so much healing to my soul. 

December 28th was the most traumatic day of my life. Having my water break at just 23 weeks gestation. Being rushed into labor and delivery-and ambushed by a (excellent) squad of nurses and doctors trying so desperately to stop my labor. Having my family come in with tears, and the unspoken look on everyone’s faces that screamed fear.  Being rushed by an ambulance to another hospital that could try to save my babies, all along while intense contractions summoned what would soon come to past.

Having only four short hours to prepare to give birth. Being denied an epidural because of the risk. Enduring multiple exams, and being pumped with medicine to try to slow my labor without success. Being told my babies would not live. And that if they did-their prognosis of ever living a “normal” life without disability was without promise. 

 Seeing my husband crying. The shrill of my own screams. The pain. The birth. It is something that changes you. Forever. 

 And yet, on this day—this year-it was the most joyful of days.

Malachi was able to understand that it was his birthday in a sense. He was so full of bliss, and so overjoyed to see his cousins that he was just running around the house squealing and laughing.

I say all this to say that God makes all things news. He turns weeping, sorrow—even trauma, and redeems it all. He brings healing and purpose. He brings goodness and light-even out of the pits of darkness. He is a good Father. And there is not a day that goes by that I do not give him all the glory for saving Malachi’s life. For holding my hand through the intense grief that followed from losing Michael-and for giving Malachi a quality and fulfilling life.

As we embark upon this New Year-we do want to take a second and remember those moments that took our breathe away in 2016.

2016 is the year that Malachi started to communicate. Months and months went by, and so many tears were shed pleading to God to allow me to hear my son’s voice.

He was always a quiet baby. He babbled some, but I wouldn’t describe him as an avid talker. Although he didn’t say much, he sure did have the BEST expressions. His smiles and giggles have lit up our world from the moment he first showed those double cheek dimples. 

It wasn’t until he was 17 months old (13 months corrected) that he said “mama” for the first time. This certainly was a highlight of the year. 

We never underestimated Malachi’s understanding of language. He has always been able to follow commands, and a very good listener. But we began to question if he would ever verbally communicate. 

In fact-we were told early on in Malachi’s life that he would not be able to talk. That the part of the brain that was affected from his hemorrhagic stroke was in an area where language was processed. Slowly but surely, over the past few months Malachi has started to expand his expressive language, especially to his mommy and daddy. 

He has been in speech therapy for about 4 months, and since then he went from only saying about 5 words (mama, dada, car, ball, bye)-to saying recently around 50 words (estimated).  I don’t say any of this to boast. Lord knows we have worked without cease to increase Malachi’s verbal vocabulary-but I say this to hopefully encourage some other micropreemie mamas that their child may be having a slow start. 

Some of the words Malachi says are not spoken with great articulation (for example, he often cuts off syllables or sounds at the end of the word)-but he uses these words consistently when communicating his needs. He may say “fa” for fan, or “baw” for ball-but he gets his point across. In fact, many of the things Malachi says I may understand or Jake may understand-but unless you are around him often, you may not.  His therapist also says he may have a mild case of apraxia-that we can’t rule that out just yet—but we are praying that he is just slightly delayed, and that he will in time catch up. 

As his mommy—and his biggest cheerleader—I am just SO glad to hear his little voice. There is no sound more precious to my ears. 

Based on Malachi’s actual age, we have a long way to go until Malachi is caught up to his peers in language. But boy-when you look where we have come from-the progress is nothing short of a miracle. Malachi communicates his needs in his own way. He definitely knows how to get his point across. And even though he is quiet in environments outside of his home-he is a smart little boy-who is often taking everything in.

Our goals for speech therapy this year are for Malachi to communicate in two word phrases. He has on occasion said a few phrases-“that ball” “no mama” “whats that”…but these moments are few and far between. And of course that he will be able to articulate more words. 

A “typical” child from 18 months – 24 months has 50-200 words (of course there are some kids that will fall above and below this margin). Malachi is 20 months corrected, and falls into the lower end of that margin. However-it is just recently that he has seemed to have this “language burst,” and we are praying that we will see nothing but progression as we move forward. 

Prayer for SPEECH for 2017 is on the top of the list this year, as well as FEEDING.

As many you know, Malachi has a little feeding tube in this tummy. I have a blog post explaining why we initially needed a feeding tube if you want to search g-tube in the search box. After seeing specialist at UNC hospital, we have since realized that Malachi’s feeding issues stem much deeper than an oral aversion.

Malachi has an invisible disease. In other words, unless we show you his g-tube, or you spend an entire day with me, watching me give nutrition, medications, and care to his g-tube, you really wouldn’t know it was there. 

Malachi is on four different medications, two of which are given three times a day. Malachi’s feeding schedule and care is demanding.  Malachi has severe reflux, gastroparesis (which also causes delayed gastric emptying), chronic constipation, and oral sesitivites/aversions. In other words-his GI tract digest food very slowly, and he vomits VERY easily. Not only is it hard for Malachi to eat, but it is hard to keep food down.

I am often asked about Malachi’s eating, and I usually give a short answer-or just say “he is making progress, but it is slow.” The reason is because-this kid is complex. And this is a journey that we, and our team of feeding specialists, are on together. The medications that Malachi are on have allowed him to start eating again by mouth, but due to his oral sensitivities he mainly eats purred “baby” food (or homemade blends), or soft foods such as Cheetos, noodles, cheese, soups, potatoes, etc. 

Earlier this year Malachi was 100% G-tube fed. Since starting medication and feeding therapy with UNC, we are now about 60% gtube fed, and 40% oral fed. After our next “wean” he will be about 50/50. The good news? Malachi has a desire to eat. He wants to try new things, even if he sometimes cannot chew it completely or starts gagging due to the hypersensitivities in his mouth. We use lots of techniques to assist Malachi in eating but it is a process that takes time and a lot of therapy. 

 Malachi cannot tolerate more than about 3-4 ounces of food/liquid at a time without vomiting due to his gastroparesis. He digests food very slow, which requires me to feed him several small meals throughout the day. If home weaning is not successful, our specialists have considered letting Malachi be a part of an intensive feeding program in either Georgia or New Jersey. This type of program would be a 6-8 week full time commitment, and would require me to live in that state until the program is completed. We are trying to avoid this route-but it is something we may consider in the future.

Ultimately our goal for 2017 is to have Malachi 100% oral fed, and gtube free! Having your prayers during this time of weaning, and therapy appointments truly means so much to us. This is not an easy thing. In fact, it is the hardest thing we have faced with Malachi outside of the NICU walls. But we know that Jesus Christ is the great physician-and he walks with us daily.

I tell you all of this because I know there are people that don’t understand Malachi’s complex needs. Not in any way do I want pity for raising a son with special needs. It isn’t always easy, but caring for Malachi is in no way a burden. Malachi is AMAZING, and handles therapies, appointments, and all my work at home with him like a champ. 

It came up in conversation with a lady that my son had a feeding tube, and she gave me this look of sadness, as she told me how sorry she was. I told her not to be sorry one bit-because Malachi has made leaps and bounds-and it could always be SO much more challenging.  

Malachi radiates joy-if I have to work a little harder to ensure he has the nutritional needs he requires to grow-then I will gladly do it. I mean look at this kid-pure sweetness! 

In terms of mobility, Malachi started walking this year—another one of those monumental moments we had only dreamed about. Once again, Malachi defied the odds when he took those first determined steps towards me, making my eyes swell with so much delight. 

Today he is a running, climbing wild man, and I wouldn’t change it for the world! He does have slightly high tone in his legs, which makes tasks such as going up and down stairs, and jumping more difficult-but these are the things we are working on currently. Malachi’s PT sessions have been reduced to 1x per month-with plans of eventually discontinuing these services altogether.

Malachi has also made HUGE strides in fine motor development. When we first started OT services we had to be seen twice a week due to his deficiencies. Malachi was later changed to 1x per week after his 6 month review, and after his latest evaluation he will only be seen 1x per month! Malachi can do simple knob puzzles, stack blocks, scribble and draw lines with a crayon, take off shoes/socks, and self feed with a spoon. Goals for 2017 include self dressing, stringing beads, improvement in prewriting skills (drawing circles, etc), and overall improved hand/eye coordination.

Having OT and PT services less frequently can give us more time on focusing on his speech and feeding needs.

We can’t forget that Malachi has also been almost two years without needing a shunt revision. As many of you know, Malachi has a VP shunt that drains fluid from his brain to his tummy. He has hydrocephalus as a result of his brain bleed that he sustained a birth. We are thankful that out of all the surgeries he had this year, brain surgery was not one of those! Thank you Lord.

Cognitively, Malachi has always scored above average during testing. He is a smart boy, who has to work a little harder in doing things. But boy does he accomplish each new task with a great big smile on his face.

Besides numerous therapies, appointments, and a whopping three surgeries this year-Malachi has been on adventures both near and far. From the beach, to the mountains, parks, and museums—Malachi has made his mark on this world in more ways than one.

He has overcome obstacles, and climbed more mountains than most two year old boys-but he is surely the greatest blessing I have ever known.

Jake and I experienced pregnancy loss this past year, and still have hopes of expanding our family one day. We have had the highest highs, and some lows as well-but we count ourselves as blessed. God has been faithful in supplying our needs, holding our hand through trials, and restoring our broken hearts.

A distinguished Japanese author, Haruki Murakami, once stated the following…

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what the storm’s all about.”

Many times when the storm is over, you can’t even remember how you made it. How on Earth did we even survive the trauma of giving birth to twin boys at 23 weeks? Watching them struggle each day just to survive? Watching our child die, and having to bury my precious baby boy at just 23 days old. Those moments in my life were so dark. So painful to reminisce; and yet, looking back on the other side-I feel so full of peace. Yes-I have days where the memories swarm in like daggers into my mind. Nights were I cry myself to sleep thinking about my final moments with Michael, or the countless struggles Malachi has faced. And who is to say that the storm is really over? Life can change in any moment’s time. But with all the uncertainty of the world there is one thing in my life that is a constant-and that is Jesus Christ and his unwavering love. Jesus Christ comes offering a promise that is rooted in the absoluteness of his grace and mercy. 

One thing is for sure-when you do come out of the storm-you are not the same. If there is anything Michael’s life and death has made so much more real to me-it is the promise of eternity with my Lord and Savior like never before.

As we enter into this New Year, along with all the hopes and dreams I have for Malachi as he progresses and develops new skills-I challenge myself to be more heaven minded. To make it a point to align my thoughts with the thoughts of Christ—to see beyond what seems so real in this life into the joyful reality of the next. And you are welcome to challenge yourself as well. 

I was reading a devotional that was titled “Let Heaven fill your Thoughts.” The author talks about letting faith guide us, and living heaven minded.
Nancy Guthrie says it best when she states 

“To set your sights on heaven is to choose to anchor your thoughts and your heart’s desires beyond the ordinary things of Earth. It is to choose to value what is valued in heaven, to be concerned with the concerns of heaven, and to enjoy what is delighted in heaven. No longer will earthbound concerns or values dominate your perspective and priorities.”

God’s word demonstrates the importance of being heaven minded in Colossians 3:1-2 

“Since you have been raised to new life with Christ, set your sights on the realities of heaven, where Christ sits at God’s right hand in the place of honor and power. Let heaven fill your thoughts. Do not think only about things down here on Earth.”

It is so easy to let the daily demands of this life here on Earth distract you from the destiny that Christ has placed over you. You were called to do so much more than raise your family, have a successful work life, retire, and eventually belong to the grave. We must choose to live with a longing for our true home-with Him.  

The ambitions and goals I have set forth this New Year seem daunting-and yet if I ultimately choose to live with a longing for heaven-and aligning my thoughts with his thoughts, I can’t be discouraged. God has overcome the world, and nothing I face in 2017 will change the fact that He is on the throne and cares about Malachi. He cares so deeply about us all. 

Be encouraged this New Year-you are sons and daughters of the most high!  You are blessed and highly favored! 

​

You didn’t cry when you left my womb. Not a sound. Your color was blue. Your veins as thin as hair, your eyes stilled fused. But to break up the silence you came out, arms swinging with all you had. An arm swing that screamed “I’m worth saving,” “I’m here to fight…”

And so we gave you and your brother a chance at life. Knowing that all the numbers were against you. 

20% chance. And after the diagnosis of your grade four intraventricular hemorrhage, that chance of survival drastically decreased. 

             
I remember my dad coming to see me in the NICU, tears in his eyes as we had received the devastating news. Malachi was developing hydrocephalus. We were told he probably wouldn’t survive. And if he did survive the likelihood of him having debilitating disabilities was profound. Yet, we continued to fight for him. HE continued to fight. 

God gave him the strength to keep pushing onward. He could do it, despite what everyone thought he was capable of. 

While I was clinging to my dad that night without the strength to stand, he held me. Standing right there by Malachi’s bedside. I lost it. My tears stained my dad’s white work shirt as I cried out “I can’t lose him” “I just can’t lose my baby.” 

 I’ll never forget that moment in time. That moment when the true reality of a life without my son hit me in the gut. The news was too much to take in. My heart couldn’t grasp it. 

Jesus Christ began working something new inside of Malachi that night. Giving him the strength to make it one more day. Just one more surgery, just one more lab stick, procedure, vent change… 

He heard my cry. 

 Even when I was crushed to the point of thinking life wasn’t worth living. Even after the loss of his twin brother Michael, we were given just enough strength to keep our heads above the rising water.  

The fight that Malachi had in him gave me the courage to hang on. To find hope, and cling to it with everything I had. 

And here we are now…

Watching you splash in the water, smile, and babble… 

Some worries are still there. Questions still remain, yet we are not haunted by the unknowns. We see your progress. We see the amazing boy you are developing into, and feel so incredibly blessed to have this front row seat at the miracle working power of our Lord and Savior.  

No, not every day is peaches and roses. Life is busy, some days are down right hard. Your medication schedule is demanding, and your therapy sessions and frequent appointments have a way of throwing you out of your routine. The hour and a half drives to and from feeding therapy, feeding you through your G-tube when we are on the go…the hours I spend daily trying to get enough calories in you so you will thrive and grow. It can be exhausting. But it is worth it. So worth it to see you blossom.  

And blossoming you are for sure!  

I never get tired of the doctors talking about how “amazing” you are. They can’t get over you and all your new tricks!  

You are 14 months corrected, 18 months actual, and you are so full of love and zest for life!

 You are 21 lbs of squeezable sweetness. You have a mouth full of teeth, and can’t seem to catch a break from those pesky ear infections. In fact we have an appointment this week at Duke to discuss placing ear tubes. This will be your first surgery that is not somehow related to you being a preemie! Just a normal, toddler surgery (although we wish you didn’t have to have it!). It’s not brain surgery for sure!  

You are so full of joy, and this age is oh so fun (and exhausting). Every day is a new adventure for sure! Everything is so new to you. I enjoy watching you discover the freshness all around.

 Being outside is your absolute favorite, no matter how blistering hot it is. From the birds, to the tractors coming by on our old country roads, to the cows across the street making all those crazy noises-this world is your playground and you love everything in it.  

You love to walk around outside, and kick and throw your big yellow ball. In fact, you are getting pretty good at this whole walking thing. Up and down you go all day, finding your balance, and then taking off! I can’t turn my back for a second without you getting into something!

You are also the ultimate giggle monster. Your laugh is contagious! And your big blue eyes and dimples make saying “no” to you awfully hard.  

Although you will let just about anyone hold you, you are pretty quiet when we are out and about. But BOY do you let loose at home. You have become quite vocal making lots of noises like “babababa,” “papapa” and other gibberish. We love to hear your voice! Especially after you barely made a peep for so many months! “Dada” and most recently, “mama” are your favorite words. You sure do have this mama wrapped around your finger! 

You might not be the best at eating, but you are oh so smart! Your recent developmental testing showed you are right on track for your adjusted age (which at the time was 12 months). Even since then we have seen you make huge strides. You amaze us every day Malachi! Your receptive language skills (words Malachi understands) at the time that we had you tested were that of a 15 month child, which was amazing to hear!  

You do have a few quirks! Like how you are obsessed with ceiling fans, and think they are the coolest invention on the planet! And how you twist and turn your tongue when you are concentrating really hard. You also love your big red tunnel. No matter where we hide it in the house, you can always always find it! 

You enjoy reading books, but there is no doubt that trucks and cars are your favorite toys. You could move them all about on the floor and make their noises for hours.

You light up every second of every day! 

I recently read something that said having a child is like watching your heart walk outside of your body. What a true statement that is. I find myself staring at Malachi, just waiting for my heart to explode. 

How did I ever live this life without you Malachi!? You are my greatest joy. You have overcome so much, endured so much pain-yet remain vibrant and so full of life.  

I’m so proud of you Malachi.

I remember walking down those NICU hallways finding every nurse that had taken care of him, “Malachi is on cpap, no more ventilator!” “Can you believe it!?” “He is so determined!” “He is so strong!” I was so proud of my boy that day. Terrified. But, oh so proud. Jake was smiling and almost laughing when we left for the night. 

“What are you laughing at,” I asked. “There is no doubt that you are Malachi’s biggest fan,” he replied. “For his entire life, I know you will be his biggest supporter.” 

He was right. Through each twist and turn, up every mountain-one thing remained constant. I believed in him. I wanted everyone to know the strides he was making. I couldn’t help it. It would burst out of me like boiling water spewing over. “Can you believe Malachi is doing THIS…” 

It still does…

We do not take a single day for granted. 

The loss of Michael is a constant reminder of how things could have been. 

And through the sleepless nights, the yearning for my baby, the constant ache that laid heavy on my body, the numbness, and then the intense grief that followed-we had Malachi. And somehow that kept us going. The FIGHT in Malachi, gave me the strength to push onward. 

18 months later, and here we are. Still empty. Still grieving. But living. Living each day the best we know how. We have so much to live for. So much to be thankful for…

If you are still reading, I want to thank you. Thank you for listening to the details that makes Malachi the special boy that he is. 

I get a lot of questions regarding Malachi’s eating, and feeding tube. I will write an entire post one day where I answer some of the most frequent questions I receive, but for right now, I just ask that you pray for Malachi. Pray for his oral motor development, chewing, reflux, swallowing, and complete healing of his GI tract. 

Feeding issues are frustrating beyond belief. I do believe that Malachi will be tube free one day, but it is a long process. And some days are very emotionally draining for Malachi, and myself. Not only does his oral motor development effect his eating, but it also delays his speech. Although Malachi has made great strides in his expressive language, we still need continued prayers over this developmental area in his life.

Furthermore, Malachi will be having two surgical procedures in the near future. Nothing too serious, but still surgery nonetheless. More details to come. 

Finally, we pray for continued growth in Malachi’s fine motor, cognition, and muscle tone. 

Your prayers mean the world to us. 

There are so many more things I could say about this season of our lives, but I will leave you with this…

The greatest trials in our life thus far, have also given birth to some of our biggest blessings. It doesn’t mean that we don’t ache, because we do… But we have found purpose and healing through our pain. 

There was a time when I didn’t think I would survive. When the circumstances of life seemed too big. Too heavy. I felt abandoned by God.  Maybe you have been there. 

But God’s word is true, and we can hold onto the truth that he cares about the details of our lives.  

 His plans are not solely to bring us happiness, although happiness is often present-great pain is too sometimes necessary. And while we are almost certain trials and suffering will be a part of this life, we can hold onto the one who will bring us through it. We can hold onto the one who gave his life so we could have life. We can hold on to the hope of eternity.

He will never leave you nor forsake you. He WILL give you more than you can handle, but if we trust him, he will hold our hand through it all. God will abide with you even in your darkest hour.  I can attest to this. He continues to heal my heart, piece by piece. 

Malachi has taught me to keep fighting.

I watch him hold my hand, and then let go. He can do it on his own now, somehow. I always prayed that Malachi would live a life of independence.  And now I see him slowly lessening the grip of my hand. 

It’s exciting, and terrifying. But he can do it.  

He has always been the boy that could do it.