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! 

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