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.