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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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