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.