It is official…our little miracle Malachi is four years old! 

We wanted to take Malachi on a birthday adventure so we stared with lunch at O’Charleys. He loves the taste of their potato soup, so we got the birthday boy a bowl of his own! Then we headed to my brother’s house for cake and presents with the cousins. Malachi has three cousins that all share a birthday week with him, so we cram as many names as we can on a cake and sing an extra long “happy birthday” song for the crew.

The birthday adventure continued with a trip to the bowling alley.

Malachi really enjoyed his special day this year and seemed to understand that there was something unique going on. He is such a big boy these days, and seeing him start to understand things is such a breath of fresh air.

I handled the actual birthday oddly well, but did have a mini-break down the day before. I very rarely allow myself to think back to those dark days but made an exception this week. I thought about all the emotions from that day- feelings I can’t even put into words. A mixture of grief in its most severe form and sheer helplessness. The desire to see my son, but the fear of the unknown crippling me. It really does feel like a horribly bad dream.

Malachi and I spent a lot of time cuddling this week as mommy shed silent tears. Some of the tears had a bit of heartbreak in them as I watch him struggle so much, but most of the tears were riddled with joy that I have had the chance to know this sweet little boy. He must have sensed my swinging emotions and was extra cuddly this week, relishing all the big hugs and kisses I couldn’t seem to stop giving him.

Every birthday I try to write something out to help me process my feelings, so I will share with you this years entry:

It was 4 minutes past midnight when 1 pound, 12 ounce Malachi was born. I would love to be able to describe my emotions and paint a beautiful picture for you, but our story began differently. I missed my own son’s birth. I am told it was anything but calm and quiet in that cold room as they fought to bring a dead Malachi back to life and fought to keep a living Leah from dying.

Today is Malachi’s 4th birthday. Most mornings he ends up in the bed with me as I try to get his little brain to relax enough to fall asleep again. His body and brain need the break, but his brain waves just don’t allow it. This morning it was clear I was fighting a losing battle as he giggled and continued to find my face with his warm toddler hand. I whispered “I love you” to him and watched him process the words and muster up enough strength to repeat “I”. I guided him to say the next word, and after thirty seconds of trying he whispered a sweet “love”. This morning I never got that final word. I prompted him to say “you” but the strain proved too much for his little brain and he went into yet another seizure. There is nothing natural about a seizure, and even though I have witnessed thousands it still makes me queasy to see his body do such unnatural things. And the only thing I can do is climb into the storm with him and assure him he is okay and safe until it passes.

4 years ago I woke up from what seemed like a horrible nightmare and looked into my husband’s face, verifying that those dreams were in fact reality. My first words as a mother were: “Is he alive?” and Jake could only nod slowly with his head, forcing a smile but his eyes telling me more. Details were kept from me, but the next day there just happened to be a moment when Jake stepped out of the room and a nurse came in. Seeing the opportunity, I asked her “How is my son?”. She shook her head and said “It doesn’t look good” and then shuffled out of the room. My first day as a mother was spent preparing my heart for losing my son…someone I so severely loved but thought I would never get the chance to meet on this side of heaven.

But he lived. And boy, does he live.

This may sound odd to you, but in our family we mentally have a difficult time celebrating the day Malachi was born. Instead we find ourselves quietly celebrating the milestones. Celebrating 3 days old when I was able to meet him for the first time. I couldn’t touch him, but I could look at him, and that was monumental. We celebrate 3 weeks old when we were finally permitted to hold him. It took three nurses and a member of the respiratory team to monitor the ventilator gear, but what a special day it was. We celebrate that special day we carried him out of the hospital for the first time, a 6 pound 4 month old.

The truth is, we find ourselves celebrating every day we have with our Malachi. As I type this I am listening to my little four year old giggle at the roaring dinosaur on Bubble Guppies and I can’t help but realize how blessed I am. This year he has learned how to hug by squeezing his little forearms around me as tight as he can. It may not look like a hug to you, but I know his sweet gentle heart and recognize the effort he is putting in just to make that coordinated motion happen. He gives kisses more freely than anyone one earth. He is a Christ-like example of unconditional love, and while he can hold a grudge, his heart won’t allow it to last for more than a few minutes. He forgives my faults…daily. My anger when his body doesn’t cooperate, or when the seizures don’t stop coming. He is patient, kind, keeps no record of wrong; he always trusts, always hopes, and always perseveres. He is a wonderful example of love.

Philippians 4:8 tells us: “Finally, brethren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything is worthy of praise, dwell on these things.”

Each and every day I have to make the conscious decision to dwell on things worthy of praise. The temptation is great to focus on the challenges of our life. To focus on the fact that Malachi may never walk. That he may always be in diapers. That the surgeries and medical issues will never stop. And my mind is naturally drawn to these thoughts on a daily basis. But we are called to focus on praiseworthy things, so for each negative thought we must find a positive. We must choose to dwell on things worthy of praise.

Malachi lived- despite the odds against him. And what a silly four year old he is. I believe that God created Malachi just the way he is, not just for me but for others. Through him we get to see a glimpse of the character of Christ. And through his story we see the hand of God in ALL situations, both the good and the bad. There isn’t a day that goes by that Jake and I can’t feel the presence of God over our family. We are blessed more than we deserve.

So today we say Happy 4th Birthday, Malachi! But I hope you know that each and every day you are celebrated for the unique blessing that you are.

Now time for some other weekly updates. Malachi has had a hard week in regards to seizure control. In December Jake and I decided to change Malachi’s diet a bit and try to get him on a less sugary drink. We made the change to almond milk and loved the changes we saw in his intestinal comfort. He has more of an appetite and consumes much more food than before, even taking “bite-bites” by mouth. He stopped throwing up and his seizures that were sparked by gut issues seemed to slow down dramatically.

We have noticed over the last few weeks that Malachi has been losing a significant amount of weight. We want to be cautious to not fall too far from the growth charts, since he technically still has a failure to thrive diagnosis. This week I decided to try to re-introduce one nutritional soy shake a day but the same day I introduced it he stayed awake most of the night with trapped gas. We gave it one more day and again the nighttime issues happened and we saw an increase in seizures. We stopped the soy shake, but his seizure activity hasn’t normalized quite yet.

Our lives have picked up dramatically as Jake and I have simultaneously taken on two short term things: the indoor soccer program we run at our church and starting a high school boys soccer team at the high school. Between both of these programs we are also still youth directors at the church, leading Bible studies Sundays and Mondays in addition to planning events for the kids. Our weeks are now jam packed when you add in Malachi’s appointments.

Often times people question why we take on so many things, and for us it comes down to a personal calling to invest in as many lives as possible while we are here on this earth. God did not place us here to be selfish with our time and energy, but instead we should live a life that focuses on building relationships and reaching out to others. Even in situations where we can directly talk about God (like the high school coaching) we can be an example of someone different…someone who is reflecting the light of something powerful.

Yes, life is crazy. But God always seems to give us the energy to get through.

In unrelated news, we broke ground on the property this week! This is such a big step in the right direction, and Jake and I have been driving by there daily to gawk at the progress. 

For Malachi’s birthday, we decided to purchase some much needed items for him. One such need was “big boy” bibs to catch his drool. He has been soaking through his shirts within an hour of putting them on so we needed to find some solution. After talking with some other special needs moms we settled on a brand called Sweedie Kids and I am in love! We didn’t want something that looked like a baby bib, as we already constantly have to fight the battle of people seeing him as a little baby. These seem to be the perfect solution!

We also purchased Malachi something big, but I think I will wait until next week to share that one with you. It is currently on its way from Ohio and we will go to pick it up next week. It has a pretty awesome back-story that I can’t wait to share with you.

So all-in-all, another great week! Malachi has stayed healthy despite some rampant sickness hitting our area. Hopefully our sickness free streak will continue well into the spring. Thank you for taking the time to check in on our little four-year-old. What an awesome little man he is!

God bless,

Jake, Leah, and Malachi