It’s those glazed sleepy eyes that I see when the sun comes up. It’s the way you turn your head sideways to get a better look at things. It’s your quirks, your personality-that is both timid and gentle, yet total goof ball-all at the same time. I love all the little things about you-the ins and outs-that make you unique.

 

I love the way you gently whimper when you’re trying to fight sleep. I love the way your entire demeanor changes to a solemn tone of satisfaction when we take a walk outside. The way that you could swing on the front porch for hours, listening to the wind chime cling and clamor. The way you stare at books with such intent as you try to decipher each picture. The way you laugh with your entire body and splash your chubby legs during bath time…

From your pudgy little toes, to your fuzzy blonde hair that sometimes sticks straight up-I love every piece of you.

In fact, I wish I could take all the small things that make our lives so radiant-and somehow bottle it up.

I live for days filled with simplicity…without appointments, procedures, and checkups. When we can just lay on the floor-blaring Christmas music, or dance around in the kitchen.

I crave these moments…these little blimps of our life that fill my heart to the upmost with gladness and delight.

And to think…there was a time when I didn’t know if I could have you. A time when a future with you seemed dark and distant. When the thought of having you safe in my arms at home was just a blurry fantasy in my sweetest dreams-and a reality I thought I would never partake…

But here you are. And your future is looking brighter than I could have ever imagined.

Sure-we may have to weather through a few storms, climb some mountains, and take on a few set-backs.

But I know you Malachi-and you are strong. The strongest little boy I know.

A little boy that is growing up into this beautiful person…full of LIFE, bliss, and an undeniable charm.

Many people have been asking me how Malachi is doing-and while I usually answer with a simple “he is fine” or “doing good,” which will usually suffice. I really want to tell you more. So much more. If I could sit down with you on a sunny afternoon and chat…I would probably tell you something like this…

Malachi is doing wonderful. Considering his past, his medical history-including a grade four brain bleed & PVL (dead brain tissue), and the bleak prognosis we were given over his life. Yes-he is doing amazing.

In fact, even though October has been busy with appointments and therapy sessions, it has also been intermixed with spontaneous trips to the park, and stops by the pumpkin patch.  We try to fill Malachi’s life with moments of absolute joy, by squeezing in tidbits of adventure no matter where we go.

Also, Malachi has also been gaining weight (17 ½ lbs) and meeting new milestones, such as passing toys between hands, sitting up unassisted, and eating more by mouth.

In fact, he loves to eat peaches, yogurt, and carrots (his favorites)-and he makes an absolute mess every time he does so…

Something about just letting me feed him is not sufficient. No-Malachi wants to hold the spoon, and touch the food-and then cover all his toys in a sticky mess.

But, we are trying to make eating enjoyable-so we just let him have at it and deal with the gummy residue later.

…And while I have seen so much progress in Malachi, I would be lying if I told you every day was easy.

You see, while meeting new milestones comes second nature to most children-Malachi has to work extremely hard to do seemingly “easy” tasks. Like rolling, and sitting. There have literally been HOURS worth of therapy to get him to the place he is now.

And eating. While he can sit down and spoon feed fruits and veggies-he has a very difficult time drinking due to low oral tone. Malachi will NOT take a bottle. Not even for a second. If he drinks anything by mouth it is from his cups that our feeding specialist has given to us. This is why Malachi’s G-tube has been such a blessing.

And while I was 100% opposed to getting it when the doctor first brought up the concept, I look back now and can’t imagine life without it.

Yes-it comes along with its own set of challenges, but it is also giving Malachi the nutrition he so desperately needs.

Sure-we get a few odd stares when we try to feed Malachi in public. But who cares what strangers think anyway? We have our routine down. A system that works for us. In fact, I love the snuggle time I can receive while feeding Malachi. It may be deemed “odd” or “different” to most-but it is “our normal.” It is helping Malachi grow and flourish both developmentally and cognitively, and for that, I am most grateful.

While the surgical procedure was intimidating, and it took a little bit of time post-op to get Malachi’s pain under control, I can honestly say Malachi handled it so well.

In fact, the main surgeon described Malachi as “feisty” and went on to say that if he had not taken the breathing tube out after the surgery, Malachi was seconds from ripping it out himself. I found this humorous considering that my biggest fear going into the surgery was the possibility of a difficult extubation process-and Malachi having to stay on the ventilator postop. But God equipped Malachi with exactly what he needed to get through the surgery, and to recover without complications.

Here are a few images from surgery day…

 

Malachi has also been busy working in physical therapy  with our focus being mainly on crawling-however, he does not seem very interested in this…

He would much rather try to pull up on mommy, and climb her like a monkey!  He has realized that if he pulls up hard enough, he can stand-and thus see the world in a whole new light. But-there is a saying that goes something like this “you do not learn to walk by walking,” and this proves to be true in Malachi’s case. Due to his high muscle tone in his lower extremities we have to limit standing time, and focus still on floor skills, such as transitioning to sitting unassisted, crawling, and rolling all around.

But Malachi is such a trooper, and I know that he is doing things on his own time table.  He always has…and that is fine.  I can only push Malachi so hard, and then I have to hand it over to God- our source of strength.

We also recently received Malachi’s twin brother’s headstone. What a bittersweet day. I was in such awe of the beauty of the headstone. It was perfect-exactly what I had imagined for my little boy. But my heart was so heavy in seeing it.

So heavy in having to live with this emptiness.

The memories of his loss.

The guilt.

The overwhelming grief that hits you at any given moment….

It seemed appropriate that the day when we went to Michael’s grave it was raining. It was as if the heaviness of my soul was crying and tears from heaven where flowing downward towards Earth. And as I bent down and placed my hand on the ground-I couldn’t help but weep for my son. The son that should be in my arms, and not buried beneath me.

But with intense grief, there also comes a new level of joy-one that can be felt with such depth. And as I watch Malachi grow up, I can’t help but feel a sense of joy that radiates through my entire being. The kind of joy that I know only comes from our father, Jesus Christ.

You see-if HE is your source of joy-then no one can rob you of that. The Joy that comes from the Lord is lasting. It is forever.

Throughout our day, we talk about Michael often. We show Malachi pictures of his brother, and while he does not understand right now, we want him to know that has a precious brother, one that forever impacted our lives. We want to speak his name. We want him to come up in conversation. We want him to somehow live in and through us.

My mom had a dream the other night that my grandmother, who passed away a few years ago, was holding my Michael and rocking him in her arms. I too had a dream of Michael the other day. It was the first time I could see his face, and he was about the age of Malachi in my dream. He was perfect. Whole. And while it doesn’t make the sting of losing him any less, I do not lose hope. For I know that he is in the very presence of our Lord and Savior.

Sometimes I wonder if twins by instinct know that they are one of two. Malachi has the type of personality that he wants someone nearby at all times. Even if we are playing with toys on the floor-he will periodically place a hand on my chest or my leg, just to make sure I am close. If I leave him, he will whimper-or lift his hands in the air for me to pick him up. And it’s not just me-he does this to my mom, or anyone that will play with him. He doesn’t like to be alone. And sometimes I wonder if that is the “twin” in him.

I was absolutely honored in October to speak at two events for pregnancy and infant awareness month.

Many different individuals gathered for these events- each with diverse upbringings, values, and pasts. Yet, we all shared one common bond. We all knew what it felt like to lose a child…the kind of grief that shakes you down to your soul, and rips you to the core. We all knew what it felt like to have a piece of our heart forever shattered. And while we gathered together-in brokenness-I shared the following words…

“I want you all to know that the life of your child mattered -no matter how brief. Whether your child was lost early on in a miscarriage, died before, during, or after child birth, or in the weeks or even months to come. No matter what the circumstances were-the life of your child was valuable. Their life deserves to be celebrated. And you deserve to be happy again. Your child would want that for you.
A young lady named Lexi that lost her son due to congenital heart disease at 6 months of age wrote the following statement: she says… “I’ve learned that the most radiant people aren’t the ones you see on billboards or whose name is in lights. It’s the quiet survivors who have been shattered beyond belief and have overcome. The ones who grit their teeth and carry on, day after day, clinging to hope, even if it’s by a single strand. “
I love her words. YOU are the quiet survivors. The ones that push onward, despite feeling crushed in spirit. No matter how weak you feel on the inside-you are an overcomer. And that in itself makes you strong.”.

We lit candles in their memory. We released balloons in the sky. And most importantly-we spoke of them. We remembered them.

That is the thing about losing a child. It changes you forever-and it should. Irrevocably. Intensely. For a lifetime-we are changed.

And in a blink of an eye, October was gone. The leaves were changing. And November was rushing in with its crisp winds and all the festivities that come with the upcoming holidays.

November was the start of prematurity awareness month. This month is important-because like a brewing storm or a raging fire-all of the struggles and medical issues Malachi faces are a direct result of his prematurity.

And with Thanksgiving finally arriving, we can’t help but think about how undeniably BLESSED we are to have Malachi in our life. We are blessed to have a loving family, a house over our head, and food to eat. And while we have faced great tragedy this past year-we reflect on how far God has brought us.

Through the valley of the shadow of death.

Through the raging storms.

God has remained faithful.

We are thankful this year for his resurrection power. For his unending love & grace. Just to think…the God of the universe LOVES US-and has called us his own-that is something we can cling to this holiday season.

We love you Malachi….

Absolutely every piece of you.

Everything.

And I love watching you grow… but at the same time, I wish I could just make this moment in time stand still. I want you to blossom, and do all the things little boys your age are doing and yet, just for a second-I wish time would stop.

That the universe would halt-and I could just take in all the simple things about you that make you so wonderful.

We delight in you Malachi, and the blessing you are. In fact, our lives would be incomplete without you in it.

 

 

Happy Thanksgiving everyone.

Rejoice in the simple things in your life that make it so splendid. For when years have passed and you are looking back at your life in retrospect-you will quickly see how the “small things” were indeed actually the more vast and meaningful things after all.