Skip to main content

Letter to another family with a child writing their own book

To another family with a child writing their own book,

Kaleb is now either 16 months old or 14 months depending on how you look at it. Sixteen and a half months ago he entered the world 12 weeks early weighing 2 lb 2 oz. He is also considered 14 months old as of today since 14 months ago would have been his due date. For a parent of a preemie it can be confusing explaining the actual and adjusted age of a child. It can also be difficult as a parent to wait for milestones to happen that many parents take for granted.

Some days I do better at this than others. Yes, I knew from the time he was born a very small preemie that it would change things from the typical baby development timeline. Again I realized this when I learned of brain bleeds, Down syndrome, heart defect, and his other medical issues. It is a lot for a heart to take; wondering at their life, their potential. Wondering what milestones will they reach?

In some ways it gets easier and it some ways harder as they grow. It gets easier because you get to know and bond with your child. Even though it doesn’t seem like it in the beginning, you will bond with your child and their medical file will begin to separate from them; from their personality and heart. While you will love your child with every fiber in your being, it gets harder because while you know their development will differ from their peers. It is still a lot for a momma heart to take as you see it happen. For myself, it can be the toughest when I see other medically complex children reaching milestones that I am still waiting for Kaleb to reach.

However, those days… Those days when they do something. Either for the first time or you watch them do something and it triggers something inside of you as you suddenly remember those days, weeks, or months that you worried, stressed, prayed, and cried for them to reach a milestone. It is a joy that is indescribable. It is a feeling typically parents won’t experience like we do. Kaleb is pretty delayed in gross motor skills. Yes, that is even tough to say.  He does better with fine motor skills, socializing, and even communication he is not too so far behind. However, gross motors skills he struggles. Thank you prematurity, sickness, Down syndrome, and open heart surgery for that. He has trouble sitting, he can sit and has been able to for a while but does not like to. It’s been a fight and battle for a long time. He has rocked on all fours for a couple of months but doesn’t crawl. He isn’t ready to stand quite yet, let alone assisted walking.

Then today, today I got an email. It was a picture from his daycare. It was a picture of him sitting. That’s it. Him sitting and smiling. From his position and knowing him, he was probably wanting to get at the phone or tablet that it was taken on. That kid loves getting a hold of phones, computers, tablets, remotes, or anything or everything we tell him not to.  I knew he had been doing better and was sitting more at daycare. Still, something about that picture triggered the memories; the frustrations, worry, and stress. That picture, brought tears to my eyes. He is doing it, he is sitting.  I have watched at least two groups of kiddos go through his class and bypass him as they continue on to the next class. I watch the differences in ages get further and further apart. Today, it doesn’t matter. Because today, I got a picture of him sitting and smiling.

Right after that email came a text. A text from my mother to let me know that you and your family are about to welcome your baby into the world today. A baby who has already made you lose sleep while you worry, cry, and pray. A baby who will not be a very premature baby or come with a diagnosis of Down syndrome but will have a medical file of her own. They don’t think she will be able to walk, and have been worried about several other issues related to her diagnosis.

It will be hard to be a parent of a medically complex child. Then again, parenting any child is hard. Some days might feel unbearable. However, there will be days that something happens and you will look at her and cry. But, it will be tears of joy, while you marvel at her strength and yours.

I don’t know what her future will be. I don’t know what your NICU journey will be. We had 14 weeks in the NICU, but your journey will be unique to you and your baby. Each person’s is. However, I do want to say congratulations on your new miracle. I do know, if you let her, she will teach you more about this world and yourself than you ever thought possible. You will fall deeply in love with her. You will marvel as she grows, as she goes through labs, and endures tests and procedures in the NICU. You will feel this insane amount of joy as she graduates from the NICU. Celebrate each and every milestone no matter how small. One day you will look back on it and be amazed and you will wonder how she and you did it. You’ve got this.

Here’s to parenting one day at a time and the many adventures in store for both of us.

I can do this. You can do this.

Sincerely,

Another parent of a child writing their own book. 

Comments

Post a Comment

Popular posts from this blog

My letter to Alex Gordon

Alex, I wanted to share a few pictures with you that show why I'm writing to thank you. You see my three year old, Kaden, knows more about baseball and the Royals than many adults I know. He loves as he would put it "all of the Royals" but without a doubt, without any hesitation when asked who is his favorite player is his answer is always one player; you.  I'm not kidding when I say Gordo was one of his first words. In fact anything baseball for the longest time was called Gordo. I'm not exactly sure why he took such a liking to you. I joke it's because his first ever game at the K and you hit a grand slam when he was not even a year old. For what ever reason he adores you. He even has a little Gordo plush doll that he likes to take everywhere.  This past year has been the toughest year for our family. Our second son, Kaleb, was born 12 weeks early at 2lb 2oz. We also learned of his diagnosis of Down syndrome two days after his birth. He spent

Let Go and Let God: A story of a monkey and a banana, a Casting Crowns song, and my own stubbornness

This post is about a monkey and a banana, a Casting Crowns song, and my stubbornness. Those may sound like completely random things but all play a part in my learning to “let go and let God.”  We all have flaws after all we are human. Two of my biggest flaws are my stubbornness and my need for control. I like to do things my way, after all I tend to think it’s the best way so why wouldn’t I want to do it my way? See, controlling and stubborn. So you can imagine when I have a certain plan for my life I don’t easily let it go. So it’s safe to assume I didn’t like or appreciate being thrown some curveballs this past August and September. They didn’t fit into my plan for my life. I found God trying to show me the same lesson I have yet to learn; once again he was showing me that I am not in control and once again I argued back. Which brings me to the first part of my story.  This was not the first time God and I had words on the subject. This has been a long term lesson and one I have

At Papa's Feet

Today the world lost a great man. Often times that statement is said whenever someone loses a loved one. Today is my turn to say it as today is the day I lost my grandpa or the man I named Papa. What makes someone a great man? I could talk about his experience in the military, the hardworking man he was on his farm, the husband of sixty-four years to my grandma, long time deacon of the church, or father to my mother and uncle. I won’t speak to those things. I know of them, some more than others, but my experience my relationship comes from that of a granddaughter speaking of her grandfather. You have all heard the expression of “your happy place.” “Go to your happy place, visualize your happy place.” This is used in order to calm you, to bring you back from stress, anxiety, frustration, anger, or various other emotions. My “happy place” has always consisted on one place; my Nanny and Papa’s house. I believe there are many reasons for this. Perhaps it might be Nanny’s meals, especi