Thursday, January 26, 2017

Welcome to Village Rockin Mom

They say it takes a village to raise kids. When trying for and planning for kids I never imagined my village would include so many medical professionals. I also could not have pictured a group of women, most of which I have never met, who I would feel so connected with and who would play such a big part in my support system. This group of women who call themselves Rockin Moms.

One day while sitting in the NICU I posted in a Facebook preemie group about how lonely the NICU journey could be and doubly for a parent with not only a very premature baby, but with a baby who also happens to have Down syndrome. I was about to receive my first lesson on just how not lonely it was. A mother told me about the organization called DSDN (Down Syndrome Diagnosis Network) who has these Facebook groups. The full name of the group is Mothers of a child Rockin an extra chromosome. Groups and group members commonly referred to as Rockin Moms. By the end of the day I was a part of a community of moms that would walk this journey with me. 


We all walk the same journey but have different paths: Some of us celebrate milestones earlier in the developmental timeline, more closely resembling the timeline of a typically developing child. Some of us wait a longer time for their child's milestone celebrations. Some of us know what it's like to hand our baby for heart surgery where they will become a member of the zipper club. Some blow us away with their child's sign language and communication skills. Our kids are as varied and unique as the moms who make up these groups. We are all different but we all have one thing uniquely in common; we have fallen in love with an extra chromosome. 


DSDN, it is an organization that I believe in and that I believe in so much that I celebrate when I get the opportunity to refer others parents to the amazing support groups. Some of us laugh about how excited we get when we meet a parent and we get to let them in on the secret about DSDN. With every parent that I direct to DSDN I let them know; your family is about to get much bigger. I have gone from the feeling of loneliness to my fellow Rockin families filling up my Facebook feed. 


The 21st chromosome may be the smallest chromosome in the human body but it is my experience that it can also create the biggest bonds. It does take a village and I'm thankful for each Rockin Mom that is a part of mine.


I urge you to please consider donating to DSDN as they work to welcome new parents into our Rockin community. As I tell new parents; DSDN was a game changer for me. Help them continue to make a difference in the lives of new families. I have set up a fundraiser to raise $1,500 for DSDN. I'll be honest, I'm an overachiever, I would love to see it go well past this number. Heck, I would love to see $2,500 raised. Click on the link and help me reach my goal. Even if you have 
$5 to donate thank you for helping me support an organization that has made all the difference in the world to me. https://dsdn.networkforgood.com/projects/24043-amanda-dickinson-s-fundraiser  

Please like or share as it help keep the post active. 

Wednesday, January 18, 2017

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.