Skip to main content

A Letter To My Kiddo With Disabilities

Hey Kiddo, 

When your dad and I first found out you were going to be part of our family; I couldn’t stop myself from dreaming and having goals for you. I was excited to watch you play soccer and be in the band. I was excited for you to love reading just as much as me. I even thought about what your long term future would hold and if you would get married and have your own kids. 
The day of your birth was one of the happiest but also the scariest day of my life. We almost lost you. But thanks to an awesome, loving, gracious God and your amazing doctor, you were able to stay here on Earth with us. You survived our nightmare. You were not given very good outcomes in the NICU but that has never stopped you from progressing and flying past the expectations they put on you. 
My dreams for you changed, that day in the NICU when they told us you have HIE and likely will develop CP and a list of other diagnoses and to never expect you to lead a “normal” life. Instead of dreaming of you playing soccer, being in the band, getting good grades and having a family of your own one day; I dreamed of you surviving. I dreamed of you breathing on your own. I dreamed of you being able to interact with us, communicate with us, and maybe someday even walk. 
I would be lying if I said I did not still grieve some of those old dreams. Sometimes it’s really hard watching kiddos younger than you walk. Sometimes it’s really hard going out to eat with other families and watching their kiddos eat what their parents eat. Sometimes, it’s just hard to be around other kiddos. I firmly believe though that us pushing past that grief and pushing past the fears is partly why you are doing everything you are. You’ve watched other kiddos and have mimicked what they do. 
Just as I would be lying if I said I didn’t grieve, I would be lying if I said I wasn’t proud. By golly kiddo, I am so proud of you. It’s such an honor to be your mom and watch you change and grow each day. It’s such an honor to watch you interact with others. You are the sweetest kiddo I know. You care for others so well. Your determination is something I inspire to have. Your strength and braveness is something I think we all strive for. 
In your short 21 months you’ve taught me how to love better. You’ve taught me that love that makes us push past any fear. You’ve taught me that going at your own pace is completely okay, and many times, needed. You’ve taught me how to step back and look at the big picture. In your short 21 months, you’ve taught me how to be a better person.  
    Dream big little one. You are going places. Do not let anyone tell you that you cannot do something. I strongly believe you will find a way to do whatever it is you want to do. 

I love you. 
Mom 

Comments

  1. Sam, this is beautiful. Thank you for sharing it, especially when sharing it feels hard.

    ReplyDelete

Post a Comment

Popular posts from this blog

NICU

The NICU. This is one post I wish I didn't have to write. And I suppose I do not really have to, but it is such an important piece to this story, that it felt wrong to leave it out. We spent 19 days in the NICU. 19 days. Those were the longest 19 days of my life. We arrived there just hours after Bren was born. He was started on a cooling treatment. This treatment cooled Bren's body down but the true intent was to stop any secondary brain damage from happening. Cooling treatment lasts for 72 hours. Bren was scheduled to end this treatment and start warming on Saturday morning. Bren had a rough time warming up and did not actually complete the treatment until Sunday afternoon. 4.5 days. That's how long the treatment took. That's how long it took for me to be able to hold my baby boy. You see, I wasn't allowed to hold him when he was cooling because holding him would allow his body to warm up too much. That was hard. Really hard. I couldn't hold and comfort my b...

Dear Mama

I recently read a blog post where a woman wrote a letter addressed to herself before her daughter was diagnosed with CP. I learned a lot from that letter and you can read it here. One of the things that really stuck out to me was when she said "Her progress doesn’t solely rely on you; she will go at her own pace. Follow her lead and be strong for her". I cannot tell you how many times a day I see Bren's lack of progress as a failure on my part. Because here's the thing; I am with him almost 24/7. I am taking him to this therapy and that therapy, this doctor's appointment and that one. It's easy for others to tell me that it's not my fault and Bren will do what he can when he can and it's so true. He will and just because he doesn't do something we have been working all day on, does not mean that I failed. I love letters. I love getting things that are thought out and filled with so much love. Words of affirmation are my thing. I love to give th...