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My Blue-Eyed Boy

Oceans by Hillsong United starts out "you call me out upon the waters. The great unknown where feet may fail." You cannot predict where your life will take you or what obstacles you will face here on Earth, but one thing I know for sure is Beckett is the greatest unknown that will touch our lives.

I don't know if this blog will ever serve a purpose other than to keep people updated on what's going on with Beckett, but I wanted to have a piece dedicated to him and all the things I wish he could know.


Beckett,

I'm sorry. I'm sorry I got sick when you were in my tummy. I'm sorry CMV has taken so much from you already. I was supposed to be keeping you safe, but I was hurting you. When the doctor first told us you had Lissencephaly, my heart sank to the floor and I immediately thought of all the things you couldn't do in your lifetime. I have read articles by top neurologists from Texas Children's and they describe a Lissencephaly diagnosis as "tragic", but I refuse to see it that way. Don't get me wrong, this is a very challenging time for your daddy and I, but you and your brother need me as a positive influence. For that, like my dad reminds me, we must celebrate the things you can do.

I am not a victim of your diagnosis. I am your mom. I will be your support when you struggle, your voice when you need an advocate, a hug when you've had enough, a rock when you need strength, a comfort when you are unsure, patience when you are learning, and your caretaker as we navigate different medications.

Raising a special needs child does not make me special, it makes me a proud mom. Proud to be your mom.

I have said many times that you are the calm to our storm. From the moment you were born, you have brought such a calming, peaceful presence. If the perfect baby exists, it is you. I know you will teach us so many things in the time we have you.

Before having you, I always imagined we would have a "normal" life. Our normal will just look different than what most people might think of as normal, but that is perfect for us. You have already taught me how to have empathy toward parents of special needs children, as we know first hand the emotional turmoil they may be experiencing. 

Your daddy and I are going to take you to as many state parks as we can, let you experience all the seasons, and explore all your surroundings in our current home and any future homes we share!

Lincoln is so lucky to be your big brother. You will show him how easy it is to be truly accepting of others, and not make any one feel like they are different even if they do not look like what society says is "normal".

My blue eyed boy, your future is our greatest unknown, but one thing that's certain: I will always be your mommy 💙








Comments

  1. DavidApril 19, 2022 at 5:15 AM

    I admire your love and strength and am eager to share it his journey with you.

    Pops

    ReplyDelete
  2. Rogan Family April 19, 2022 at 12:43 PM

    This so beautifully said! You are the perfect mama for the perfect boy ❤️ - Erin

    ReplyDelete

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