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February 15, 2020 in Down syndrome, Family - 2 Comments

Almost every day I forget that Easton has Down syndrome. It isn’t at the forefront of every day like it used to be. I used to think about it all the time. When I was pregnant, it was all I could think about. It took me a while, but over time, it just doesn’t seem like that big of a deal anymore.
The only time it comes to mind now is if I’m having to do something like fill out paperwork, trying to get therapy services, etc. Today for example, I went to apply, and have Easton screened for the Developmental Delay Waiver waitlist. The woman that did it was very kind. She was really sweet with Easton. I really enjoyed chatting with her. 

While she asked all the questions she was required to for the screening, my heart started hurting. It was that familiar hurt. That hurt of the past. The hurt I felt when I was grieving the future I had for my unborn child. It surprised me, because it was still there. I thought I had gotten rid of it for good.
Forty-ish minutes went by and then we were done. Easton met all the requirements, so she was able to put our name on the list. While this is exactly what I wanted. It’s the outcome I went there for, I found myself crying on the way home.

I am happy that he was able to get on the waiver. Hopefully he will be able to use it one day. But it also made me really sad. The grief that I thought I had put behind me came fiercely flooding back. I guess the feelings I thought I had put to bed are still living in a small section of my heart, and small things like today will make them explode again.
Why was I sad? I had gotten what I wanted. I went there with a mission in mind, and I accomplished it. So what was I crying about it? The answer is because today was a HUGE reminder of the realization that the future I had planned in my head for my child won’t necessarily come to fruition.

When I was pregnant (early on) with Easton, I spent my time dreaming of what he would look like, what he would be like, and what he would accomplish in life. Then life threw me a curve ball, and I had to grieve those visions of the future.
Now, to be clear, I am not saying that Easton won’t accomplish things in his life. He most certainly will. Look at all that he has done already. He has already surpassed all the things the woman told me he would do when she told me of his diagnosis. His future is just slightly different than I had envisioned. His future is still bright. It is full of love, joy, and fun. I have no doubt that he will hold a job and be a contributing member of our society. I think he will be able to live independently, although I definitely wouldn’t hate it if he stayed with me.

Today I learned that even though I love Easton with EVERY piece of my being, sometimes I still have a tough time with his diagnosis. Ya know what…that is okay. I am doing the very best I can, and I will continue to do my best for Easton. But I also have to be gentle with myself when these feelings hit. I am only human after all. I’m still learning and growing every day as Easton’s mom. I pray that I continue to get better at this wonderful job I’ve been given. 

Thanks for reading! 

​xoxo, Krista


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  • Jamie February 16, 2020 at 11:31 pm

    The grief, I don’t think, ever goes away. That sadness for what we wanted, and for what the future may entail, is a lot like grieving a death. It doesn’t go away, but it fades into the background as time goes on and as we all settle into and accept our different realities. Our littles will always face challenges, judgement and have to fight a little harder just to be here. That is where I think the grief lies.

    • raisingtherobbins February 17, 2020 at 1:57 am

      I couldn’t agree with you more. It is definitely still there. I think I just forget about it in the day to day because this is my new reality. But, as you said, its those moments when they struggle that it comes back. Recently, it’s been when Easton struggles with speech. That’s when the grief comes back.

    Leave a Reply

    Hey! I’m Krista!

    Hey! I’m Krista!

    I live in Chesterfield, VA with my husband Drew, and our two boys, Easton and Asher. Easton was born with Down syndrome. Easton's prenatal diagnosis was one that I struggled with greatly at first. Once he was born, I realized that everything doctors told me about all the things he wouldn't be able to do weren't true, and I became empowered. I felt the call and need to share our story with others in hopes that other women walking in our shoes could see that life with Down syndrome is not scary. It is filled with wonder, excitement, and joy. Follow along as I share all about motherhood, Down syndrome, our home, and lifestyle.

    xoxo, Krista

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