As Dylan's first birthday approaches, I am finding that there are many emotions and memories that are coming along with it.
When I awake in the middle of the night, I can't help but remember...
I remember, so clearly, the way that I felt when I was first told, 5 hours after Dylan was born, that he was "showing possible signs of Down syndrome". I remember the disbelief. The fear.
I remember coming back home from the hospital, about 14 hours after we had left, on June 28th. Our first night without Dylan and feeling like I had been horribly betrayed. Thinking that the Dylan who was lying in the NICU was not my Dylan. Not the Dylan who I had planned for.
When Dylan's test results came back a few days after his birth, it was confirmed that he did indeed have Trisomy 21. I remember how two doctors came to find us in the NICU to tell us this. This as well as the fact that "adoption was certainly an option".
I remember sitting at my desk, in tears, writing this post back in September. I was still so scared. So uncomfortable and overwhelmed with the idea of Down syndrome.
I remember open heart surgery. I remember watching Dylan recover.
Then...as Days with Dylan continued on, I watched him grow well and thrive, all the while, without even realizing, I began feeling less and less afraid and more and more in love.
I read something on babycenter recently that rang so completely true for me. It went like this:
I heard someone describe the diagnosis of your child as having Down syndrome is like a loud band playing in your head - it's all you can think about. And, as time goes on, the music gets softer and softer until one day you realize that at some point the band had stopped playing and you don't think about Ds anymore.
I know that we are only at the beginning of this journey, but I can't help but be amazed with how far we've already come.
I just wish...
I wish I had known then, what I know now.
16 comments:
Beautifully written Laurie...it is overwhelming at the feelings we all have going back to "THAT TIME" we all found out...but it is SOOOO true How FAR WE HAVE COME and the blessings we have had! Thanks for sharing...and happy almost birthday!
So sweetly said. I really like the example with the band. How true that really is, huh! Its like at first, that's all you can think about, all you can talk about, all you can wonder about. Then it just starts slowly flipping. I remember the first night Derek and I went home and Gage was in the NICU just like you did with Dylan. I remember telling Derek, "This is not what I had imagined. We are supposed to have our baby home with us today, and here we are alone without him." Luckily, we have all learned and grown so much from these experiences. You are so right, if only we had known then what we know now!
so true.
it's definitely one of those things that even though people told me, I didn't believe any of it until I'd gotten through it myself. I really DO forget about the DS. It really ISN'T that big a deal.
so true.
it's definitely one of those things that even though people told me, I didn't believe any of it until I'd gotten through it myself. I really DO forget about the DS. It really ISN'T that big a deal.
Oh Laurie, why can't we live closer to eachother so I could give you a hug?! That's what I need right now, a hug from another mom who has been where I am now!
Well I hope you know doing this blog and reaching out to other families expecting a child with Ds or just finding out their child has Ds has helped so many people. By learning and sharing your expirences you are helping people learn what you know now, and maybe making that band in the beginning not so loud.
Dylan has been such an inspiration and I know he will teach my little girl :) how to be a great person. I know that my baby will look up to Dylan the way I have looked up to you my whole life.
Love you!
This is so great. I can't believe his first birthday is soon. You have most certainly helped other new moms and dads who are in the same surprising situation you were in almost a year ago. We all have situations in our lives where we wish we knew then what we know now..but I guess that's just a part of what life is.
thanks for sharing.
So well put, those are some of the same emotions we felt. It was hard at first, more fear then anything and wishing I hadn't felt those things as now I see that there is light at the end of the tunnel. Thank you for your post.
You've come a long way for sure! The "if I knew then, what I know now" is SO true, but also SO hard to believe when you first learn of your childs diagnosis.
Happy almost 1st birthday, Dylan!
Beautiful post. I'm right there with you -- wish I'd known then what I know now. I can't imagine life without my little guy. So many blessings in a short 19 months.
I cannot believe Dylan is almost 1!!
Your post brought tears to my eyes.So true
I wish I had known Emmalee then. I wish I knew more about her first fifteen years of life...what happened, who she was with, what her life was like.
The first year is a big milestone, congrats!
Congrats on surviving the first year (and thriving!) It really is an incredibly different view at the end of the first year looking back, in comparison to the blur of those early days.
You've got me crying like a BABY! Today has been a hard day, emotionally, and it is a good reminder how far I truly have come. Thanks! :)
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