I don't really know how to explain this, but I think it's worth a try.
Sometimes it feels - for lack of a better word - strange to me that I have a baby who has Down syndrome. No...I know that "strange" isn't the right word that I'm looking for. But, I can't seem to find the perfect word to describe what it is that I'm feeling...anyway...
I was taking a shower yesterday and all of a sudden I said out loud, "I have a baby with Down syndrome.". And it felt...strange to me. Surreal. Even the words "Down syndrome" felt foreign or distant. Like words that I had never expected would be a part of my life. A part of my heart.
I mean, I know that Dylan has Down syndrome. And I have known this fact for 7 months now. But there is just something that happens when I hear it spoken out loud. When Dylan and Down syndrome are spoken together. I hear it and I breathe in quickly. Just the tiniest gasp, a small intake of breath...like oh yeah! Down syndrome. Dylan. That's right.
I guess hearing it still has the ability to shock me, just a little bit. Is it because I forget? Or because it still has an effect on me?
I have talked about this before with my sister, Kim. She had actually brought it up to me one day while we were chatting on the phone. I was so incredibly relieved to hear that someone else has felt it as well.
I remember about a month or so ago, Dave and I were sitting on the couch and all of a sudden he turned to me and said, "I still can't believe it.". I knew exactly what he was referring to. I said, "I know.".
I wonder... is this is all a part of the journey? Will there be a time when I can hear Dylan and Down syndrome spoken together and not flinch...just the tiniest little bit?
21 comments:
I believe it won't be a 'shock' when you hear it and speak about it after a while. It is still so new to all of us that we are all just getting used to it. I remember when I spoke in a meeting to co-workers about Ds awareness month, and when I was saying it outloud it was eye-opening to me. But I felt so proud speaking about Ds and how special Dylan is. It all takes time L. But I know now when you hear Ds and Dylan you think of love and how lucky we are to have him in our lives, not a scared and upset thought. When I think and brag, I mean speak of Dylan and Ds I speak with pride and love. After I spoke about Ds and Dylan at that meeting, alot of people had questions. I think part of being scared of Ds is the unkown. But if you are lucky enough to have a family member or friend with Ds you will realize there is NOTHING to be scared of, that I know for sure.
I think it's still surreal for me some days. It's not something I think about all the time anymore, so it sometimes feel strange when I "remember" Kailey has Ds.
Oh my goodness, I could have written this same exact post. I still do this, too. It hits me afresh and I wonder if it will always do that. I, too, have said to my DH, "I can't believe this is real!" And the words "Down syndrome" seem to haunt me at times. I have said, "I have a son with Down syndrome," and it just sounds, well, strange. I think it is becoming less strange but I'm not "there" yet.
I have done the same thing! It's funny how we take so much time to "adjust" our minds that way!
Such a beautiful post. This is Joyce. I have been in the world of Ds for almost twenty years now - how time flies. I still have days that I am somehow taken off balance - not shocked - rather wowed by how much more Sarah has accomplished than we initially believed possible, how much stronger we all are, and how blessed we have been.
Now we are entering a new phase, transition into adulthood, and there are times that I am just as afraid as I was when Sarah was a baby. It is that unknown. Not sure what is before us. At least with this phase we have a track record behind us of much accomplishment.
Okay I know I'm no where near where you are just yet in your journey and I only found out a little over a month ago but I still cannot believe the baby I'm carrying has DS. When I really start to think about it that I am going to have a child with DS, it just seems so surreal to me! And I'm sure once he's here it won't change much- I'll still be shocked I guess. Good post Laura!
Sorry- I meant Laurie!!
This might sound strage and Im good with words but I am glad you said this. Many people see their babies as "special needs babies" instead of babies with special needs. We always need to think of our babies as babies first and then their problems second. I often times forget that Alo has so many problems. It has become normal to me. I tend to forget what normal is really like. Sometimes when I am reminded of it I get really down.. Its like I think What?! My baby? Problems? No way! But then I can only BS myself so long.
Obviously I do not know what you feel, but I imagine its just not something you ever felt you would have a part of your life. And even though its been 7 months, its really ONLY been seven months....make sense?
Love you!
Laurie - I've been there (and still visit occasionally.) As I was making dinner this evening I was actually thinking about "it." How our son has Down syndrome. There are days when that diagnosis seems to dominate, and others when it isn't even given a second thought. About seventeen months into our journey I'd have to say that at this stage it has become a non-issue for our family - though it does sometimes resurface after interactions with those who don't know us.
I know that DS isn't a description or label as simple as "my son has blond hair," but at some point it almost becomes as benign of a description.
hugs to you!
-Libby
Michael and I have similar conversations, where one or both of us will say "It's still so hard to believe . . ." Finn and Down syndrome? It just seems so incongruous. I talk about Finn and Ds and I blog about it all the time . . . but really in so many ways the Ds seems very abstract at this point, and I still have a hard time wrapping my head around it. He's just a baby, that's all. I think I understand exactly what you mean.
I do think it is all part of the journey. It can be because you just see your son and forget about the secondary and/or since it’s only been 7 months -the diagnosis- still has an effect on you. As Dylan continues to grow and you get to know him more for who he is, the time will come when it won't be a shock to hear it or speak about it. Everything is going to be OK ~
Check out http://bridgets-light.blogspot.com/. Bridget’s mom posted on Saturday 01/31 about Living in a World of Possibility, she is sharing a beautiful essay called “A Story about My Two Daughters, How to Live in the World of Possibility” by Candee Basford (http://bridgets-light.blogspot.com/2009/01/living-in-world-of-possibility.html).
Dylan has changed all of our lives in so many ways that it's hard not to imagine that he has DS but because of all the amazing things he has done it is still surprising that this little guy could accomplish so much.
You are definitely not alone! I also sometimes get taken back by the thought that my little boy has Ds. It happens almost daily. LOL! But the difference now is that is isn't accompanied by sorrow or pain, but rather by a little surprise and even a little pride - my little boy is doing so well despite the negative connotations that society may place on him - he is just a super star and so is Dylan!
I think there is still a way to go though... but I don't think the diagnosis will ever overshadow our children's abilities and our love for them!
We do the same thing....look at eachother with a "hmmm? who would have thought!?" Life certainly is a journey that is full of surprises!
Kayla's almost 5 and even though I'm really active in the Down syndrome community (boards, blogs, etc.), I just see Kayla as Kayla not "Kayla who has Down syndrome (and autism, too)". She's just my kid and I love her. So I don't know if that weirdness of putting the two (well, three now) things together will ever go away.
I think this too sometimes, "Myles has Down syndrome." Once in awhile it's still with sadness, but mostly it's just kind of matter of fact, and even with pride. I often feel privileged to be part of the Down syndrome community and to be experiencing something different than most others around me. It's like I have a secret that's too great to care if others understand it and what they think about it. I often feel anxious about the future and wonder if I'll have the energy to advocate for him the way he deserves, but then I think about what we've already experienced and know that I will do anything for him. Thanks for helping me process some of these thoughts!
I felt like this when Ethan was a baby too. Now it is what it is and I love him for it. :-)
I think a lot of us forget our kids have DS. I often do. It just isn't who they are and we can't let it hang in front of our eyes, ya know? Life goes on and if we ponder it too much, we'll kill ourselves. Let's just hang out in our fairy world and pretend those words are not involved. ;)
Your post is one I can completely relate too. My son is 13 and it took me a very long time to be able to hear his name and DS without feeling just a little bit sad. Now it seems effortless. I find myself telling everyone, almost giving more information to people than they need. I am very proud of him and thankful that he is doing so well. I have to admit though, even thirteen years later, I still catch myself thinking of our future and thinking, wow, I never expected this to be "my" life. I enjoy reading your posts and getting to watch Dylan grow. We have a very outdated website for our son at www.elijah.net. Maybe some day I'll get to move on to the world of blogging.
I still get taken aback at times, and it has been over a year. I don't ask why, or even why not? It is always, "Really?" Like I have to double-check that it really happened to me. I guess surreal is a good word for it.
Post a Comment