Monday, 26 November 2012

Living in limbo

As Kristi from Finding Ninee puts it, we live in a place she calls The Middle World. And I have to say that this is so true.

After almost five years of trying to find a diagnosis for Sunny's delays I came to realise and accept that we might never find a reason, get a diagnosis for it. I am really cool with that now. Sunny is Sunny, independent of any diagnosis. It would not change his therapies or how we treat him. It would not change my unconditional love for him.
 
However, having a diagnosis makes some things easier. As soon as your child is born and, let's say, diagnosed with e.g. Down Syndrome, your world collapses. You probably feel like you are drowning, like you are burnt alive, like your world will never be the same again. You grieve for the child you wish you had but never will have. But eventually, theses wounds will slowly start to heal. You will reach out and find that there is a great community of people with Down Syndrome or parents with DS kids out there. You will browse the web and find lots and lots of information about Down Syndrome. You will become part of a whole new "family" where you are understood, supported, and lifted up again when you feel sad and full of despair. And though you still grieve, you know what lies ahead of you and you can start to move on.

We parents living in limbo do not have these "privileges". Very often, our children are born and everything seems perfect until the first milestones are missed. At first, we do not make a big deal out of it and try not to worry. But then the next milestone is missed. And slowly, the process starts. We drown time after time, feel our worlds crumbling again and again, when in the course of the years while our children grow we realise that there are more and more milestones they are missing. So we hope for the next milestone and are disappointed when it does not happen on time. We hope and hope and our hopes are destroyed again and again. We grieve for years, again and again, because we are told that our children are "only delayed and might catch up with their peers". But some do not catch up and hopes we had are shattered again and again.

Moreover, as time passes, there might be more and more issues coming up, things that weren't on your agenda before, and you feel that it becomes more and more difficult instead of easier. But there is always hope and that is what keeps us going. And then there is grief again. It is a constant state we are in and it may take us years to face the fact that our child might never catch up the way it should. You are in limbo, hoping for the best and expecting the worst. Because your child is "only delayed" and will hopefully catch up on everything, right? But reality taught you otherwise over the years.

Apart from that, "developmental delay" means nothing and everything. It is such a vague diagnosis that no one not into this thing does really know what it means. There is not much information about it because every child is affected in a different way and severity which makes it impossible to provide information suitable for every delayed child.

So, all we can do is try to find our way through everyday life with love, grace and laughter.



12 comments:

  1. Hi! I love this post. It's so wonderfully written and you said it perfectly that "developmental delay" means nothing and everything. Glad we found each other in cyberspace. We can be our own support group. DDWND moms! (developmental delay with no diagnosis). :) Keep up the great writing.

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  2. i would love to subscribe by email! can you ad that gadget/widget to your blog? thanks!

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    1. Hi Misty,
      I think you can subscribe if you enter your e-mail address where it says "Follow by e-mail", no? I had it placed below Feedjit originally but I just changed that so that it is more easy to find. Or do you mean something else? Please let me know and I will gladly add it!

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  3. Oh I was a teacher way before I was a mother and can tell you that developmental delays can change and even lessen over time. That said as a parent we worry constantly and I know that with both my kids I waited patiently to make sure they were hitting their milestones on time. My first was ahead on so much, but then when it cam to talking she only said a few words here and there by 18 months old. I remember freaking a bit and worrying. I was told it was ok and as long as she was talking not to worry, but I still worried. That is what we do as parents irregardless. So I can relate here and thank you so very much for sharing your experience and feelings here. TALU

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    1. Thank you for your comment, Janine! And thank you for the encouragement! I will always have hope for my son, this is something that will never change. But right now the gap to other children his age is widening instead of closing so I am not sure he will catch up. But in the end only time will tell.

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  4. Very well said. I have a dtr like you describe: many things "wrong" but no all-encompassing diagnosis. Sometimes it's nice to have that handle to hold on to, or an easy to comprehend word to throw out when people have questions. But it is what it is. I don't so much grieve for the child I "could have had" with her, b/c we adopted her when she was nearly six, so we were aware of some of her issues. I DO, however, often grieve for what SHE will miss in her life. Things that she will not be able to do b/c of her disabilities.

    Anyway, nice to know someone else out there gets it. Thanks for linking this up with the TALU!

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    1. This is a good point: being sorry for what our kids will miss in their lives. I am sad about that sometimes, too.
      Thank your for visiting and for commmenting!

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  5. So glad you linked this up on TALU today; you are so articulate and you voice your deepest feelings and thoughts so beautifully. Thanks for sharing with us- your writing is a gift!

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    1. Wow Stephanie, thank you for your beautifil comment! Frankly speaking, I do not consider myself a good writer, therefore I love that you do! xo

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  6. Wonderfully written. Thank you for sharing.

    TALU

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