I posted this also at Postcards from Holland. A few weeks ago, I was looking through some old archives at an internet message board where I’ve been a member for approximately 6 years. The topic of the board centers around Moms with children born in January 2001 – a “Mommy Playgroup” if you will. And this particular playgroup centers on my “typical” son, and not my “special needs” daughter.
I found a post I had written about some of my difficulties early on with Jenelle. It was moving to see how far I’ve come – but also a reminder that this journey through the land of special needs is such a roller coaster of emotions. I thought I’d share parts of that post here, so those of you with special needs children could remember that you once felt the same, or maybe that someone new to this experience will find comfort in knowing these feelings are very normal.
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August 19, 2003
(note: Jenelle was only 9 months old at the time, and at this time, we did not know she was having seizures. We just knew that she was "delayed" and did not have any other diagnosis.)
I haven't shared any of this here yet... I mostly post these feelings on the support group boards I've found for special needs kids. I just realized that I should share all sides of this with all of you and not just share Jenelle's updates and improvements, so here goes …
I had to go to Babies R Us last night to get some formula -they are the cheapest around for the bulk size of Good Start. It didn't bother me before, but now it gets to me. You see all these babies, grasping at things on shelves, sitting up, babbling, etc. Then you see all these baby gifts like baby books, milestone charts, calendars, teething rings, walkers, bicycles, etc. I look at some of the toys, and think, that might help Jenelle, and then see the age range is for a baby 0 months to 6 months and that reminds me again. That part of this journey is so hard.
Two weeks ago I hit my low, and posted about it at a special needs board. Everyone there understood what I was experiencing and I got some great feedback and support. Then that night, I went grocery shopping, and at the checkout the cashier asked if I wanted to donate a dollar to “Jerry's Kids” and I lost it again mumbling while fighting back tears that I had my own “Jerry’s Kid” at home. Friends of mine are pregnant again or have recently had new babies. It hurts to hear about their newborns and their recent accomplishments. I keep them posted about Jenelle, but I never share these feelings I'm sharing here. It hurts to hear that a 3 month old has mastered rolling, to know that Jenelle only started doing it last week at the age of 6 months. It hurts to hear a Mommy complain about her Baby pulling her hair, when I wish Jenelle would even take an interest in playing with mine.
I get over these feelings pretty quickly and remember this is a stressful time we are experiencing, and that I'm not the first parent to have a child with special needs. Then I go to Babies R Us for formula... and I’m hit with the pain all over again.
Just wanted to share that I am experiencing both sides of things. I know you all would understand.
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Remember the pain of the unknown? How do we overcome it – or do we just learn to accept it? These feels are still fresh, but the sting isn’t as painful. There is hope and things do get better. If you are just starting this journey – remember that! You will find a way to survive, and make it through!
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4 comments:
Thank you for this post! As someone who has just started down the special needs road, it helps to know I'm not alone with these feelings. I have a nephew that's 6 months older than Julia and when I think about what he was doing when he was her age now, it tears me up. The not knowing is the worst, for sure. It's almost like if I could just know, I could begin to grieve and to deal with it. You start to have hope and then get scared at your optimism. The unknown sucks!
I've been there too - my oldest "special needs" child has a cousin 2 months younger than her and I was constantly hearing about EVERYTHING she was doing BEFORE Taylor was doing it and then it happened again with my youngest "special needs" child and a cousin 1 month younger. I used to let it bother me, but found out that only got me more upset, so now I ignore or try to explain and hopefully that will make people that don't have to deal with a similiar situation understand and not be so insensitive.
Bless you--I too have wanted to say, "No, I have a Jerry's kid at home." I'm glad to have discovered your site. I might have received an email from you once a long time ago at the Pediatric Epilepsy Project email address I monitor? I seem to remember.... Forgive me if I'm wrong, and know that from one mother of a kid with IS to another, I am with you.
Yes, we have emailed before about PEP! Sending you another email now as I do not have a Wordpress account so I can't comment on your blog! ;)
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