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 My crazy-long story

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MelWen

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Number of posts : 1337
Age : 46
Humor : Laugh off the crazies.
Registration date : 2010-12-02

PostSubject: My crazy-long story   Sat Dec 04, 2010 11:10 am

Since I'm new to the site, I thought I'd begin by sharing my story.... it is a little unconventional, but it's mine! (Sorry about the novel.)

My husband and I had been trying unsuccessfully for some time to get pregnant, to no avail. We had just been transferred to a new city, so I just decided that if it wasn't meant to be then I would just adopt. No sooner than those words came out of my mouth, I found out I was pregnant! I was so ecstatic.

We had a normal pregnancy, nothing to indicate that Cole had Down syndrome with the triple screen, ultrasounds, etc. Toward the end of my 8th month, my water started to leak, so I went in early to have it broken and deliver Cole (50+ hours in labor, whew!) Cole's apgar scores came back normal, no palmer crease, no extra skin on the back of his neck, etc. so we took our little bundle of joy home blissfully ignorant of what the next 6 months would bring.

I joined a new mommies group at the hospital where I delivered. At about 3 months, I started to notice that Cole's development wasn't matching what the other kiddos were doing. My friends didn't believe me when I told them that Cole would sleep 6-8 hours through the night. I took him back to the pediatrician, and asked about his development, and he told me not to worry that all babies develop differently. About a month later I took Cole in for his regular checkup, and I noticed a concerned look on my pediatrician's face when Cole wouldn't follow a pen light. He said it was probably nothing, but he wanted me to run some blood tests and take him to some specialists to get him tested. So, we took him to an ophthalmologist (everything was fine); an audiologist (again, everything seemed fine); a neurologist (again, fine) and a plethora of other specialists. I was beginning to get really concerned because Cole wasn't doing things like lifting his head, rolling over, etc. and he seemed really "floppy." After a few stressful weeks of waiting, we went back into the pediatrician's office, and he told us everything came back just fine, there was nothing to worry about. OK. Again, no biggie. So, once again, we went in for Cole's regular 6-month checkup, and I saw the same look of concern. The doc said he wanted to take some blood to run some tests - he didn't "think" it was anything to worry about, but he just wanted to rule some genetic conditions out. We didn't hear anything for a couple of weeks, so I just decided ok, they would have called if there was something wrong, so I’m just not going to worry about it. It was Christmas, and I had too many other things to worry about.

Then, smack. Two days before Christmas in 2002, we get a call from a doctor at my pediatrician’s office (whom I’ve never met, my doctor was on vacation for the holiday) and I was told they had some bad news. The test came back positive for Down syndrome. I think my knees buckled and I started crying. I don’t really remember, it was all a haze. I went to bed, for about two weeks and did nothing but cry. It was just all so overwhelming. I didn’t even know what Down syndrome was. My only experience of ANYONE with Down syndrome was the neighbor boy whose lawn backed up to ours. His parents kept him in the house all the time; and he was never allowed out to play with us. He’d watch us through the window, and sometimes would yell to us, and we never understood what he was saying. We thought he was “weird.” All that I could think was that I’d be straddled with this child for the rest of my life – never being able to go on vacation, retire, or brag about all the things he did. All the dreams I had of him being the quarterback of the football team, homecoming king, and grow up to be a rocket scientist (hehe – because you know I was all of those things - not) were dashed.

My husband let me cry it out for about two weeks. Then, he came into the bedroom and told me that he couldn’t do this by himself, and handed me Cole. As I looked at him, surprisingly, it was the same baby that I’d already fallen in love with. He made the same noises, looked at me the same way, everything was the same, but none of it was. I just felt this overwhelming sense of love for this little guy. It was at that moment that I decided to get out of bed. I was going to do everything in my power to help this little boy.

Next, came the anger. I was angry at the world. I was mad at everyone who looked at my baby and told me that he doesn’t “look” like he has Down syndrome; or that would say, “He must have a mild case of Down syndrome.” I was mad at the doctors and specialists who didn’t catch that he had Down syndrome. I was mad at everyone who told me I should get a second opinion. But mostly, I was angry with God. I had a difficult childhood (I won’t even begin to get on that subject, that is a whole other novel) and I turned out all right – I put myself through college, found a great guy to marry, I was a good person. Why was I being punished? I decided from that point on that I was an atheist, that there couldn’t be a God, if so, why would he bring so much heartache into my life.

Fast-forward about 1 year. I took a girls trip with one of my friends – Dee. It had been a long, stressful year, so she and I decided to get away for a few days. Anyway, one night we were having a conversation about how angry I was, at everything. I felt like I had become this bitter old woman (the kind who lives alone and has 15 cats.) She looked at me and said that she didn’t understand… every time I talked about Cole my eyes lit up. Everything he did, I would brag to her about. She didn’t understand where my anger was coming from. It was like an epiphany for me. My non-religious friend had just made me realize, that my life was not a punishment. If anything, I had been given this amazing gift that I should enjoy and appreciate. I had been truly blessed and was able to experience something that most others would never understand.

From then on, I’ve had a sense of peace about it all. I am exactly where I’m supposed to be. Of course there have been ups and downs, but I’ve been entrusted with this amazing little boy, who makes me smile and brings me so much joy every single day. He seems to bring out the good in everyone. People immediately fall in love with him and want to be around him. I used to watch the news and think this world was such a bad place… now, I get to see all the teachers, therapists, other parents, etc. that are so amazing, and I realize that there are so many more good people in the world than there are bad. Cole has truly made me a better person, and I’m so grateful to have been chosen to be his mom.
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PostSubject: Re: My crazy-long story   Sat Dec 04, 2010 1:05 pm

Speaking of the other thread, asking if we cry http://downsyndromejourney.forumotion.com/question-of-the-day-f8/december-3-t2928.htm, I just welled up with tears reading this. Although I knew a good portion of your story, this just gave me so much more insight to what you went through. I love your honesty, and that you let us in on your incredible journey. You are an amazing person, and I am just SO thrilled that God knew to have me live near you, and have you be from Wisconsin, so that we would have that connection that helped us be friends! SO glad you joined sister! Love ya. Di
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DebbieH

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PostSubject: Re: My crazy-long story   Sat Dec 04, 2010 3:22 pm

Yep, that one needs a tissue warning! Thanks for telling us about your journey! It's beautiful!! So is Cole!!!!
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STEPH

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PostSubject: Re: My crazy-long story   Sun Dec 05, 2010 10:59 pm

That was a beautifully honest story. I loved it. We've all been picked to raise these AMAZING children....we really are blessed.
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Erin's Mom

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PostSubject: Re: My crazy-long story   Mon Dec 06, 2010 8:20 am

What a beautiful story!!! First, I have to say, I am always just amazed at how those on this Ds journey can get such a late diagnosis. I think Meredith also had a late diagnosis. I always thought, wow, I guess those doctors dropped the ball....However that was not the case with you, as Cole had a slew of tests! Just proves that our kids are all so different and God has a plan, unique for each of us. Do you think now that getting a late diagnosis was helpful in your personal journey, or do you wish you had the diagnosis at birth? Just curious.

Secondly, yes, Cole brings out the best in everyone, and he started with his own parents. LOVE that part!!! Erin has done the same for me. Yep, our kids are a gift, for sure....little hidden gem that teach us how to love better. Thanks for sharing your story, I really enjoyed reading it!
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MelWen

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PostSubject: Re: My crazy-long story   Mon Dec 06, 2010 9:40 am

Thanks ladies....you know, I have to admit, I'm not sure if the late diagnosis was helpful or not. My husband and I have talked about this. He's grateful to have brought home Cole, and had a somewhat normal existence for a short time. I would have liked to have known sooner so that we could begin therapies right away....

With that being said, at the time, we weren't "religious" people... I grew up in the Catholic Church but hadn't gone for years. I would like to think that I wouldn't have terminated the pregnancy had I known, but who knows what my mindset would have been at that time. In the end, it just re-enforces my belief that God has a plan for each of us, so I guess I wasn't supposed to know Cole had Down syndrome until after he was born. Of course if you'd ask me now, I'd tell you that I wouldn't change it for the world. And, Cole is truly a gift from God.
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STEPH

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PostSubject: Re: My crazy-long story   Sat Dec 11, 2010 2:24 am

With that being said, at the time, we weren't "religious" people... I grew up in the Catholic Church but hadn't gone for years. I would like to think that I wouldn't have terminated the pregnancy had I known, but who knows what my mindset would have been at that time. In the end, it just re-enforces my belief that God has a plan for each of us, so I guess I wasn't supposed to know Cole had Down syndrome until after he was born. Of course if you'd ask me now, I'd tell you that I wouldn't change it for the world. And, Cole is truly a gift from God.[/quote]

I know how you feel. We didn't know until Daisy was born, and she's added so much to our lives and she's just AMAZING, so I'm so happy we didn't find out during the pregnancy because the thought of having to make the decision especially when, from what I've heard, most docs advocate termination, is hard to swallow. When I look at her I can't imagine life without her and can't stand the thought of someone advising that I "do away with her".
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