Thursday, October 9, 2008

Taking a small detour

To wish my favorite boy a very Happy Birthday. It's a day late in coming because yesterday was full of celebration, just the way it should be.

Happy 11th Birthday Ben !!! I'm so glad you had such an awesome day and that it was everything you envisioned and more, you are so deserving of it.

For those of you that don't know Ben or know him but have never heard his "Story" I would like to take a few minutes and share it with you, it's a very uplifting story about faith, love and perseverance.

In July 1992, we had one child, Victoria, she was 5 months old, her Dad and I dreamt of having a house full of kids and wanted them all close together, so we started trying for #2 thinking that it would be a piece of cake, the other 2 times (1 ended in M/C) Marc only had to look at me and I got pregnant, this time was not meant to be that easy, after 6 months I went to my OBGYN and voiced concerns, he had us doing the temping thing and everything seemed 0k, after 3 months of that and no luck he had a lot of bloodwork drawn and my levels came back so so, he diagnosed me with PCOS, though reading about it and knowing people who have it, I have to question that diagnosis. I was given meds to take and given another 3 months, again nothing, after 1 year of absolutely no luck we were referred to a Fertility specialist, he couldn't find any reason whatsoever as to why I wasn't conceiving, I was young, healthy and prime baby making material but it just wasn't happening. We then spent the next 3 1/2 years doing one fertility treatment after another, all with the same outcome, one time I did get pregnant but again that ended in M/C, it just didn't seem like we were supposed to have more.
During this time we had become best friends with some neighbors, they became Foster parents and their first Foster child won our hearts quickly, we spent many, many hours with them all, after several failed attempts of that little girl being adopted out, Marc and I started talking about it and decided that we wanted her to be a part of our family. We started the ball rolling and were extremely excited at the prospect of having 2 girls, things were going well and then suddenly out of the blue in January 1997 I started to feel not so good and realised my AF was late, I knew I couldn't be pregnant, but figured what the heck and took a pregnancy test anyway. That test turned from a - to a + within seconds, I was in total shock.
I made all the phone calls and then had to call the adoption agency, we told them we still wanted Alyssa, but they wouldn't let us continue the process, we were heartbroken, yet at the same time celebrating the fact that we would be having another child. A couple of days after that + test I started bleeding, it scared me to death, I went to my OB, he told me things were too early to do anything about and basically sent me on my way, telling me to come back the next week and they would check for a heart beat. The following week I went back and sure enough there was no heartbeat, I tried to tell the OB that I wasn't as far along as he kept saying and all he told me was "Mrs S, we will give it one more week, if there is no heartbeat we will go ahead and do a D&C." I was totally horrified and told him no way and all he told me was "If there is no heartbeat next week, we will know that it is a non viable fetus." I looked at him square in the eye told him he was wrong and that I would not allow him to abort my baby. As scared as I was I knew that I hadn't come this far only for God to take that baby from me again. I knew that Dr was wrong and made an appt to see another Dr at a totally different practice. We went the following week and sure enough no heartbeat, and why ? Because it was too early, I was told to wait one more week, we should probably see something then, and sure enough we did. Thank God I went with my gut and changed Drs.
The following 5 months were full of all day morning sickness, it was wretched but knowing the final outcome made it all worth it.
On October 8th, 12:33pm he was born. It wasn't the easiest labor that ever was, he got stuck and they had to vacuum him out, he had a bowel movement on the way down the birth canal and swallowed some meconium, it was touch and go for a while and he had to spend some time in the NICU but after 3 days he was ok to come home.
For some reason that first night home I decided that I would sleep in the nursery with him and thank God I did, in the early hours of the morning I was awoken to a horrible gurgly gasping sound coming from the bassinet, when I turned the light on and got to him he had already turned blue, and had foam coming from his mouth, I smacked him between his shoulder blades and he let out an almighty wail, pinked right up and nursed like nothing had ever happened. The following day I took him to the Ped and sure enough he had some fluid in his lungs.
After that set back things went on as normal for the next 11 months, things seemed normal, we went about our days like any other family, Ben was doing great, other than he couldn't pull himself up, standing seemed to hurt his legs and he'd crumple to the floor, he couldn't get himself from a lying to a sitting position and wasn't even attempting to crawl. The day after his first Birthday he was diagnosed with Spastic Diplegia... A form of Cerebral Palsey. We were told that best case scenario he would have to have extensive PT the first 5 years of his life and walk with leg braces, the worst case scenario was that he would be in a wheelchair for the rest of his life.
As in typical Ben fashion 1 week after this diagnosis he pulled himself up on his walker and took off like a champ. I called the Ped who called the Neurologist and they were both completely shocked and couldn't believe it.
At 2 1/2 years old we were referred to a speech therapist as he wasn't making any intelligible sounds, we had him checked for hearing problems etc and everything came back normal, he just had a speech delay and so he started Speech Therapy. Things just plodded along as normal, we noted that he was always the slowest in his class when it came to running and his gross motor skills just seemed off. By this time we had moved to a town in the middle of nowhere, the Ped there was horrible and treated me as some neurotic mother.
It wasn't until his Kindergarten graduation concert that I noticed when the kids were singing that Ben didn't move his mouth the same way other kids did, it was the wildest thing to see.
I reported this to his Speech Therapist the following day, after several sessions with her, she told me that he needed another complete neuro and OT assessment as something was definitely off. He had also started falling for no apparent reason and his speech was slurred. The fear was that he had had a minor stroke and it had gone undiagnosed. CAT scans came back negative for that thankgoodness, but she did note a very very small area in the brain indicitive of CP, again we were looking at this, finally it was put down in his charts that he does have CP and it's about as minor as you can get it.
He will never be the fastest kid on the block, he will never be the most co ordinated but that's ok the fact remains that he is an amazing kid who has a love for life, he shrugs off most things that most people would fall apart at, I think because of what he has dealt with it has made him a lot more compassionate for others. He's a true humanitarian and I am so proud of him.
Last week when I asked him where he thought he would be in 20 years he looked at me like I was crazy and then said "I'm just a kid Mom, I don't need to worry about that yet." But we did go on to talk about life and his dreams, he wants to be a pro skateboarder, LOL, he knows the reality of that happening, but he can dream, I asked if ever thought he would want kids and his face just crumpled, he's always loved little kids, he just melts when he's in their presence and he said "Yes, I want lots of kids." He then went on to tell me he wants to work with young children, probably those with special needs. Really it didn't suprise me, I've always said when Ben gets married it'll have to be to someone that wants a whole slew of kids, one or two won't be enough for him.

Ben, Im so very proud of you, I love you so much it almost hurts.


Lisa said...

Penny, although I have known you through a lot of Ben's life, I have never really heard the entire story like this. It brought tears to my eyes. You have a very special little boy there.

Happy birthday, Ben!!! You are lucky to have such a great mom!!

Karin Schueller said...

You have such an amazing family, and each member has his or her own story. I had no idea that Ben had CP, or that you had struggled to get pregnant. ( it just me, or was Regan REALLY a surprise then?) From what you have told me Ben is an amazing kid. I hope someday I get to meet your family in are all amazing.

Kat's Credence said...

Thanks for sharing, he's a remarkable boy for all that you've told!

Bean said...

I don't think I've heard the entire story before now, either (((Penny)))

*~* Happy Birthday Ben *~* I can't believe how tall you are next to Rea now, and I know she's pretty tall for her age, too!!

Google Analytical