Monday, October 19, 2009

Supporting Our Community

Being a member of the Ds community has brought me into a world of such beautiful and diverse people. People I never would have known if it weren't for Sophie. They carry me. They've encouraged me, educated me, accepted me, argued with me (hey, we're as diverse of a group as the general population). Yet, we are a pretty tight knit community and when the need arises, we jump to each other's aid without hesitation. This is just a snippet of what's going on in our community.

Please check out this really cool raffle for friends of ours over at the Flege Farm (who happen to have a little girl with Ds). The raffle is HERE and will go towards helping the family as the dad recovers from heart surgery. There is some pretty cool stuff over there to bid on and it's not too late to contribute an item to be raffled.

Other dear friends of ours, the Marchenkos (who also have 2 little girls with Ds, one biological, one recently adopted) have just received news that their sweet daughter Polly has Moya Moya syndrome (in addition to Ds) and had a stroke and seizures on Sunday.

A family I've gotten to know and love have just received word that their daughter Quinn, who happens to have Ds, is cuter than a bug's ear and is just turning 2, has been diagnosed with infantile spasms.

Jaxson just got his trach and won't go home from the PICU until maybe Friday, amongst many other issues.

So ya, sometimes in the world of special needs come particularly heart wrenching experiences. And yet, we endure. We go on, because we have to. Because of a love and perseverance that other's sometimes can't understand. Despite the trials, most that I've known have testified that having a child with special needs has enhanced their lives, their very souls.

Two sets of friends are getting ready to travel internationally to adopt children with special needs, the Stumbo's are adopting a little girl, Nina, who has cerebral palsy. The Garcia's are adopting a little girl, Kellsey, who has Ds. Both are adopting through the amazing international adoption organization Reece's Rainbow, which assists orphans with Down syndrome and special needs in finding their forever families. Both are still collecting donations and running raffles and fundraisers. Both already have daughter's with Ds. Both are travelling a road that Mark and I may, someday, travel ourselves.

Check out their blogs, send good thoughts or prayers, donate or be a part of their raffles if you can. And, if you don't mind send a prayer for my son Alexander. Though it does not compare to some of the other issues our friends are facing, he has the flu and has had a fever for 3 days. We put him to bed tonight with 102.5 temp, a deep wet cough, and the chills. He's not eating or drinking much and is not himself. I pray he gets rid of this virus quickly. I pray none of the rest of us get it. I pray it is not H1N1, but on the other hand if it is, I can't do much about it.

I still struggle until I'm sick to my stomach with whether or not to vaccinate Sophie or any of us for H1N1 (as she is considered high risk for complications). I've spoken at length with her ped in town and just today spoke to her Docs at St. Louis Children's Hospital about my fears. I fear the vaccine will hurt my baby. I fear that if she gets H1N1 (well, you know the fear). I fear that the decision is out of my hands because as they said to me today, there is a much higher chance that she'll catch H1N1 than she has of accessing the vaccine in time anyway, as it won't likely be available for a while. Oh, and I have a 5 month old that I'd really rather not see catch any form of the flu.

So ya, it's a bit of a Debbie Downer post, but it's as real as it gets. So, please do what you can. Pray, send good thoughts, and bid or donate as you can.


Karyn said...

Thank you so much Jen. I love checking in on Sophie too. We are family.

Mommy to those Special Ks said...

Thanks Jen!!! :)

amy flege said...

thanks jen!! isnt it wonderful to be apart of such a great exteneded family??? hugs!

gillian said...