Thursday, July 1, 2010

Trying so hard

A while back I wrote a review of the amazing episode "If" on Desperate Housewives. They tackled the subject of having a special needs child, in an amazing manner. At that time I wanted to post a link, or embed the video from this episode, but I was unable to find it on you tube. I just decided to look again, and it is now listed. It's a bit lengthy, but if you haven't seen it, it's worth watching. After I had written my piece on the show, I heard from the writer of that episode. She explained to me that she too has a special needs child, so the piece was written from her heart. I think you can really tell, because any special needs mom will tell you she has sat on the washing machine, and bawled her eyes out. There are two links to the video's.

One of the reasons I started searching for this video again, was because of our experience with Jude last night. Jude was on his tummy again, and he is working so hard to actually move. Mike helped push Jude's arms in the correct position, and suddenly Jude's head popped up. It was obvious that Jude knew what he was doing because he kept trying to look back at me. Mike then helped Jude scoot a few spots, and Jude seemed very happy. Mike looked at me and said "That proves to me there is a little boy in there trying to get out". It's so true. Jude is trying very hard. Today Jude went and was fitted with the orthotics for his legs. Next week he will go visit his GI specialist who will again evaluate the possible G tube situation.

Mike was editing photo's that he did for some friends of ours last night. Gena lives about two minutes from us, and has a daughter, and her son Frankie that is special needs. We have labeled Gena our "Diaper fairy", because she leaves packs of diapers for Jude all the time. It has been a tremendous help. In return for all her help Mike gave her kids a free photo shoot. Normally he charges $150 for a full shoot, so we hoped it might repay her for all her kindness. I have also really been nagging at Mike about how I want us to shoot special needs children in addition to his other shoots. He agrees this is something we will do, and I am just thrilled!!! Sometimes we parents of special needs feel so limited as to where we can take our kids from daycare, to the movies, to a photographer that has actually patients. Gena told us the last time they tried to have photo's done the lady told her to bring Frankie back after a nap, people are so ignorant sometimes. So here is the image Mike caught of her son, and I just love it!


Candace said...

Good stuff, Jenn! Tell Mike he should start a business photographing s.n. kids. There is a couple here who specialize in that. They have a daughter who has s.n. and they seem to do wonderful stuff! Mike has a real gift...

Purple Quilter Queen said...

Jenn - that's a great photo. Mike has a real talent! Best of luck with his photography business. I'm sure there are alot of parents of special needs children that would be thrilled to have someone like Mike take photos of their special children. He's really captured a beautiful side of Frankie in that photo. Jenn

connie said...

I absolutely know the feeling about fighting things every step of the way, especially when we feel someone is giving up and we aren't sure something is actually needed. Like your son and the feeding tube possibility.

But I did want to tell you that sometimes after a decision is decided on, and it's a decision to do something we struggled with, the very thing we resisted, we learn to see as a blessing to our child. For us, a NICU stay was a blessing (they learned how to use caffeine to control her apnea, which was very life-threatening). The g-tube is a blessing, and even if she suddenly were to begin to eat by mouth, I know we would NEVER have the tube taken out. I am shocked when other parents I know make that decision, actually. :) I didn't say I don't agree with their decision, because I am not in their lives, but I am shocked. A tube is always a blessing. "Having" to use it carries a sadness, but the fact that it is there, and was such a "small" procedure? No question that it blesses us daily. I fought for 3 years, and more fiercely at certain points in my daughter's life, the fundoplication surgery. I still can't believe I fought it. I know why I did, but I also didn't even ask the pedisurgeon, who we trust and love, to discuss our (ok, "my") reservations, bec as it turned out, my fears were unfounded. Initially, the tube alone was all she needed, but later on, we had a really scary aspiration where her larynx closed off and mouth-to-mouth and "bagging" would not get air into her ... and I can't even describe the scene. We absolutely should have had her get the Nissen (fundo) surgery then, but I refused to hear. Now she has had it, and I grew a lot out of the situation, because I learned that my daughter can be compromised because of my unwillingness to just listen and ask questions.

Anyway, long way of trying to say that if you do end up deciding that the tube is right for your son, and only you guys can know that, ... it will take very little time before you feel really, really competent and it's a non-issue in your lives, and one day you will be blogging about the blessing of a tube. It will not prevent him from eating by mouth, either!!

And his sister will enjoy learning to feed him through his tube. Really!!

connie said...

I hope the comment I just sent went through - it almost looks like it did not. If not, please leave a comment on my daughter's blog and I will try again. :(