So Blessed

Some of you might not know that I am Program Coordinator at the Spina Bifida Association of Kentucky. I started there a year ago (one year and two days ago, to be exact!), and I couldn't ask for a more perfect job. It doesn't pay much, and I don't get any benefits, but the perks of the job are priceless. I'll give you an example.

One of the things I do is plan classes for families, and recently I had a Bowel Management Programs class, where a nurse explained how to help your child achieve healthy bowels and social continence with diet, enemas, surgery, etc. At that class, I met a woman named Becky and the woman and child she is hosting from Ukraine. The 6-year-old little girl, Mashiya, has Spina Bifida and is in Kentucky temporarily "to get her feet fixed" (not sure if she had a surgery or just casting). While she's in the States they want to get her all the resources they can.  Becky took notes about the bowel management programs, and she said she would translate it all for Mashiya's mom later that day.

At the end of the class when the nurse asked for questions, Becky (who has no reason to be familiar with Spina Bifida and only recently met this child) asked if there were any management programs for the bladder as well, because Mashiya can't control her bladder. For a minute there was silence, as we were all realizing that this little girl is probably not seen by a urologist and she and her mom know nothing about cathing programs. There were several nurses in the room, and the general consensus was that although it might be possible for Mashiya to one day become socially continent with bowel management, cathing, and medication, that was beyond the scope of what they could do during the short time she's here. We don't know if the medications and supplies are even available there. That's when Becky said, "So ... this means she'll be in diapers the rest of her life." A nurse answered, "Yes."

I've been thinking about Mahiya ever since. This little girl is so pretty and appears to be smart and social. But will she be accepted in Ukraine as an adult who wears a diaper? We often worry about our children not being accepted, but we really take for granted how much people with disabilities are accepted in the US (I know not all of you are American, but that's the perspective I can speak to). It is not so in other parts of the world, where there is really no question about whether you will terminate a special needs pregnancy--it is standard, expected, and almost mandatory--and there are still countries that provide "comfort care" (as in, keep them comfortable until they die instead of treating) to children who somehow slipped through screening to be born with Spina Bifida. Where there are few people with disabilities, it's even more difficult to gain acceptance.

After the class, Becky asked me if I could help her find Mashiya a wheelchair. Shriners supplied her with crutches, but she would need a chair for distances. They were also looking for an adaptive trike for her because she was using one in therapy and absolutely loved it. When I got back to the office, I dug through our storage and found a small wheelchair. After talking with Mashiya's therapist at Shriners, I decided I need an expert to measure the chair to see if it would fit, so I took it up to the therapy center located in the same building as our office. I just so happened to get in touch with a therapist named Melinda, and after I told her who the chair was for, she pulled out a picture of Mashiya she had on her desk!!! It turns out Melinda has been on mission trips to Ukraine, and somehow she knew of Mashiya and was trying to help her come to the states for her foot procedure. She didn't know she was already here! Talk about a small world. Melinda told me about her experience in Ukraine, and that even Kiev is not at all accessible, and people with disabilities are generally not accepted or valued.

Well, the wheelchair was too small, and so was the chair that Melinda found at her therapy center, but Shriners eventually found Mashiya a chair. On Monday of this week, Becky called me and said Mashiya and her mom are going home next week, but they would still like to find her a bike to take home because she enjoys the one at therapy so much. SBAK just happened to have a bike just her size that another family had donated a few months ago! They were thrilled!

So, back to the perks of my job. Today I got to deliver a bike to a little girl who loves to ride and otherwise would never own a bike she was able to ride.

Becky and Mashiya's mom wanted to meet Nate, and as I was taking Mom (I don't know her name) over to meet him, she asked me, "Do you do this cathing?" It broke my heart and gave me hope at the same time that she's still thinking about this and following up on it. It makes me wonder if they all went back to Becky's house the night of the class and looked up information about cathing and asked to see a urologist to talk about their options. I don't know. I did tell her to stay in touch and I would help any way I could.

Mashiya and her mom go back home next weekend. They are taking home with them a wheelchair, crutches, a bike, some sparkly new shoes for Mashiya, and who knows what else. But I think they are also taking home information and hope they wouldn't have found otherwise.

But they've also left something with me. We get so caught up in what our kids can't do and how busy our therapy schedules are and how unfair it is that we have to see all these doctors and cath and whatever else, and we totally forget how incredibly blessed we are.

I cannot even express how grateful I am that Nate was born in the time and the place in which he was born. 50 years ago, or in another country--Nate's story would have been totally different. Fetal surgery still seems like it belongs in the time of robots and flying cars to me, but that was available to us. We have resources that many would kill for--Nate rides a horse and swims and rides a shiny red bike and goes to a school that accomodates him.

We are SO. BLESSED.