Thursday, July 30, 2009

Why South Dakota???

So many people have been asking, I thought I would write about our decision to go. For me, this is about acceptance.

Caring for a child with needs as complex and intense as my daughter is a daily challenge. So many people write about the joys and gifts of having a child who is different or ill that I rarely do... it feels like an over wrought and cliched genre to me. But before I start on the demands and complexities, I want to say, "I get it." I get the pleasure and the wonder of her absolute unconditional love for her family. I revel and celebrate in her accomplishments and ours in supporting her. 

I don't know if I will ever really welcome Rett Syndrome or embrace it as a life lesson as some people have. Perhaps that level of acceptance is way down the road for me. I think I may be in a place where I can forgive myself for not going there. I'm OK hating what Rett Syndrome did to her, and regreting its impact on my family. I'm also more than OK in my role as her mom; I am a fierce mama bear. That is all I am and ever can be as her mother. 

But this life comes with a price. In the same way that no one really gets what it is like to be a new parent and care for a new born until they do it themselves, no one really gets what it's like physically, emotionally and spiritually to raise a child with complex needs who is always on the brink of disaster. Raising children is rewarding, hard work. 

Going to South Dakota to live on the farm is my point of surrender. It is reclaiming a life we always wanted and had almost given up on. For years we have stayed in the Bay Area, near the best hospitals and therapists, hoping for treatment and cure.  Now I know. Nothing we can do here can stop the progression of her illness. And there is a lot there we can do to have a better quality of life, for her and for the rest of us. 

So this is about accepting that I have no control over Rett Syndrome and that I want her to have the best life she can each day. Maybe there will be a cure. But we can hope for that, and work for it too, from there. While we feed the chickens and ride the horses. 

Wednesday, July 29, 2009

Home Again and Packing!

I had to take a bit of a hiatus from blogging-- things have been in a whirlwind!! Back again and getting ready to move. First things first, I promised a retrospective on our travel adventure. 

Just to create a picture: family of five with three kids ages 8,7 and 5, one service dog, a wheelchair and (thank you, hold your applause) only ONE checked bag and one ACTUAL carryon size bag each! We show up at the ticket counter. Sane people see us and run to get in the security line ahead of us. Business travelers groan. To get a sense of what we are up against, my daughter with a disability is, in addition to having cerebral palsy, autistic, very sensory defensive and tends to have seizures under stress. So we had all that going for us. 

At the ticket counter, the agent changed our seats for the first leg of the flight: the bulkhead is the only place to sit with a dog. People may try to convince you otherwise, and leave this to the gate agent, but the easiest place to do this is the ticket counter at check in.  He could have changed all of our seats but did not. More on that later. 

TSA was fantastic. Having been sent to secondary and practically strip searched when traveling on business, I was expecting the worst. But they were so kind and patient with my daughter. They opened up a second line for the family and put us all through together. We had ensure, baby bottles, gel valium and syringes. No problem. And the dog was great. Seriously, I think TSA agents should have service dogs. For the agents. We had service tags on the dog and a letter from our doctor but did not need any of it. Once they were sure we did not have a scud missile hidden in her chair, we were home free. 

We checked the wheelchair at the gate. Good safety tip, make sure any detachable pieces (like, for example, the seat cushion) are connected to the chair. (Can you guess?)

In Denver, we ran into a few snags. Flights were delayed in and out. So we were late in, and had a flight delayed by four hours. The gate changed of course and so we had to get help finding transport to the new gate. (check the whellchair through?  Note to self, never check it through, have it at all flight changes.) So there we are, and my daughter gets food poisoning (why do these things happen to her and not the rest of us??) from juice that I brought her to take her meds. At this point I went to the gate agent and explained: my child with epilepsy is ill, and sleep deprived and may begin having seizures, I need a quiet place to lay her down for a rest until the flight comes. It helped that I was calm, but obviously on the edge. They brought us a cot, blankets, and took the dog out for a walk. WOW! That is the kind of help we needed. Frontier Airlines is my new favorite!

The rest of the trip went without a hitch, except for the seat cushion, which showed up quickly. And for the second leg we had a second row seat, which we made work, but is no good with a dog. I was too stressed to argue. Next time, I will argue. 

 In fact, we had such a great time that we decided to relocate to South Dakota. So if my writing is a little sporadic for the next month, you know why!! 

I'm looking forward to doing a comparison between California and South Dakota as far as living with a child with a disability goes. Everyone says we should not move out of California because of the Lanterman Act, but so far, I'm not convinced. California, land of my birth, is not my favorite place lately. All that glitters in the Golden State is not gold. Besides, life on a farm is great for kids. And, we are going to get a horse. Hippotherapy at last! 

More later. Thanks for following!