So much has happened since the last post that I find myself artificially paralyzed by the changes. I’m not a fan of change. I remember after that surprising shock of a double-lined pregnancy test when I had to comfort my husband (and myself) the only way I could: by promising nothing would change. “We can still go to concerts–we can still have a life; we’ll make it work! Nothing major will change.” That promise shattered into a million pieces the moment she was born, and a million more the next day when she was diagnosed. So I’m grasping for energy in the midst of these changes, but not like a drowning man in water grasps for the surface, that sounds like way too much exertion, more like when my really fat cat tries to catch a small bug. Right in front of him. It’s the laziest thing you’ve ever seen, betraying a total lack of healthy energy or grace.
So funny story, IHSS (In Home Support Services) gave us a denial letter in the mail last week. I had to sign to receive it. The official letter was a joke of course. We had applied for this support almost three years ago back when I didn’t know how I’d go back to work with all of Laelia’s special appointments. And I had to go back to work or we couldn’t pay our bills, but no childcare would take my daughter. (We had little in savings since we had just spent our entire savings on a large, worthless emergency room bill. Long story short: I had chest pain and crappy school insurance. So Grossmont Hospital became the recipient of the money my grandmother had left me.)
After Lali was diagnosed I called over fifty daycares to enroll my daughter, but they all refused. One daycare center allowed us a tour before denying us, saying it was dangerous for Lali to stay around other children when she couldn’t move her arms to protect herself from rough-housing. (False. She has done nothing but thrive around peers.) The last twenty or so calls were kindof an exercise in futility. I felt like I was racking up points in a video game. I would hang up with each one and laugh. I didn’t cry until I’d stopped at fifty, feeling I’d reached my quota. The YMCA stopped giving me referral numbers at that point too. We couldn’t afford the better daycare who took special-needs kids, so we were stuck with smaller, cheaper ones who wouldn’t take a liability… I mean disability… I mean perfect, wonderful child!
So, where was I going with this? Oh yeah, so I applied for IHSS at this point. Copied from a website: “This program will help pay for services provided to you so that you can remain safely in your own home.” (I love how it makes the outside world feel scary.) Perfect! Anyway, I called to make sure they got the paperwork and it was being processed. Three years later they denied me in a letter.
Ha. Ha.
Also the other week I got an impudent call from MediCal (California’s Medicare). The rep started the phone call, in a rude tone, by demanding to come to my apartment. I had no idea who this guy was and couldn’t fathom someone this rude being a friend of mine who I’d invite over. I had to step away from my desk (at work) and ask who this was and what it was regarding. He angrily and impatiently said it was something I’d asked for. Once I realized it was MediCal I said I didn’t remember signing up for this. He rudely interrupted and said, “YOU said you needed this ‘immediately’! I’m looking right at the signature page. ALEXIS WESLEY JANURARY TWO THOUSAND EIGHT.”
“Whoa, wait, is this the emergency help I needed for my three-month old? Years ago?! To help her to go to PT and OT for her arthrogryposis diagnosis because early intervention in these two areas is the only treatment for this incurable condition? And my baby NEEDED this immediately? And you ignored us… and it took weeks longer than necessary to get it? And she lost all this range of motion since we weren’t trained on her stretches that she now gets twice a day? THAT thing I needed immediately? And you’re calling me two and a half years later (your definition of ‘immediately’?) and demanding to see my home? Screw you!” *Click*
That felt nothing but good. And I’m a good girl usually. 
I’m so grateful for wonderful government programs like Laelia’s Head Start school, and even her IEP that helps meet her needs at school. The system redeems itself here. We actually accompanied our little girl to her first day of school last Thursday. She starts officially tomorrow, but Thursday we got to go into her classroom and do an orientation. Her teacher is WONDERFUL! I truly felt this teacher wanted to work with us for Laelia’s benefit, like we were all one big team. Go Laelia! What a special girl Laelia is to warrant such care and attention! This teacher has experience with kids with cerebral palsy so she at least knows that the smartest little minds can have limbs that don’t always cooperate. Plus Laelia and CP kids have walkers, wheelchairs and other durable equipment in common. Her students from last year will also know not to touch the shiny red walker even though it practically begs to be played with.
Laelia’s walker now lives at school. It doesn’t fit in my car’s trunk and is hard to transport so we decided to keep it there. The walker has been hard. A while back when we asked Laelia to walk she moved a hesitant step forward by herself. It wasn’t enough to actually propel herself forward, but we cheered anyway! A couple weeks ago she managed to move forward without the therapist moving her left leg for her. Then for a second… a second and a half I think (say, “one one thousand, two…” and that’s it) she did this bouncy, run thing in her walker! (Technically it’s a gait trainer since it has a seat and holds her body weight.) It happened when we (her PT and I) had stopped paying a lot of attention to her and she saw a ball she wanted. So she kinda jolted her tummy and legs together and bam bam bam her little shoes made a noise I didn’t recognize on the smooth floor. I came home in tears! We had almost cancelled this appointment since I wasn’t feeling well. So glad we didn’t! Of course she hasn’t done anything remotely close to this since. :-/
Um… other changes… Well we just got some paperwork in the mail from Shriners for Laelia’s up-coming lower extremity surgery. It’s becoming more real. Another surgery that will lead to another surgery. But they happen in Philadelphia now. Just our random life I guess. She goes in November 16th.
And when she goes into surgery, she will be flying free of charge! I got an email from Midwest Miracle Miles who arranged complimentary flights to Philadelphia for the surgery! We were ecstatic! They even waived the baggage fees! Oh my gosh! Midwest recently combined with Frontier. So we couldn’t use Midwest Miracle Miles on our last trip to Philly since Midwest didn’t have a hub in our area. But Frontier does! And mere months after the merge between airlines, we are reaping the benefits! Our coordinator, Barbara, is wonderful and has answered my questions even on weekends and Labor Day! I wonder when she gets a vacation or break? We have our flights! So happy!
We also have a date to start paperwork for Laelia’s power chair. It’s in two weeks. It’s a long process so we’ll get it probably around Christmas time, but on the advice of doctors and therapists and other smart people, we need to start this now.
This means we’ve started looking for a new apartment (*groan*) that does not have eight flights of stairs outside and one flight inside. Since our power chair can’t be lifted by mortal man, we need an apartment or house for rent that’s one story and not on a hill (so no steps inside). We’re having a hard time of this for many, various reasons. All of which, when I think about them, steal my life energy! (Nope, not overly dramatic here. ) *Pawing at bug… hard.*
We said goodbye to our babysitter, Megan, on Wednesday. She came over four days a week during the summer so this is another huge change for all of us. Laelia just announced that she’s going to see Megan and Joshua tomorrow and I had to correct her and say, “Actually you’re going to school tomorrow!”
“Megan and Joshua and school!”
“Um, just school honey.”
“Oh with my boyfriend?!” (she includes little boy’s full name)
*sigh* “Yes, school.”
I’ve made something like twenty-five batches of cookies in the last month. Gained five pounds. I’m really good at this now. Um, baking cookies not gaining weight. I can’t bake anything else, but I make the best chocolate chip cookie! I now dye them funny colors for Lali.
I brought four batches of multi-colored cookies to Disneyland yesterday. It was a Wesley family picnic outside of Downtown Disney with Linda and Phong and Grandpa and Grandma. Laelia loved it! It will be her last hurrah before school starts.
Okay I’m getting really tired now and will finish this post later. Laelia’s bag broke and she’s now taking my purse to her first day of school. This will be interesting. I’m putting her name on it and hoping that’s okay. Has anyone sent their kid to school with a purse instead of a bag or back pack before?
In conclusion, lots of changes. Laelia is also turning three. Soon. NOT ALLOWED!
