Ups and Downs

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! :)

2 Responses to “Ups and Downs”

  1. Linda Record says:

    “Screw you!” *Click*” Yeah! You go girl. Dumb guy sure deserved that.

    “Of course she hasn’t done anything remotely close to this since. :-/” But you KNOW she will.

    Sorry to hear the energy vampires are stalking. Hope you find the right garlic to put them at bay.

  2. Laura says:

    I’m with whoever wrote comment #1. You GO girl!!!!!!! You tell them!!! Trust me, I’ve had similar feelings (still do!). There are some government programs that are utterly ridiculous how unhelpful they are. However, I cannot deny that IHSS is a ginormously crucial element contributing to my current independent living situation. There is no way I could afford rent AND tuition AND caregivers. But they can definitely be turds :/
    Congrats on school seeming to be starting out so well!!!! She’ll have a blast, I’m sure. :D
    That’s excellent that you are getting her her first power chair. She will blossom so much with that new independence. I can guarantee it. Not only will she become an excellent driver because she will start so young, she will LOVE being able to get around so easy. I know I do!!
    As for having to look for a new apartment with no steps, and Lali’s upcoming surgery, I know those seem like ginormous details now, but just remember that in a year or 2 at most, those will be old news, and just tiny threads in a beautiful fabric that’s constantly being woven :) Don’t lose sight of the big picture. :)
    Oh, and sleep is good too. ;)

    PS – If you need an extra dose of encouragement and ispiration, google Steve Wampler. He has CP, but that’s irrelevant (in more than one way) to what he just accomplished a few days ago :)

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