Laelia Sky Wesley

Okay, so Ms. Dawn from Early Start comes over once a week, and sometimes she’ll leave a toy for Laelia. This week Laelie got to borrow a toy called “Little Smart First Words.” I had wedged it in her lap, but she didn’t seem that interested. Then Charley comes home from work and had just walked in the door when his daughter starts to wiggle in excitement. I picked up the camera immediately to capture baby’s joyous *electronic* exclamations!

This is totally America’s Funniest Video material!

It’s weird that I keep going even though nothing seems right in my gut. These last few days have been really hard on us. But I’m going to take my break and eat my self-prescribed chocolate. Then next week I’m going to let Mother’s Day on the 11th and the anniversary of my mother’s death on the 15th hit me as hard as it wants while I hold my daughter close. After that I’m back in business. That’s the plan.

On my way to work this morning I was crying because it was raining and “The Reason” by Hoobastank was playing on the radio. The lyrics really got to me. Although I didn’t hurt my girlfriend’s feelings like in the song, my womb did hurt my baby, and that is something I’ll have to live with everyday. And there’s so many things about myself that I want to change. So this song made me cry because in my head I was singing it to my baby.

“i’m not a perfect person. there are many things i wish i didnt do
but i continue learning. i never meant to do those things to you.
and so i have to say before i go, that i just want you to know

i’ve found a reason for me, to change who i used to be
a reason to start over new, and the reason is you

i’m sorry that i hurt you, its something i must live with everyday
and all the pain i put you through, i wish that i could take it all away
and be the one who catches all your tears, thats why i need you to hear

i’ve found a reason for me, to change who i used to be
a reason to start over new, and the reason is you
i’ve found a reason to show a side of me you didnt know
a reason for all that i do, and the reason is you”

Screwed. We’re screwed. Totally screwed. After seven months of navigating the mess that is our system and drowning in denials, we finally sunk. Our child falls between the cracks. No organization or government assistance can help us. Officially.

What happened was that I decided to reapply to everything I had already been denied for or hadn’t heard back from. I was starting to get my second round of denials when IHO contacted me. I had already filled out one application for them and never heard back so I filled out another and included a faq sheet on AMC, a personal letter, Laelia’s picture as well as the filled-out application complete with footnotes. Well I can now announce that our mystery has been solved. IHO was the answer. It stands for In Home Operations. According to IHO there are two ways for a child like mine to get a MediCal waiver: Regional Center and IHO, the later requiring a six months to a year waiting list to even start the process (something we could have done seven months ago if we had known anything about it). We would have gotten the Home Community Based Model Waiver. That’s what the other little boy with arthrogryposis got years ago as we finally discovered. The wait to get the waiver would have been really long. There would have also been a wait to get MediCal after we had the waiver. But then after all that waiting we would have used the waiver to get MediCal and used MediCal to get into Together We Grow and used Together We Grow as an anchor between us and sanity by relieving us of this burden of caring for a disabled child and doing her painful stretches.

Only we can’t. In the last few years MediCal changed and Together We Grow changed as a result. I was told that nurses aren’t required for Laelie’s stretches or splint/brace care since anyone can be trained to do that. But anyone can be trained to use a feeding tube or give oral medications too! But unless Laelia is on consistent medications or needs to be fed a special way then there is ‘no room for her in the inn’ so to speak. And don’t think any other daycare will touch her. Too many splint changes and stretches and orthotic shoe care for your typical daycare. In other words, too special for daycare, not special enough for special daycare.

A lady came to my home to explain all this in person and offered me counseling to cope with it in the same breath. I took the news about as well as I first took Laelie’s diagnosis–stoic then devastated.

I’m still starting the process of applying for IHO’s waiver to see if I can get it next year and maybe use it for something else. I am officially at the bottom of the waiting list. I’m also going to apply for Together We Grow. The lady that came over to explain how screwed we are said that what I was trying to do was “ground breaking.” That means I will need to fight for this hard and not take “no” for an answer. My daughter does not fit into anyone’s box. Arhtrogyrposis isn’t even on anyone’s radar. So everything I do, I do tooth and nail. 

But what no one realizes is that I have zero energy to deal with this. Dealing with all this crap has been ten times worse than dealing with her disability. Why complicate someone’s grief with all this? And in the end it was all a waste? That sucks!

Laelia started to outgrow her infant car seat so we bought her a new, bigger one that arrived in a big box. Charley and I wordlessly exchanged a look and then raced to crawl inside it. It was like being a kid again, only this time our legs dangled out. It was a safe feeling. We camped out in it in the middle of the living room driving the cats crazy. It’s funny how the simple pleasure of crawling in a big cardboard box can make a day better.

I’m taking the rest of the week off. Not from work but from dealing with all this. I don’t have my OT auth for this week and today she missed her appointment because of that. I’m letting her therapist deal with it. She also still doesn’t have her AFOs and I have no idea where we are at in that process. But I’m not dealing with it this week. I have no earthly idea what we’re going to do now. But I have to take a step back and grieve a new loss–the loss of easiness. The loss of smooth sailing. The loss of simplicity in raising our daughter with a consistent daycare and government assistance that is just an application away. The loss of the normalacy I believed I could achieve with Together We Grow caring for my unique daughter while I was building my career. The loss that comes when you reach out for something just out of reach and come up with empty air in your fingers.

Then I can fight again.  

I’ve sat down several times to blog about this bad week. Every day this week I have sat down to blog, stared blankly at the screen, cried, got up to walk around, sat back down and eventually just abandoned the whole endeavor. So I had an epiphany today (Thursday): I’m just not gonna blog about it–not the bad stuff anyway. But the long and short of it is that I had some health problems for the past two and a half weeks (girlie problem), I had major hassles with several organizations and baby decided she would start screaming at night because she hates the world… or is teething…or has an ear infection… or is developing her mutant ability to break the sound barrier. This budding super power caused our not-so-nice neighbor to scream at little Laelie from his apartment window to her nursery window, which made her even more upset and sent my mood from distraught to murderous. Let’s just say it’s a good thing I didn’t see his face or which apartment he came from. The coward doesn’t realize I have a sniper in the family. No seriously, I do.

As for organizations, this week we got denied by several more. Genetically Handicapped Persons Programed denied us straight off. Our particular form of arthrogryposis hasn’t been linked to a gene even thought the distal form has. Some other program I applied for sent me a brochure for Genetically Handicapped Persons Program instead of helping me after just getting denied by them. (See the “Ask your mother” blog to see what I think of that.) Let’s see who else this week… we were denied for Healthy Families who said they would try to look into stuff but didn’t call back and also CCS (California Children Services) who called to say, “We can help you!” And right when I started to get excited they continued to say they could help with something we didn’t ask for help with, but not with their program that could get us into Together We Grow. They would, since we were denied by MediCal, put Laelia in their therapy program which effectively takes her out of the care of her current therapists. I don’t think that’s the best option when we have the best therapists. It sounds like they outsource to one of our therapists anyway when they aren’t competent in one area or another. So… you know… Apparently they didn’t even read the letter I sent them that they are suppose to be responding to, and, to further prove their literary deficiencies, they mispronounced my daughter’s name several times. Usually this doesn’t bother me since I picked the most beautiful, least pronounceable name I could think of, but I got ticked off when I was informed that parents don’t have much say in their own child’s care through this program, but we do have the option to “complain to a supervisor at any time.” And, when I called my OT, “Dr. Jill,” which I call her occasionally, the lady added, “Just for your information, it’s not Dr. Jill so let’s just get that clear, she is an occ-u-pa-tional ther-a-pist, not a doctor.” I almost responded, “Sorry I don’t defer to a person who fails at basic reading comprehension! It’s Lae-li-a. If you don’t know how to pronounce something, it helps to sound it out.” It’s not like I don’t appreciate the help, but I have to do what’s best for my daughter. And I want the final say in all things pertaining to her care. Period.

So that racks up the denial list to:

*Genetic Handicapped Persons Program

*Our own insurance

*MediCal

*CCS (they have another program that could help that we got denied for)

*SSI (twice-once in person, once over the phone)

*Healthy Families

*Regional Center’s MediCal waiver (twice)

*iHSS

Uproarious I know. I took the three denials I got this week pretty hard. But since this is my nonblog, I’ll skip the details.

I also talked with another mom who’s daughter has arthrogryposis very similar to mine. She’s unmarried (and is astute enough to stay that way to get the support for her child) so her advice didn’t quite match my situation, but it encouraged me to keep going.

Kristin, Emma’s mom, also kept tabs on me this week. It was nice to have the support. It’s so cool that several different people I’ve never met are looking into new avenues for Laelia to get MediCal or help of some sort. No matter how discouraging it is to have a child who falls between the cracks of the system, I’ve come to realize that moms of disabled kids understand what I’m going through even though our situations are so different. And they get mad with me. Yeay for group outrage!

Okay so this became more of a blog than a nonblog. But whatever you call it, it fulfilled its purpose because I feel better. Thanks again Bolt and Fjord for this website.