Archives for January 2009

I actually spent the better part of today forgetting that Hannah was sick with this horrible disease.  We had a fun “family” day and went to a pizza place that we like that has carnival games with it.  We used to go there about once a month or so.  We did the same pizza buffet, sat in the same seating room that had a huge wall-size screen movie (Blue Hawaii – Elvis), and we played in the same carnival area and games.  Hannah slept in her stroller, and the kids, Daddy, and I took our normal seats at a table we often sit at.

After that, we had a fun shopping trip at our favorite store, Target.  Little Girl A was so excited because she got three headbands and ANOTHER purse (all for $7, gotta love clearances!).  Let me tell ya, she has more purses than I do!  She is SUCH the girly girl.  Big Boy E got another Sudoku book in the dollar area.   He just loves puzzles.

We left at 10:30 AM and came home around 3:00 PM.  With the exception of the ride home at the end when Daddy and I did talk about it, I don’t think I spent more than 20 minutes thinking about Hannah’s situation during that time.  I just really enjoyed having all my family with me and having such a great day.  Back to the old ways, you know, Big Boy E and Little Girl A trying to get each other in trouble one minute and then loving each other the next.

Even tonight before and during dinner, I find myself doing an “oh yeah that’s right” when something regarding Hannah’s situation pops into my head.  Of course, after the kids got into bed, the first thing I do is jump onto the computer to do some more research (check out my Gaucher’s subpages).  

When I slow down and have time to think, I do find myself gravitating towards this.  But my family, especially Big Boy E and Little Girl A, are a welcome distraction, and I can’t wait to have more family time together.   Perhaps this does get easier over time, especially now that we know what we are dealing with, knowing there is more time than we thought, and especially since she doesn’t have any symptoms (other than her huge spleen and liver that she has had since birth so we are used to that).  I just see her smiling and laughing face and her hitting her developmental milestones (granted, slower than most, but she is still hitting them – better late than never!).

Or maybe this is going to be an “up and down” progress instead of “time heals the wound” process.  Damn, I feel like I’m in unchartered territory here.  It is almost like an “ignorance is bliss” feeling.  If I don’t think about it, maybe it isn’t real.  But I do know that once we start in with the specialists, the treatments, the research, and the other therapies, it will all be smack dab back in my face.

Thank God for my kids and my husband.  They truly do make me happy.

I know that many of you don’t know how to respond to our news, which is probably why we haven’t heard from quite a few of you since we finally did get a diagnosis.

Yes, we received heartbreaking news regarding Hannah. Yes, our lives have now been totally turned upside down with this diagnosis. We have gone from a boring stable family to a family that has to consult with a lawyer in order not to possibly lose our house and assets because of the cost of her medical treatments and now trying to figure out how we will ever save for the kids’ colleges. We have gone from a family who can do things “on the whim” to a family who has to schedule their lives and activities around Hannah’s treatments and doctor’s appointments. We have gone from reading the latest in People Magazine to reading the latest on drug research and clinical trials.

But you know what? We have a lot of hope. We are given a difficult circumstance that none of us has experienced. We have hope that it is type 1, and we will deal with whatever physical symptoms and medical treatments she will need. If she does have type 3, then we will do whatever we can, talk to whoever we can, and pound on every door we can to find a treatment and cure…we have 15 to 20 years, a lot can happen in that time.

Hannah has brought an amazing amount of joy into our lives. I never knew what was missing, but it was her. The way she smiles and laughs, the way she just charms everyone she meets, and the way she gets a huge grin every time her brother and sister come near her. We will fight for her, as a family.

You may feel that saying “I’m sorry” may not be enough or just not know what to say. The only thing I need from you is to know that you are still here for us. Just a simple “I’m here for you” or “I’ll be here if you need me” will give us the strength to fight, as it means you are fighting with us in spirit.

We do love you, and we know you care about us. Don’t worry about “what to say” to us. Just say whatever you feel — even if it is just to talk about what is going in the world, your lives, or whatever.

Yeah, we got DENIED immediately for supplemental security income (SSI) for disability assistance (Gaucher’s Disease is considered a “disability” as it lasts longer than 12 months and requires continual treatment). Once she asked my husband’s income, well, that was pretty much the end of the interview. The thing that really bothers me is that we aren’t wealthy people, we are middle class. Since I got put on bedrest in early June last year, we have been supplementing his income with our savings. With Hannah’s situation, I haven’t been able to go back to work. Now knowing that she is going to have IV treatments every two weeks, developmental therapy every other week, occupational therapy every week, not to mention a whole multitude of doctors appointments, I don’t know how I can go back to a “day job” since all of this happens during the week, especially with 2 other kids. I thought about going back to medical transcriptioning (what I was doing before I got put on bedrest) — but work was so scarce even before I left, I’m not even sure that is an option now since my hours would have to be so sporatic.

They don’t care that a substantial portion of our income will now be going to go to medical treatments even after the insurance company pays what they said they will! Even if my husband earned $1000 less a month, we would only qualify for $84 a month. Basically, unless you are living just above the poverty level with our family of five, you don’t qualify — regardless of your needs!

I asked if we could appeal their decision. She said “of course,” but it would continue to be denied because of our income. If we HAD the income they think we have, then we wouldn’t need the assistance!

What pisses me off, and I am pissed with “the system,” is that why do I have to pay for something that I can’t benefit from when I truly need the help? Seriously, that is just not right.

I’m going to start working on a video to help increase awareness of Hannah’s condition, and I’m really stuck and have no idea what songs would be good for a montage of pictures and information. I want a song that is heartwarming but uplifting as well.

Any suggestions out there?