Archives for May 2010

Much needed reminders

4 May by Mommy

Today, I received quite a few reminders that as bad as I feel that things are going right now, that it could always be much worse.

I found myself worried about a friend whom I have known for about 10 years, a wonderful mom to 3 kids, who lost her home and all their possessions due to the floods in Tennessee.  The pictures are heartbreaking.  They are all safe, thank goodness.   But now they have to break the news to their children that all their items are gone.  Like that, their lives are changed.  They have to start over.

I found myself worried about Bertrand quite a bit during the day because he just was not himself.  His mom, my person, is such a strong and amazing mom and friend, and I know that these new injections they started him on to try and help control his seizures are so tough on all of them.

I found myself worried about Hannah’s birth friend, Charli, who is going to have half of her brain removed in a bit over 3 weeks to try and control her seizures and spasms.  Her mom, who is going through a difficult time as it is, is also such an amazingly strong woman whom I admire.

I find myself worried about Hannah’s local therapy friend, Cooper, who was diagnosed with a severe mitochondrial disorder and who just received a gut transplant last week after waiting on the list for a year.  Now beings the long road to recovery.

I found myself worried about little Olivia, a Gaucher type 2 little girl, who captured my heart with her smile.  A smile that was almost lost to the world due to the progressive nature of this disease just weeks ago.    But I saw a picture of her today, and to say her smile melted my heart is an understatement.

I have so much to be grateful for.   I really do.  And I am grateful.

~ Filed Under: Hannah's Fight

S.O.S.

3 May by Mommy

Stressed, overwhelmed, and sad…S.O.S.   That is how I am feeling right now.

We move in one month to Las Vegas (which I am really looking forward to).  However, Daddy still does not have a job after sending out over 100 resumes (with only 2 phone interviews, one in-person interview) in three months, complications with Abby’s encopresis, the “on hold” status of our life while we pack and prepare to move, the intense stress of the thought of having to pay rent on a house in Vegas while trying/hoping/praying that our house here in Texas sells (mortgage/bills plus knowing that it has to be repainted inside, powerwashed outside, plus new carpeting and possibly half of a new roof).  Yeah, money is a huge stressor in our life right now.  Between his unemployment and my part-time job (which I wish would allow full-time status), it definitely is not enough for our family of five to live on, especially with us still in the “out of pocket” portion of our insurance before we max out.

But I think the worst part of all of it, and the part that is bringing me real down today, is Hannah.  Reality is that I can see this disease is taking more of a toll on her, and it is killing me.  I see her eyes starting to get more fixed/crossed separately, and I know one day the strabismus (fixed, inoperable crossed-eyes) is just looming over her.   For now, she is able to get out of it, but it is becoming more and more noticeable.

Looking at her overall lack of progress over the past 9 months, it is strikingly apparent.  She is still a 9-month-old baby in a 21-month-old toddler body.   There are very few “yes” activities I can add to her 12-month-old list of milestones that were not there before.   Just even glancing at the 2-year-old milestone list,  there is not ONE “yes” I can add, and worse yet, she hits every single item on the developmental watch list on that page.

There are days, like today, I wish her communication was better.  I just wish she would even recognize her name when we call her.   With the exception of just a few commands, there is not much communication she understands.

Then there is her ear tube surgery this Friday.  The easiest childhood surgery there is.  Abigail has done it three times.  Yet, I am completely stressed out about it.  This anesthesia situation has me on pins and needles.  We already got the call from the hospital to preregister her since we are anticipating spending the night there for observation.  Simplest surgery — yet, I am completely stressed about it — just does not make sense to me!

Now I know she is going “at her own pace.”   It is just that it has been so long since we saw any real progress.   It just sometimes makes me sad when I get that realization at how “significantly disabled” she really is.  There is no treatment to help her, no cure that is near on the horizon.  No one saying “hey, we are really close to something.”

But I keep reminding myself how fortunately we are with her.  She is painfree.  She is on very minimal medications.  With the exception of her orthotics and gait trainer, she has no medical assisting devices to support her life.   She is happy where she is at.  She is smiling.  She loves her toys, the same toys she has been playing with for a year.   She loves her brother and sister interacting with her.  She loves to be read books.  She gets the biggest smile on her face when she gets picked up.

Today is just one of those days, I guess…

~ Filed Under: Hannah's Fight, Pics and Videos
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