Sept. 29, 2008, Nashville, TN, 5:47 a.m.~

Dear Journal~

Kaylee Beausoleil here. 

You might not remember me; let me fill you in.

I am the mother to Kaysa, who has Niemann-Pick disease.  In addition to Kaysa (she's my youngest; she will be three in January), I also have Kenny and Korinne, who are three and a half and five and a half.

Niemann-Pick disease (NPD) is a disorder that affects metabolism.  Kaysa's body doesn't have the ability to break down fats that accumulate in her system; this causes a lot of health problems for her.  She is frequently sick, and she's been in and out of the hospital for one thing or another.

NPD is also fatal, particularly the type she has, Type C.  Doctors don't think she'll live to reach the age of six.  It's that serious.

Having a child like Kaysa has been financially and emotionally draining, not just on me, but her older sister and brother.  They don't understand why their baby sister has to go to the doctor's so much or why she has to go into the hospital when she gets sick.  They get angry with her because they wish she could play with them; they say she's no fun, and it breaks my heart, each and every time.

We did live in Baton Rouge, Louisiana; we've lived their all our lives; but earlier last month, a hurricane chased us out, damaged our home.  We've had to pull up our stakes, start all over, in a new city; and it's daunting trying to fit in.  I'm not used to the cooler temperatures, and the people here talk funny.  I don't understand them.

I've been trying to find work, or find quality daycare that will take in a child with special health care needs; so far, nothing.  It's been very discouraging on both fronts.  Nobody is hiring it seems, and if they are it's only temporary when I am seeking permanent employment, so I can provide for my babies.

As for daycare, the cost to put my children there is astronomically expensive; there's no way I could afford to put my youngest one there.  As a result, I've had to stay at home, wondering where our next meal is going to come from, wondering how I'm going to put food on the table.

Right now we're staying at a church-based shelter that doesn't ask for rent; all they asked for was proof of citizenship, residency, or identification; and we've been here now going on three weeks.  It's okay, but it's not home; it's not the same.

At least we have a roof over our heads; for that I should be grateful.

All in all, it's still difficult. I think of the children, what they need, and how I need to provide for them, getting nowhere, and it's enough to break my spirit.  I am trying like hell to rely on God, but when I don't see things coming into fruition regarding my desperate situation, it's no wonder I feel like giving up on Him time and time again!

So far, Kaysa's managed to stay out of the hospital since her last episode, which has been a huge blessing; however, I never know when she is giong to get sick, or, heaven forbid, end up in the hospital again.  I just hope I can find a reputable children's hospital that can treat Kaysa's medical issues and not give me the runaround!

Just keep me, Kaylee Beausoleil, and my family in your prayers; I could really use a miracle about now (no, make that miracles!).  Thank you for listening, allowing me to get this off my chest!

Sincerely, your friend, Kaylee Elizabeth Beausoleil. :(

P.S.:  Oh, and another thing:  Raymond and I are no longer together.  We've separated; he couldn't deal with Kaysa's special needs any longer, so he fled.  Another reason why I've been having such a hard time.  It's been a devastating blow to the kids, and especially to myself. 

~Kaylee. :(