Hello!  I am sorry for not writing sooner; it's just things have been crazy around here, especially with the holidays, but thank God things are starting to calm down somewhat.  Also, Micheal's health has stabilized, much to our relief.  (Micheal has lissencephaly, a rare brain disorder that's left him permanently and severely disabled.  He requires twenty-four hour skilled care.)

Micheal continues to beat the odds; yet caring for him isn't easy.  There are days where I wish he'd die, while on others I am praying that God allows him to live another day because we love him so much.  It's a catch-22 situation because he doesn't have a good life.  He deserves far better than what he's been given in life.

Micheal had another round of pneumonia back in November; and the swine flu scare has us all on edge.  Thank God Micheal, Flower, or Hughie didn't get it, but I have been on their toes to keep their hands sanitized/cleaned (Hughie and Flower) and to make sure that if they don't feel well, to tell me or their father immediately.

So far we've escaped the flu bug; the only problem we've had is when Micheal's feeding tube got blocked and also when he had his pneumonia; other than that, his health has been extraordinary (such as it is).  No major worries or hospitalizations, which has been a huge answer to prayer.

We finally got the help we've been searching for:  a neighbor who is a retired RN comes over to care for Micheal while I tend to the other two children, who have been feeling ignored, especially our daughter, who still really doesn't understand why her big brother is the way he is.  Hughie has also been feeling ignored; this has been evident in his falling grades and "acting out" at school.

I feel bad for them, but I feel for Micheal the most.  He doesn't realize the pain/strife his condition has caused us.  It isn't easy to care for a child who doesn't know what is going on around him most of the time, or a child who needs help every hour of his life.  This is when I hate the damn lissencephaly he was born with because if he didn't have that, he'd be a wonderful little boy who could run around, laugh, sing, count, read, and do so much more.

I still grieve over the Micheal that could have been as well as the Micheal we take care of.  We have to make sure he's nourished, comfortable (not too hot or cold, etc.), and not running fevers or having difficulty in breathing (the oxygen helps with that most of the time).  When he gets sick, his body shuts down; he can't tell us when he is hurting or feeling poorly; we have to rely on visual or body cues.  It's very frustrating, not to mention, maddening.

We pray to God every day to give us one more day and for Micheal to stay well.  That doesn't always happen of course, but we wonder why one little boy has to suffer so needlessly.  It doesn't seem fair that he has to endure so much pain while the rest of us can do whatever we want at will.

I am starting a network on the Internet for other parents who are going through the same thing (or similar situations); that way, we can bounce off one another whenever we are having a bad day, and lend each other a listening ear when we need support or guidance.  We also have to remind each other that we aren't alone in raising our special children; there are many of "us" who are out there.

I also work tirelessly with the Lissencephaly Foundation, learning all I can about this terrible condition and giving loving encouragement to other parents as they face this. 

It's helped me in ways that I can't even begin to imagine, and it's also helped Micheal, because I can still pray for a treatment or a cure for lissencephaly, so other children don't have to go through what we do on a daily basis.

Now that we have our neighbor caring for Micheal, Robert and myself can concentrate on caring for our other children; we can go to their sporting games, concerts, or doctor's appointments, and we can be there for them when Hughie or Flower are having a bad day.  We can see what's going on in their lives instead of focusing entirely on Micheal's needs. 

It's been wonderful seeing the two of them opening up a part of their world with us; it's something we've missed for far too long because of Micheal.

Well, Micheal is cooing, so I'd best see what he needs.  I will write in here again; until then, forgive the long lapse in writing.  Now that we have a nurse here a good part of the day, maybe I can get more writing in.  Lord, I hope so; I would love to write a book about my son, so to give other families hope in the midst of their struggles against lissencephaly or any other brain diseases that severely curtail their children's lives. 

Take care, and may God bless you; keep those prayers coming because they are certainly helping!

~Jayne Earhardt.  :)

*to be continued.*