Wednesday, August 12, 2009


I met with MDCP today about getting William in their program in Texas.  And they gave me the impression they didn't know if he would qualify because he didn't have a medical need, because he doesn't have trach, or cath, or g-tube, he doesn't have a needs for skilled care.  And she repeatedly told me that swallowing disfunction isn't a medical condition, to call her and let her know if he gets a g-tube and gets feeding every day.  

Also, I talked to the pediatrician about williams feeding problem and how he's at the base of the chart, and how he can eat everyday, but that he has bad days, but doesn't have the resources because of his low weight and high tone to make it through a few days of not eating.  And that I'd like to consider getting NG feedings on those days.  She said that I needed to talk to the GI doctor about those concerns.  I just wanted to cry because that mean more conversations and appointments where we aren't taking care/feeding of william, but I called the GI doctor, and he called me back in about an hour (I was so thrilled to hear back so quickly from him), I told him how well William is doing, but also about how bad the bad days can be and that I would like something to help him on those days because I feel those are why he's not thriving better.   And how the therapist are asking for a swallow study since the last time he had one was as a newborn. We also talked about doing NG feedings as a crutch for the bad days so we wouldn't have to do a g-tube.   He agreed and said he was on duty in the hospital next thursday, so that we could have an appointment for him next thursday and then plan to admit him to the hospital after that appointment for NG training and also for testing (swallow study and maybe upper GI).  

Lydia Conrad

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Mother of a "Special" Child

When I was young, I'd often say,
I'd like to be a mom someday
While playing with my baby doll,
I thought that job's not hard at all

I'd have a baby, maybe two,
a girl in pink...a boy in blue
Well I grew up and sure enough,
I'm now a mom and gosh it's tough

The baby that was sent to me,
was born with disabilities
At first I'm frightened through and through,
there's much to learn to care for you

This wasn't in my plans at all,
when I was young and played with dolls
Your mind and body were so weak,
you might not ever walk or speak

So much special care required,
I'm often scared and often tired
As months and years go slowly by,
I smile a lot but sometimes cry

To watch you grow and not complain,
though you endure your share of pain
Oh, how I'd hold you and I'd pray,
that you'd be healed and whole someday

But I knew that was not to be,
not physically or mentally
And so I taught you best I could,
your progress wasn't very good

But then one day I realized,
as I gazed into your loving eyes
That I had learned so much from you,
determination...courage too

A love so unconditional,
it floods my soul and always will
I'm proud to say I gave you birth,
for you're an angel here on earth.

God Choose a mother for a "Special" child

Most women becaome mothers by accident, some by choice, a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjotie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But she has patience?" asked the angel.

"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

And what about her Patron saint? asked the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."