Tuesday, April 27, 2010

Prayer Quilts

Picked up prayer quilts from a church prayer quilt ministry, the kids love them. Micah picked trucks, William picked race cars, and Tommy picked an I-Spy Quilt.

The quilts have strings on them you can say a prayer and tie a knot in to have prayers tied into the quilt just for them, so they can wrap themselves in prayers.

Thursday, April 22, 2010

Micah Conrad Heart Update

I've scheduled appointments with the heart surgeons (2) and another cardiologist for consults:

We meet with the 2nd cardiologist Friday Dr Fryer

We meet with Dr Eric Mendeloff the Surgeon at Medical City on Friday April 30th

We meet with Dr Vincent Tam Surgeon with Cooks Children's in FW on May 12th

Found out Micah with need Heart Surgery

Micah (25 mo) was diagnosed with an ASD Atrial Septal Defect (June 2009 at 15 months) (hole between the top two chambers of the heart).  Congenital defect.  We were told the protocol is to wait for a year to check it again and see if it gets smaller.  So we waited almost a year, but went for follow up early, due to my job loss.  Well size hasn't changed it's a significant defect, and there's no urgency to repair it, but it will need repair (protocol online was before school starts at 5), and recommendation is sooner rather than later due to insurance situation.    Basically with his defect he would have significant reduction in his life expectancy, and would get to a point as a teen where he would have trouble doing things he used to.  His life expectancy for his generation is about 84 doc said, and doc's projection with defect untreated would be about 50.  Defect was clearly visible on the Eco and measured about 8.4 mm or .84 cm in size.  The heart is 1.5 times the size of a 2 year old fist, about the size of a small apple? little larger than a cutie orange. 

Wednesday, April 14, 2010

Is he all there?

They've never been in this world of mine. They are trying to at some level grasp the impact of this to my life, not in their defense, but they are trying to understand something unfathomably to them. So much of the intelligence of a child is based on what motor skills they can do at what age, but I can see the intelligence waiting inside to get out, without a way to express its self because he tries so hard to tell the muscles to do exactly what you and I tell our muscles to do, only they just don't do it. It's not because the brain is broken, but something in the middle. But like You said we are all broken. A glimmer of the eye can express a 1000 words with one look, but you have to be looking and listening to hear it. I hear it everyday, and I try to explain to those that ask exactly what I see, so maybe they will stop and see it. Maybe with their own children who are not as broken they will stop and see it too.

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."