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Showing posts from February, 2015

The Waiting ~ WAGR Wednesday

There is a lot of "waiting" that comes along with having a rare disease.  First, my husband and I waited at the hospital for the doctors to figure out where to refer us when my daughter was three days old.  They drew blood and sent it off to Texas for a special FISH analysis and we waited for weeks for the confirmation that she had WAGR Syndrome.

We waited in the ERs and Urgent Cares for doctors to come in and ask the same ridiculous questions which had nothing to do with our visit. 
Was she full term?Any complications during pregnancy?Was it a  normal delivery?This was not necessary questioning when we knew it was pneumonia or a UTI, but, as the "3 Ring Circus" that drew observers from all over the hospital, apparently we needed to be patient and wait for them to satisfy their curiosity.

We waited while our daughter would be under sedation for eye exams and ultra sounds; we waited through eye surgeries, chemotherapy appointments, surgeries, and recoveries.  We wai…

New Angels, New Feelings ~ WAGR Wednesday

What Did I Do to Deserve This? ~ Guest Blogging Day

Near the cross of Jesus stood his mother... John 19:25 NIV

It's amazing to study the life of Jesus and to see how he fulfills the Law and becomes our High Priest who has walked the earth and knows what we go through while living here.  But, lately, I've had to come to terms with another piece that God, in all His wisdom, included in the Gospel.
The fact that Jesus's mother watched him die. Being parents of children with special needs, many times, we have to face the fact that we could out live our children.  Yes, all parents have to face this; but as parents of children born with certain genetic conditions or medical conditions; we have to live with the fact that our children are more medically fragile. 

Continue reading on Comfort in the Midst of Chaos...

Not Even Nakedness... Guest Blogging Day

Who shall separate us from the love of Christ?  Shall trouble or hardship or persecution or famine or nakedness or danger or sword?  Romans 8:35 NIV
The last time MOST of us want to see a picture of ourselves naked is when we're around the age of those two babies above.  There are many of us who don't even like wearing a swimming suit in public, and who can't stand going to the doctor to be poked and prodded while wearing a thin cotton (or paper) gown.  I personally find that some of my most terrifying nightmares are the ones where SOMEHOW I wind up naked.  (Don't leave me hanging...please, tell me I'm not alone.)
So, one of the things I fear most for my daughter is her loss of modesty or dignity.  She has honestly had to be naked in front of her doctors for a decade.  We have a hard time teaching her that there are now times when it is NOT OKAY to just whip your shirt up, or walk out of the bathroom with your pants down to your ankles.  As adorable as she may b…

I Would Need the Nails...

"...fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God."Hebrews 12:2 NIV
I'm having one of those of those stretches of days.  The days that many people believe I don't have because of how happy I usually am.  But I most certainly do have those days.  I have the days that I want to flee from my responsibilities as a mom of a child with special needs; the days when I know that I am NOT strong enough for this job and that God has made an undeniable mistake in giving me this responsibility. 
If I waiver and grow weak from a battle for supplemental insurance...If I am too tired to even want to log in to ANOTHER "my chart" account to try and track down MORE appointment notes for my daughter's medical history...If I can't think of something I want to do LESS than send another e-mail to the state...If the smell of m…