Tag Archive | Special needs

Polotics, Family, Helping,what are your thoughts?

As I was surfing around the web this weekend, I ended up reading about the Republican presidential candidate Rick Santorum.
Now do not worry, this is not my attempt at a political discussion, as I hate them with all my heart, mind and soul. 😉  Poor hubby, he so loves to talk about politics.

, U.S. Senator from Pennsylvania.

Image via Wikipedia

The story I read was about how he had taken some time off to be with his wife and three-year-old daughter.  His daughter Isabella was hospitalized with double pneumonia on Saturday.
How scary!    My guess is that this is not their first experience with medical emergencies.  Little Isabella was born with a chromosomal abnormality called Trisomy 18 and along with that diagnosis is a life of medical issues.
My prayers went out for this family as I read about their weekend.
I know firsthand what it feels like to hand your small child over to doctors and just pray that they know what they are doing!  Praying that the doctors can just “fix” your baby so that life can get back to normal.
What happens when the doctors cannot “fix” the problem?
My little Boogie Bear (the name I call my youngest child) was born with a grade 4 bleed on his brain.  He spent 3 weeks in the NICU and went home.  We were told that he would NEVER walk or talk.  So when he walked at 18 months old and was already babbling we knew we dodged a HUGE bullet.

cuttie, 2 year old,

too cute

However, when he was just 2 years old our lives changed drastically.  Boogie Bear had a seizure that lasted 3 hours and 45 minutes.  I am not exaggerating; he was taken by Care Flight helicopter to the nearest children’s hospital an hour from our home.  By the time my husband and I got to the hospital, Boogie Bear was on Life support.
As a mom, I was looking for reasons, what caused this?  The last thing on my mind was that fact that he had brain damage from the bleed at birth.  By this age he was talking, playing on the playground, running, he had met all the milestones that “they” told us he would never do.  So he was not a special needs child, he was “normal”. Right?
Well that day in May, proved that Boogie Bear had a long fight in front of him, and for his family for that matter.
That was not the last time that Boogie Bear would go into status epilepticus!  It turned out to be a monthly occurrence for the next 6 years.  Care Flight helicopters, ambulances, neurologist, emergency rooms, and a couple of more times on life support became his and our “normal”.  Boogie Bear’s longest seizure was 4 hours and 20 minutes.
life flight

helicopter that helped boogie bear the very first time

So what caused this?  We were told that it was due to the brain damage cause by the brain bleed he had at birth.  What, I just thought the doctors were crazy. He has been fine for 2 years.  Why now?    The doctors shared that the brain has a large growth spurt at two-year old and that the scar tissue from the brain damage caused by the bleed is what most likely triggered the events on that sad day in May.
So now we have a child with special needs, our lives and the life of Boogie Bear was and is far from “normal”.  Since that day in may boogie bear has been diagnosed with… Cerebral Palsy, Global Developmental Delay, Peri-ventricular Leukomalacia, irretractibal epilepsy with frequent status epilepticus, and a few more diagnosis that I will share at a different time.

So, that is why I stopped and prayed for the Santorum family.  I know many people prayed for us and I try to return the favor for other families who live with a special needs family member.  It can sometimes be a lonely place.
Let me challenge you…Pray for or encourage, or find ways that can help a family with special needs.  You will never know (unless you are one) how tiresome and emotional it is to be “on guard” for the medical needs of a special needs child 24/7.
If you are a “special needs family”, share here some simple, practical examples that would be helpful or encouraging to your family or your child.  Happy sharing, please only share in a helpful manner, this is not a forum for complaining or pointing out what people do wrong, thanks.