Enough already....

Sitting in the pediatrics unit at the University of Iowa at Beau's bedside, exhausted.  During nap today Beau started having a seizure.  Erin, our babysitter did an amazing job.  She administered his rescue drug when the seizure hit the 3 minute mark, called me, the seizure wasn't stopping so I told her to hang up and call 9-1-1.  I called Andy and he was close to home so he beat the ambulance there and I had to drive from work.  By the time I got to the house the ambulance was gone but Erin was still there.  I felt so badly for her because she was so overwhelmed.  It was her last day for this summer and what a way to end it.  She was pale and shaking and trying to clean up the carpet because Beau had gotten sick.  I assured her she did the right thing and did great, grabbed Beau's blankie and meds and rushed to the ER.  I actually squealed the tires on my mini-van which had to be a funny thing to see.  When I arrived Beau was still seizing and after 30 minutes the seizure finally stopped.  Because he had status epilepticus, they wanted to admit him and they sent him here, to the U of I where all of his specialists are, for observation.  They transported him by ambulance and here we are.  After we arrived he had a rough evening of vomiting and after some medication for the vomiting, he is finally resting.  I'm sorry that this post a little sporadic and poorly written but I'm exhausted and sad.  You hold it together and you hold it together and you hold it together, but eventually you have to break down.  Two ER trips in one week - enough already.  I just keep reminding myself - IT COULD ALWAYS BE WORSE.  Any extra prayers are appreciated because I know He is listening. 

Horrible balance = ER visit

Tonight turned out to be an eventful evening at the Weichers household.  Although in our life, it seems to be par for the course.  Beau's horrible balance causes a whole bunch of falls per day.  I guess I should be grateful that we aren't in the emergency room more often with injuries. Tonight neither Andy or I could catch Beau as he took a tumble.  He was simply walking, got off balance, fell and hit his head on the corner of the wall.  He ended up with a pretty good gash in his head.  A trip to the ER and 3 staples later and we were home. Poor kiddo. 

"If you build it, they will come."

OK, so a cheesy title but hey it's an Iowa thing.  For those who don't know, it's a quote from a movie made here in Iowa; Field of Dreams (Dyersville, IA) with Kevin Costner.  It's an oldie but a goodie.  Anyways.......That saying held true for me after a successful weekend in Minneapolis, Minnesota.  This past weekend I organized an event for the NODCC; a regional gathering for families affected by ACC.  I knew from information given to me by the NODCC, that Iowa didn't have many families affected by ACC.  If they ARE out there, they just haven't connected with the NODCC and we aren't aware of them.  It's a little lonely here in Iowa so I knew I would need to plan the event in a bigger area where more families with ACC were located if I expected to get anyone to attend.  I ended up choosing Minneapolis, MN and what a great choice it was!

I arranged for our event to take place at the Radisson by the Mall of America.  We were able to get a meeting room there which gave us the view of the huge indoor water park at the hotel; the Waterpark of America.  We set the room up with some informational materials and a play area for the kids with some of Beau's toys.  We had a buffet style lunch along with some goodies for dessert. 

The last ingredient for a successful day was the people!  Naturally on the day of our event a main roadway and exit to the hotel was closed, but people still managed to make it through the big city traffic jam.  Including our family, we had a total of 11 families there to share in the fun afternoon.  Everyone was so friendly and easy to talk to.  We were all in the same boat that day.  We were complete strangers with one thing in common; ACC.  OK, make that two things; ACC and a huge love for our children!  We're all in different stages of dealing with the ACC.  Some are more willing to talk about it, others not so much; some have young children with ACC, others have grown children with ACC and so on.  No matter what, I feel like some great strides were made this weekend.  All of the families with the exception of ours, live within miles of each other in Minnesota and they never knew it.  They never realized they had a support system right there!  How rewarding to see people finding out that they have other families that "understand" so close by. 


This is a group shot of all of the families that were in attendance this weekend. What a good looking group!



Topics of conversation included discussion about the IPAD 2 and using it as a teaching tool as well as a communication-like device.  Above is a picture of Max's dad, Greg, with their service dog Zadie with Andy and Beau checking out the IPAD 2 that Max uses. 

One of my favorite memories of the weekend has to be a friendship that I saw occurring between two young gals with ACC, Jessica, 13 years and Madeline, 12 years.  My husband and I both looked at each other late into the day after observing the two girls and both recalled a memory from our trip to the national conference in San Francisco.  There were 2 girls that were in their upper teens, that had met through the conferences of the NODCC and had become such great friends over the years.  They had ACC in common and they had obviously built a strong relationship as a result.  Andy and I both recalled how inseparable they seemed at the conference and how heart warming it was to see them together.  We watched the very same thing happening this weekend and I hope their parents don't mind that I shared this story.  I just know that as a parent of an ACC child I've heard so many stories about how hard it is for these kids to develop and maintain friendships.  I worry so much about Beau not having friends or feeling isolated because he is "different".  Watching these young ladies come out of their shells and have such a fun evening made the whole planning of the event completely worthwhile. 

One of the other topics that came up (once again thanks to Max!) was the service dog.  Max and his dog Zadie were a huge hit this weekend and it was great to see a service dog in action.  We have thought quite often about the benefits of a service/seizure alert dog for Beau.  Heaven knows it might allow me to get better sleep at night!  Below is a great picture of Max, his dad Greg and Zadie.

After our time ended in the conference room, some of the families stuck around and played in the water park.  It was another opportunity to talk, play and laugh.  Beau loves water, so he had a great time.  If you combine that with cute girls, he was in heaven.  I think his face in the picture below says it all.

Beau with his new friends from the NODCC gathering.

The next morning we slept in a little bit, trying to recover from our busy day the day before.  We decided to visit the Como Park Zoo on our way back home.  We met up with the Prusi family at the zoo and enjoyed 2 hours of animal watching and talking about our two young sons with ACC. 



Owen, Maren and Beau at the zoo.

I can't thank the great ACC families of Minnesota enough for welcoming our Iowa family to the state.  In my mind it was a huge success and each year can only get bigger and better.  Next time, you Minnesotans may have to come south and visit the great state of Iowa! 

This thing called ACC has brought all of us together; people who never would have met otherwise and for that I'm grateful.  I've met some wonderful families not only at this event but when we were in California.  Each time we do something like this I feel blessed and re-energized to do more to help those affected by intellectual disabilities. 

I will end this with one of my favorite poems.  It was written by Edna Massionilla and is titled Heaven's Very Special Child.  After meeting such great parents it only seems fitting. The main thing I want to get across by using this poem is that God chooses great people to be the parents of special needs children.  We were chosen for a reason and are so lucky.

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.
 
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
 
He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'llknown as handicapped.
 
So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.
 
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.
 
And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.
 
 
by Edna Massionilla
December 1981
The Optomist- newsletter for PROUD
Parents Regional Outreach for Understanding Down's Inc.