Monday, May 20, 2013

Welcome to Holland

I did not write the following piece.  A friend of mine, also a special needs mom, sent it to me awhile back.  I cried my eyes out the first few times I read it and sometimes still do.  It so beautifully puts into words the thoughts and emotions that I've gone through this past year and it reminds me that I'm not alone.  Here it is:

"Welcome to Holland" 
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this: When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. - Emily Pearl Kingsley

 I sometimes don't know whether I should keep hoping for Italy, but like I've said before, I know we'll be where God wants us to be and who He wants us to be

Thursday, May 16, 2013

The Latest and Greatest and not so Greatest

Levi had an appointment with Dr Q last Friday.  It went well, overall.  There haven't been any changes to his EEG, which is on the good side.  Dr Q feels like Levi is progressing better than 90 - 95 percent of most children with his condition.  This was very encouraging to hear.  And then came the "but".  Why is there always a "but"?  Until now I had thought that once we had his seizures under control and we had ruled out any known causes (which we did) that we could stop having so many appointments (every three to four months).  I thought we could only go uphill from here.  BUT, yes there's that word again, the problem is that as much as half of those diagnosed with infantile spasm will later present with a completely debilitating form of epilepsy that leaves the person with daily, uncontrolled seizures of all kinds and a high probability of severe mental handicap.  (cue my heart sinking to my stomach)

Dr Q said that Levi is not showing any signs for this syndrome, but that it can present anywhere from age 2 to age 6 and even beyond.  So, we have to watch him closely.

It seems that since he's doing so well, Dr Q feels very encouraged that we probably won't have to worry about it.  But, just that there's a chance is pretty scary, especially when I was just thinking there was no way it could get worse.  Honestly, that's what I've been hanging on to until now.  So, since it can get worse I'm just having to learn to trust God in an entirely new way.   I am trying to hope for the best and yet be prepared if the worst were to happen.  
One thing I know is that God spoke to my heart when all of this was first starting.  He told me, "Levi is going to be who I made him to be."  I have been clinging to that even more since I heard that it could possibly get so much worse.  I keep speaking Psalm 139 over him - that's the one about being "fearfully and wonderfully made".  Please, please be praying for my Levi.  Would you pray Psalm 139 over him?  Would you pray that the epilepsy would not progress to this way worse syndrome?  Would you pray for his complete healing?  Would you pray for peace and grace for his Mom and Dad, too?

On another note (pun intended as you'll see), I've had the perfect outlet to help me process all of this.  I've joined the annual 5in5 challenge with a bunch of musician friends all over the globe this year!  It's really cool. We all have to write five entirely new songs in five days (get the pun now?  note.... song?  Ha!)  Anyway, a couple of the songs that I've written have come straight from the emotions of the past year.  I hadn't written much music since everything happened with Levi.  I think it was a way of protecting myself, so it's been really good to get it all out.

Here's the links to the songs that I mentioned above:  I hope you enjoy them.

This song is from day 4 of 5in5:

This song is from day 1 of 5in5: