Not What I Had Planned

Welcome To Holland by Emily Perl Kingsley

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 a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans-the coliseum, the Michaelangelo 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 stewardist comes and says, "Welcome to Holland."
"Holland?" What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy! All my life, I have dreamed of Italy!"
But there's been a change of plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you 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 guidebooks. And you must learn a whole new language and you will meet a whole new group of people you would have never met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around and you begin to notice that Holland has windmills. Holland has tulips. Holland even has rembrants.
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 go away because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

I found this the other day on a MD site.  I think its a wonderful way to describe what I feel.   This in not what I had planned.  When you have a baby you do dream of all the wonderful things that life has to offer.  Then sometimes you get thrown a curve ball.  In this case it's more like a big punch in the gut that knocks you off your feet.  The truth is not matter how much I accept Austin's diagnosis and our future the pain of losing "how it was supposed to be" is always there.  It probably always will be.  I just hope that on this journey I can learn to let go of that pain and know that for whatever reason this is what God has planned for us and learn to embrace Holland and all it has to offer. 

Dentist

Blogging everyday is a little difficult since I don't have internet at home.  I know it sounds like I'm living in the dark ages, but $70/months just wasn't worth it for me.  Plus boyfriend lives just down the street and I can use his anytime.  I do miss it, but I get a lot more done around my house at night without it.

Yesterday Austin and I went to the dentist for a cleaning.  I scheduled our appointments together to get it all done at once.  He went first and did great.  I was next and he stood over me watching the whole time asking the hygienist all kinds of questions and telling her stories.  We both had a great report and no cavities!

It's crazy to watch your kids grow up and see how much they are like you.  I see so much of my personality in him.  He is very stubborn but also very loving and helpful.  He is quiet at first but once he opens up to you he will not stop talking.  The poor lady at the dentist knows just about every detail of our lives now. =)  But what I am loving most right now is his sense of humor.  He is the funny guy.  Loves to laugh and loves to make others laugh.  We have the best time together just giggling.  This life he is going to lead is going to be very difficult but I love that at the end of the day we can always smile together.

HGH

Austin has always been on the small side.  I attributed that to his poor genes. =)  But it turns out he has a growth hormone deficiency.  A few weeks ago we went to see genetics for his Muscular Dystrophy (I plan to do a post on that soon).  While we were there we started talking about Austin's height and how he seems to be falling further and further behind kids his age.  They decided to go ahead and test him for a growth hormone deficiency.  They took and x-ray of his wrist to see what age his bones say he is and they drew some blood to test the levels.  The doctor called and said his growth hormone levels are low and his bones say he is a few years behind his actual age.  The treatment is daily HGH injections.  I will have to give my little guy a shot EVERY day.  That is the only part of this I am not looking forward to.  I think it will be so good for him.  To be closer in height to the kids his age.  He will never be tall, but to be average would be great. 

After speaking with the doctor today there are a few steps we have to take to make sure insurance will cover their part of the cost of these treatments.  First we have to go and see and Endocrinologist.  He is going to talk to us about the treatments and the side effects and what to expect.  After speaking with the doctor they will do a growth hormone stimulation test.  This is a 3 hour test.  They will inject the HGH and then monitor the levels in his blood every 30 min.  This is required by the insurance companies before they will cover HGH.  Once the test is done they send a letter to the insurance company with the results and give us a prescription for the drug.    I will update on the progress.  But for now we wait (AGAIN!) for them to call us and set up and appointment with Endo. 

Dinner Date

I would really like to start blogging more.  Try for every day.  Or at least the days we do things.  Even the little things.  I have had some tough stuff to deal with lately and I have learned life is way too short and I want to document every little thing to look back on later.  So today is day 1 of hopefully many many more days of posts.  

Tuesday night Austin and I went on a little date to Zaxby's.  I love that place.  Kids eat free after 5.  I got a meal and Austin got a kids meal and it only cost $5.45!  That's a bargain.  We don't go out to eat that often so I like to take Austin out on a little date every once in awhile.  It's a time we can really sit and talk to each other and enjoy each others company.  When we are at home there is always something to do.  Laundry, dishes, clean etc.  I think he really enjoyed my undivided attention.  And that amazing little guy deserves it!

Spring Break Day 2

Today was a great day. We got up and hung out at the house for a bit since we didn't have anywhere we had to be. Then we went bowling. When I signed Austin up for soccer we got two free bowling tickets so we used them today. We got bowl for free!! And we had a great time. They put up the bumpers and let Austin use a ramp to send his ball down. It helped a lot. I won the game but Austin was only 7 points behind me.

Austin's "Oh Yeah" dance when he does a good job =)

After bowling we went to Target because Austin received some money for Easter and wanted to buy something with it. He picked out a Hot Wheels and paid for it all on his own and got his own receipt. He was so proud. I bought a Brita water pitcher. I realized we have been spending so much money on bottled water and need to stop that. This pitcher cost about the same as 3 weeks worth of bottled water and the filter in it will last for months. The pitcher was $5 off today at Target! It's amazing the ways you can find to save money when you are on a tight budget.

After Target we had lunch at In-N-Out with Grandpa Rich. We love our In-N-Out! We then came home and Austin is playing Cars again and I am "spring cleaning" our house. Time to get rid of the old clothes and clean out the cupboards. Austin said today was the "Best Day Ever!" but he says that about most days. =) At least he is enjoying himself.

Spring Break Day 1

Austin is on spring break this week. Since I am not working right now I am trying to enjoy this time with him and try to find some fun inexpensive things to do since we don't normally get to spend this kind of time together because I am usually working. Day 1 turned out to be a little boring. I had to go in for an ultrasound (I have some ovarian cysts). Austin stayed with Grandma and played his Cars game on the Wii. We ran some errands and cleaned up the house. It was a cool rainy day so it was perfect for catching up on housework and errands. The rest of the week will be more fun!

New Soccer Season

Austin just started his 3rd season of soccer. He really enjoys playing and it's fun to watch. During the game this weekend the coach told him it was his turn to sit out and let another little boy come and play and Austin refused to leave the field because he loves playing so much and wanted to stay in the game. I did finally coax him off the field and tried to explain that each person on the team has to sit out part of the game so that everyone gets a chance to play (even thought he already knows this since it is his 3rd season). I'm just happy that he loves it and wants to play. What I love about it is the relationship he builds with his coaches. He does not have very many men in his life to be role models and I enjoy seeing him interact with his coaches and watching him learn from them. I'm glad we can find a way for him to have role models to look up to.