Weekend Recap

We had a nice weekend and the weather was wonderful.

Friday night Austin and I picked up a Jack O Lantern pizza from Papa Murphy's.  It was delicious.  We also picked up the pictures Austin took with his disposable camera.  He was very excited once he saw the outcome.  He did a great job and took some good pictures.  I didn't realize how expensive it would be to have them developed.  Printing pics from a digital camera is 1/4 the price of a regular camera.  But it was fun for Austin. 

Saturday we had a garage sale for most of the day.  It was fun.  I like people watching and seeing what people buy.  Jonathan had what he called a redneck hot tub.  It's an attachment to put on a regular bath tub to make it like a jet tub.  He found it and it was used.  I told him to throw it away because no one will buy it.  I ate my words during the last 5 minutes of the garage sale.  Someone bought it!  After the garage sale we went to Lowe's and Austin and I started looking at Christmas lights and decorations to see how we want to decorate this year.  I'm excited and he likes to help pick everything out.  It will be nice to come home and see our house lit up.  After Lowe's we went to Stephen and Kendyl's house to play Rock Band.  I helped Austin play the drums.  He was pretty good and we had a lot of fun.

Sunday was a pretty lazy day which was nice after being up so early for the garage sale the day before.  Sunday afternoon we went to the park across the street and played on the playset and walked the cute little path through the trees.  It was beautiful outside.  We did our weekly trip to Wal-Mart and had spaghetti for dinner.  It was a nice way to end the weekend.

A Reason

A Special Child (Author Unknown)

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 seem very slow;
accomplishments he may not show.
And he'll require much extra care
from all the folks he meets down there.
He may not laugh or run or play
and his thoughts may seem far away.
In many ways, he won't adapt
and he'll be known 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 this special job for you.
They will not realize right away
the leading role they're asked to play,
but with this child from above
comes stronger faith and richer love.
And soon they'll know the privilege
given in caring for this gift from heaven.
Their precious child so meek and mild
is heaven's very special child.

I remember one day we were sitting at a table in Applebees.  Austin was still a baby and my mom said to me.  He is here for a reason.  I completely believe everything happens for a reason.  And from that moment on I always think about how important this little boy is and what a profound difference he has made on all of our lives already.  This amazing little boy has kept our family together.  If he wasn't here through all the bad stuff that has gone on we wouldn't be where we are today.  He is on the front of my mind for every decision I make in life.  He has changed me for the better.  

I read the above poem and starting sobbing.  As much as this situation sux, God chose me to take care of this very special child.  That is a true blessing.  And not only did he choose me, but all of you too!  We were all chosen to be here for this little guy and give him the love he needs and forever be changed for the better because of him.  

Some days are really hard.  I keep thinking how much more can we take?  I know God only gives you what he knows you can handle, but some days it's too much.  Austin already has to grow up without a father, wasn't that enough?  Austin has had people walk out on him, wasn't that enough?  He has been through so many medical tests and procedures.  And the biggest blow of all...a fatal genetic disease.  Just typing that kills me.  I don't talk about that part much.  It's too hard.  I don't know how to deal with it. 

I'm trying to learn to live each day one at a time.  Trying to find the joy in every day and make sure I spend as much time as I can with my little guy.  He is so persistent and determined and smart.  I know that he will do something great and he was put here for a reason.   I hope as he grows he changes lives and touches peoples hearts.  He has already done that for me.

So Happy It's Friday!

This is Austin's school picture.  Sorry for the poor quality but I took a picture of it with my phone last night.  He is in a stage (or so I hope it is) of raising his eyebrows in every picture.  I asked him why and he said because it makes him look better.  Crazy kid! =)

I'm so glad it's Friday I am ready for the weekend.  Austin is going on a field trip to the pumpkin patch with his school today.  Last night he told me they could take a camera with them on their field trip.  Of course he wasn’t taking my nice one so I got him a disposable one and he thought that was the worst thing in the world.  Where do I see my pictures?  You don’t.  That’s stupid.  No it’s like a surprise when we get it developed.  Developed?  Yeah we take it to walmart and they give you back real pictures.  Why?  I’m supposed to look at them on the computer.  No you will get real pictures.  But then how do I get them on the computer.  This is dumb.  No Austin it’s fun. I'm hoping he will embrace it and enjoy developing the pictures.  I forget how spoiled we are these days with the instant gratification of digital pictures.  And we are spoiled in so many other ways.  Yesterday I went to Hobby Lobby to get some yarn and forgot my 40% off coupon.  I was able to pull it up on my phone and they can scan it on my phone and get my discount. I have done that at American Eagle and Kohls too.  What did we do in the days without smart phones??? =)  

We are doing another garage sale tomorrow.  Hopefully we will make some money!  I mainly just sit back and people watch and take care of the money, but it is actually kind of fun.  

I heard back from Endo and Austin's appointment is scheduled for January 23rd.  =(  I was really hoping to get in sooner but they only see Endo patients on Mondays.  They said I can call once and week and find out if anyone has cancelled and take their appointment  and we can get in sooner so you can bet that's what I am going to do.  

I'm hoping to post some pictures this weekend of our Hot Springs trip.  We had a blast. 

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!