Thank you

I wanted to take a moment to say thank you for taking the time to send our family on a “journey” around the world through the postcards that you have sent.  Having a new place to arrive each day has been such an exciting time for our family.  We literally have started to receive postcards from all over the world.  We sit at the dinner table and explore each place in detail, even down to looking at the stamps.  It has been such a joy!

I want you to know how much it has meant to not only Nathan but to his sister, me and Jay.  The generosity of all the people who have taken time to mail a postcard has touched us beyond words.  We would love to see them keep coming.  Getting the mail has become quite the exciting event.

We go to Nathan’s next eye appointment on July 27th, so we will be able to provide an update as to where his vision is at that time.  In the meantime, thank you again.

Stacey

Nathan’s Miracle Shot

Every parent secretly hopes that when their child plays a sport that they are the superstars.  We signed Nathan up for basketball since he talked about how he played at recess and expressed enthusiasm towards it.  This was all before we realized how bad his eyes were.  The first season was hard to watch, literally.  He just sort of stood in the middle of the court and did not do much.  It was frustrating from a parents point of view, because we could not figure out why he would not engage and go after the ball.  But he kept talking about how much he loved it, so he kept playing.  At the end of the season, he had not made a basket.

We started the winter season, and immediately we could tell that something was going to be different during this season.  There were two coaches and both had sons on the team.  There sons were good, but were not hot shots.  They shared the ball and the coaches said at the first practice, every kid will make a basket!   This was a team that was built on being a good team player and helping your teammate.

It was during this time that we met with the Chief Ophthalmologist and learned that his vision was 20/200.  NEVER had we heard the words legally blind.  During this time we could not figure out why he wasn’t going after the ball.  When his teammates would pass the ball to him it would go through his hands or why he just stood there and watched.  Why he would flinch when the ball or a kid would come at him now all made perfect sense.

I started to notice that the coach on the sidelines would be telling his sons to hand the ball to Nathan.  And they were such good teammates, that sometimes they would be wide open right under the basket ready to make a shot and run back to half court to hand the ball to Nathan.  It just never worked.  Nathan tried, but he was not able to make that shot.  But they kept trying and the entire team had rallied around Nathan in a way that I had never seen 7 year olds do.  At that age they want to be the star,  not share the ball.  Then on the second to last game, the coaches son tossed the ball to Nathan and he threw it for all it was worth and it went in!!!  I, of course lost it and can be heard screaming like a little girl in the background.  But the neatest part of it all, was that everyone knew.  The referees knew, the coaches knew, the other parents knew and even the other teammates knew that this was a kid who is Autistic and visually impaired and they helped him get this shot.  So as you can see in the video, they are just as happy as he is.

What happened next was so cool.  Both of the referees gave him a high-five and knuckles and the coach called a time out just to tell him what a good job he did and then pointed to me and told him to go give him Mom a hug.  When I finished hugging him, I turned to sit down and there was not a dry eye in the stands and they were all clapping, both teams.  I think my husband, Jay says it best on the video, “He’s been working for that for a long time”.

That’s what friends are for

I know how important it is to have friends that support you in life.  I never knew how important those friends are when the times get tough.  I am fortunate to have a small group of women that have rallied around me and supported me through all the stuff that we have been going through.  I have been able to speak openly and honestly, which is something that has been missing.  I feel like we have been hiding in our home and dealing with this all alone, and only letting snippets of information out.  It seems the flood gates have opened and we are finally able to speak and it feels good. I realized that people are generally good.  Have I had my experiences with people who are ignorant and just don’t know better?  Sure.  Have I had experiences with people who say things that come out wrong, but have the best of intentions?  Sure.  I can usually figure out which category you fall into.  

What I have discovered about myself is that I have become very defensive.  I have been on the receiving end of looks, stares, insinuations and flat out comments.  I don’t like who I have become.  I am working on letting it go.  If you know me, that is not my best quality.  I tend to hang on to words that people say.  I let them hurt me, when I should not even listen.  But let’s face it, words can hurt. I want to be easy going and kind in the face of anger or ignorance.  I want to be a reasonable voice for my son who can not always reasonably speak for himself and if I just fly off the handle at people then that only fuels the fire for the way people look at Nathan and that is my last intention.  

Our families have been invaluable to us, for they have supported us unconditionally through this whole process.  They love Jay, Madison, Nathan and me with all their hearts.  They would do anything to help us.  They have listened and supported and been the ones that we have leaned on.  It is nice to have friends that can share in this journey with us as well.

So you know who you are, THANK YOU!!  You are forever in my heart and we love you:)

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While they are sleeping

Sometimes late at night when the kids are sleeping, I will go and sit on the floor next to their bed and watch them sleep. It is at that moment where they are the most peaceful. There is no arguing, crying or talking back. Just the look of an angel, sleeping peacefully.

It is at these moments when my mind starts to wonder. What do they dream of? What does the future hold for them? And lately, I feel really cheated of the dreams that I had for them. The dream for my daughter to be a little girl and run around with friends and do fun things. Now, the reality is taking care of her brother. She does not get to run around with friends since she can’t have play dates at our house and it is hard to make other things work. If she wants to go somewhere, we have to judge if Nathan can handle it. Try telling a 10 year old that she can’t do something due to the fact that it “might” upset her brother. We get a lot of “life’s not fair, or it is always about Nathan or it feels like you love him more”. And you know what the worst part is? I can completely see her point. Life is not fair, It does seem to be always about Nathan, but it has to be right now and there is NO way I could possibly love her more. But how do I get her to know that?

When Nathan sleeps, the sadness seeps in deeper. My dream for him to do the things that all of the other kids his age are doing. There are certain things that are a right of passage for a child. He should be able to ride a bike, read a story, swim in a pool, cross the street without me freaking out. These are all things that I think people take for granted, but when I see other kids doing them it hurts my heart, since I know Nathan can’t and won’t be able to do those things. I have and am still grieving for him. I grieve for the loss of his childhood that he doesn’t even know that he has missed out on, and I grieve for the dreams that we had for him. I have never said, “Oh my kids are going to be doctors or lawyers”. I have always said that I want my kids to do what makes them happy. I do not care what profession that is as long as they are happy, But I don’t ever want them to have a job that is only what they can do. I worry about that with Nathan. What challenges will he face with his vision? Will he be able to have a job? Will he meet someone who will love him? WIll he be able to live on his own? Where will he live when Jay and I are gone?

I don’t have the answers, and will never have the answers, but I have all the questions in the world. So for now, I will continue to watch them sleep and pray that they will find their way in this world.

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I never would of thought…

I loved being pregnant, I loved everything about it, I did everything right.  I ate good (well sort of) and I did not drink, I did not smoke, I gained the perfect amount of weight, I did everything right.  On March 25, 2004 at 12:01 AM, I delivered a beautiful baby boy.  They handed him to me and he cried, the most beautiful cry I had ever heard and they told me that he was HEALTHY!! Who would have thought that if I fast forwarded my life, I would be here.
This past week, we felt the need to take Nathan off a medication and on Saturday the reaction was so severe that we wound up at the emergency room of the local hospital.  Unfortunately, we were told, there was nothing that they could do other than let it run its course to get out of his system.  So we took him home, to see NO improvement and only symptoms worsening.  It is the most heart wrenching thing to watch your child suffer and not be able to do anything to help them.  On Sunday, we realized that we were needing to do much more.  We took him downtown to Children’s Hospital Emergency Room.  We spent 6 hours there and were talked to by several people to find out again that there was nothing that they could do and that we could stay in the little tiny room overnight or take him home.  Anyone who knows Nathan, knows that he will not stay in a little tiny room for long.  And since it was already 11 at night, we figured he would fall asleep in the car and we would just tuck him in and start a new day.  The Doctors kept telling us that Monday was the magic day for him to feel better.  And while Monday he did show some signs of improvement, he is not better.  Something has happened to my little boy, I don’t know what and I don’t know how to fix it.  He is not broken, but he needs help and I have to find a way to get it for him.
The Doctors want him enrolled in a day program that will provide intensive therapy for all of the things that he suffers from.  Too many to name. Now, we wait.  We wait for hospitals, and insurance companies and all the big companies to decide if he deserves the help that he needs.  We wait, and we will wait as long as it takes to get him the help he needs.
I remember hearing him cry when he was born and thinking, ok, he is ok.  I never thought years down the road to realize that health can fade, and it can fade in a child.  I never would have thought….

Rough day

Many of you may know that Nathan is diagnosed on the Autism Spectrum Disorder (ASD), specifically Aspergers. We have tried to help him in any way possible. Unfortunately, it means that we have had to make the hard choice of using medication. It was not a decision we took lightly and have been on this pathfor over 5 years?

Yesterday and today we noticed that things went downhill for Nathan fast. We wound up taking him to Children’s Hospital. It turns out he was having a severe reaction to coming off a medication. He is out of sorts and it was very scary. We will watch him closely to make sure he is well.

Please say an extra prayer for him as he is really struggling.

Thank you!

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