Rollercoaster Ride

I feel like I am on a roller coaster lately.  We have been receiving so many responses since the news story aired about our family that it is hard to catch our breath.  It is overwhelming but in the most wonderful of ways.  I am feeling very humbled by people’s responses to our situation but also so grateful as I know that our story could be so much worse.  I have seen it first hand.  I spent the entire summer at the hospital with Nathan and saw sick children everywhere and every time I saw one I thanked God that it was not my child that was laying in a hospital bed.  I know that it can always be worse.

However, lately, things have changed with Nathan.  He is so tired all the time and I am wondering if it is the effects of his medication or the cold he is recovering from.  I will speak to his Dr. about this and see if there needs to be a change made.  Also lately we have had some of the anger issues come back.  He seems to be very agitate in the afternoons and it is directed towards me.  I think he tries so hard to hold it all together at school, that once he gets home he just let’s go.  I try to get a snack in him as soon as we walk in the door and let him have some “down” time, but he never has “down” time.  He does not know how to sit still.  He is always going 100 miles an hour until his head hits the pillow at night.  We have been trying to put him to bed a little earlier in the hopes that it will help him be more alert at school and keep him calmer when he comes home.  So far, it has not been working out too well.  I get reports from his school that he is falling asleep and I just can’t seem to figure out why he is so tired.  So, Mommy is on the hunt for information.  Perhaps he needs a supplement or something to help perk him up.

It has been so cold here the last few days that they have had indoor recess and he has been able to go into his general classroom and play with his peers.  That seems to be the highlight of his day and he is eager to tell me about the kids he is playing with.  It is so nice to hear that he is playing with some new kids and I hope that he is developing some new friendships.  I want so badly for others to understand him and want to be around him.

As for me, I am tired.  I want a normal existence, but I realize that this is my normal and honestly I am ok with it.  I truly wouldn’t trade my life for anything, but I am not going to lie, it is hard.  Ask any parent of a special needs child and they will probably say they are tired.  We don’t have baby sitters because honestly, I don’t trust anyone to understand my son.  I have left my kids with my parents, my brother and sister-in-law and my neighbor.  That’s it.  I know there is respite care out there that is fantastic and maybe someday I will be more comfortable going that route, but for now, we keep it in that small circle.  He is comfortable with all those people and they understand him and love him more than anything.  It eases my mind when they are not with me to know that they are with someone who loves them.  For Christmas, my parents gave us a gift card for dinner and a night out (over-night) and I cannot wait to take them up on the offer as Jay and I need a date night.  It has been way too long and I miss having just us time.

Again, to all of you out there who have taken time to send us a postcard or a letter or some other special object, it means the world to us and we are grateful for all your thoughts and prayers.

Stacey

Local News Story

Recently, I was contacted by our local newspaper to see if they could come and do an interview with us about our story.  I have been blown away by the response we have received since the airing of the 9news story.  Every day we receive a full mailbox and most days we have a package on the front porch.  I hope our mailman is not getting frustrated with us:)  It has been very humbling for us to see the amount of support that is out there.  We are loving going through all the postcards, brochures, dvd’s, personal pictures, personal postcard collections and the list goes on.

We went this weekend to meet with a family who donated a CCTV to us.  If you saw the news piece, this is the same type of machine that he uses at school to do his work on.  He puts the paper on a tray and it magnifies it on to a screen and he can slide the tray back and forth to read.  It is amazing to have access to this in our home as it will help us with his work at home.  Homework has been a struggle as all we have had is a small dome which is hard for him to use.  While at their house, we met their handsome young son, John who is 9 and also Autistic.  It was so wonderful to see Nathan connect with someone who is like him.  They got along really well and John even gave Nathan some of his Legos.  We do not live close to them, but we all decided it would be worth the travel time to set up playdates so that the boys could play together.  I would like to personally thank the Kyser family for their generous donation and the time they spent sharing their journey with us.  It is through these connections that I learn more and more.  I realize, we are not alone and there are others out there who want the exact same for their children as we do, to be loved and respected for who they are.  I look forward to getting to know them better.  Again, from the bottom of my heart-THANK YOU!

We have also had an amazing offer from a breeder who would like to give us a Labradoodle puppy who we could train as a therapy dog for Nathan.  The litter is not due until June/July so Jay and I are thinking very hard about this generous offer.  My gut tells me that we have to jump on this offer as it would be great for Nathan, but we are making sure we are not just falling in love with the beautiful face of a puppy and that we are making sure that we can take on that additional responsibility.  I have been in contact with trainers to see what we would need to do to make sure that it would be the best fit for Nathan and our family.

Another special Thank you to the 5th grade class of Ms. Strabala.  Since adopting Nathan as an honorary 5th grader they have done special things for him.  Right before the Christmas break they brought him into the classroom to give him a present.  They gave him a huge Transformer that he loves.  He plays with it all the time and I think is pretty tickled by the attention he has received by the older kids.  They are an extraordinary group of kids and I am so glad that Madison is surrounded by great people with big hearts.  It means a lot to me that they have taken him under their wing and are watching out for him.

I have been cataloging all of the postcards and things we have received and let me tell you that I have multiple spreadsheets going.  It has almost become a full-time job trying to keep track of all the places that are coming in.  I am doing my best if there is a return address to send a thank you note.  If you have not received one yet, please bear with me as I am a little behind.  Nathan and Madison’s school have put maps up in the hallway and I will take the postcards to them tomorrow and they are going to identify all the places that we have received so that the students can see the response as well.  It is a great geography lesson for us all!

I have attached a link to the article that was done by the Parker Chronicle.

Thank you all for everything, we appreciate it so much.

Stacey

http://www.ourcoloradonews.com/parker/news/parker-mom-shows-son-the-world—with-postcards/article_7c840532-59df-11e2-8fb5-001a4bcf887a.html

The New Year

When I think about all that we have been through over the last year, it amazes me that I am able to sit here and feel like we have made progress. It has been many years that I have felt like we are moving forward. There has always seem to have been some sort of setback. This year was hard, probably the hardest we have ever had, but from where I sit now, we HAVE made progress. We are in a better place and as a family we have grown closer and stronger. I am thankful for where we are. The road ahead is always long, but I feel like we are on the right path.

Madison is growing before our eyes. She has made such big strides this year and is growing into a beautiful young girl. She has many friends and does well in school. She still is the most amazing big sister I have ever seen. She loves her brother fiercely and would do anything to protect him, emotionally and physically. She is a loving daughter who wants attention from her Dad and me. We try to do things just for her so that she always knows what an important and special person she is. She is going to do big things in this world and I have seen first hand how she is already changing lives. She has had her share of difficulties, but I would like to think that she has grown from all the experiences she has had. She has had to grow up fast. Having a special needs brother is like no other. She has had to give up things that other kids don’t and has made more sacrifices than the average 10 year-old, but she has taken it in stride and keeps moving forward.

Last year at this time, we didn’t know what we were doing with Nathan. I would like to think that when you know better, you do better and I think we know better. We learned a lot when he was in the hospital. They provided us with many tools and resources that proved very helpful. I feel like we are able to help him a little better. We still struggle every day, but we are making progress. We are able to reach him in ways that we weren’t able to before. Nathan lives in two worlds. His and our’s. Sometimes it is easy to get him into our world and sometimes we have to go into his world. Everyday is something new. We have learned how to navigate between the two to effectively parent him. When he is having a hard time it is up to us to figure out how to pull him out of his world and into our’s and sometimes we have no choice but to go into his world to reach him. We are in a really good place right now with Nathan and that is what we focus on. I can’t think of a month or a year down the road, I focus on today. We live day-to-day and that is what works. I am thankful for the place we are and look forward to every day with him.

One person I haven’t talked about is my amazing husband Jay. He is my best friend and the only one I would ever want to go through this life with. We have become so close with all the things we have had to deal with over the last few years. I am so thankful that it drew us closer, because this could really tear people apart. He is the most amazing Daddy to Madison and Nathan and the best husband a woman could ask for. He loves his family more than anything. He is the most loyal person I know. He had a wonderful example from his Dad of what it means to be a father and I am so grateful to my father-in-law for his example. Jay is the real deal and I am in awe everyday and at what he offers our family. He loves us with every fiber of his being and I know that as long as he is by my side we are all going to be ok.

I look forward to 2013 with optimism. I know that everyday won’t be easy, but there seem to be more easy days than hard ones lately. This year I am going to do my best to be the best wife and mother I can possibly be. I want to do fun things with my kids. I want to take them somewhere special and make as many memories as possible. So from our family to yours, we wish you the happiest of New Years. May it be filled with love because at the end of the day that is what really matters.
Stacey