The Value of a Life

I had to take Aaron to the doctor today because he has been hysterical for the past three days and I had no idea why. It turns out he has an ear infection and it looks like his tubes are gone, so we are probably on the fast track for our fourth set of ear tubes.

Life has been really stressful lately and I often feel like I am not doing enough for Aaron or I get frustrated because I just want to be able to understand what he needs. The communication is getting better, but it is still exhausting.

But tonight, in the midst of my stress and frustration with my own situation, I came across this post about another family's struggle.

Brick Walls

Appalled isn't a strong enough word to describe what I felt after reading this. I found this story posted on a Facebook friend's wall. This Facebook friend has a son with Down Syndrome and horrifyingly (is that a word?!) was told the same thing about her son.

To summarize what happened, this family has a little girl with a chromosomal disorder and she has kidney failure. She will need a kidney transplant sometime in the next six months. Her parents take her to the Children's Hospital of Philadelphia (CHOP) which has an excellent reputation as one of the best children's hospitals in the world. A few days ago, they went to discuss her medical needs with the Nephrologist and were told that she was not eligible for a kidney transplant because she is mentally retarded. They had written it down on a piece of paper and highlighted it. When the parents said they would find a family donor and didn't need to be placed on a donor list, they were told that the surgery still wouldn't be done at CHOP because of their daughter's disabilities. They told her mother that her daughter's life wasn't worth saving. TO. HER. FACE. If you haven't read the blog post, you need to. I can't adequately express what happened here because it didn't happen to me.

But the panic is rising inside me. Just because this little girl doesn't have Down Syndrome doesn't mean it  hasn't happened to children who do. I have already read multiple accounts of this happening to kids with DS. And it shouldn't be happening to ANYONE, regardless of their disability. If someone ever dared to tell me that my son's life wasn't worth saving, that his life is less valuable because he has DS, they had better say it as they run in the other direction. As far as our society has come to improve the lives of people with disabilities, we clearly still have much farther to go. No doctor should have the right to tell a parent that their child isn't worth saving because they might not be as smart as other kids.

I don't know what I can do about this, but I can't do nothing. It's not right. I can't stand that this is happening and something has to be done to make it stop.

So, despite the stress and struggles we have been dealing with lately, reading something like this suddenly puts it into perspective. All of the work is worth it. My son may not be able to talk to me yet, but he will. And his life will ALWAYS be every bit as valuable as anyone else's.

Christmas in Arizona

We have tried hard over the years to spend the holidays with our families. Since we got married 9 1/2 years ago, we have lived in four different states and had numerous types of work schedules to contend with but most years we have managed to get back to Georgia for Christmas. This year, even though we live on the other side of the country from our families, we decided it was best to stay home for Christmas.

Turns out it was a great decision. It was so much easier for us to be at home on Christmas morning. I was able to get the kids everything I wanted to get them without worrying about how big it was or how we were going to get it home.

We love our families and we missed being with them all over the holidays, but this is what works for us right now. I know I'm a couple of weeks late with this, but Merry Christmas everyone!

Not Going Home for the Holidays

After our horrendous plane trips last summer, we made the difficult decision to stay here in Arizona for Christmas this year, rather than flying back to Georgia to spend it with our families. While we are sad not to spend the holidays with all of our extended friends and family, it was really the only choice for us at this point. Regardless of the difficulties of getting Christmas gifts across the country twice, the high cost of airfare and the logistics involved, we would have done it if Aaron could travel a little easier. As it is, he can't.

His sensory processing problems make traveling a complete nightmare for all involved (including the 100+ other passengers on the plane), but mostly for him. When your body doesn't know how to process new sights, sounds and motions, being strapped into a car seat where you can't move for four hours on a plane full of strange people, sounds, sights, smells and motions is pretty horrible. I dislike flying for many of those reasons and I don't have any sensory problems. I can only imagine how terrible it is for him.

Luckily we have a very understanding family. Matt's parents were able to come visit over Thanksgiving and my parents will be here on Christmas. We will miss seeing our siblings, grandparents, aunts, uncles, cousins and friends but we are lucky that our parents have the ability to come spend the holidays with us. I know many families who aren't as lucky. Either because their families can't travel or they don't "get" why the child with special needs can't travel.

So, as I'm counting my blessings this year (and there are many, even though it has been a difficult year), at the top of my list will be the blessing of a loving, understanding family who has always been there to support us no matter how bumpy the road has been or how far away we are. It is not lost on me how much you mean to all of us.

Right after that will be the blessing of caring, supportive friends who are always there for me when I need to talk or vent. Even if you don't completely understand what I'm going through, it means the world to me that you will take the time to listen to me and try to sympathize.

I think I will save the rest of my blessings for another post, but this deserved a post of its own. And if you are reading this, you are probably one of those people, so thank you, we love you all!

Let's Hear it For Respite Care!

We finally started respite care last week. I hired two different respite care workers from the same agency (actually the same clinic where Aaron goes for OT, speech and feeding therapy). One of the girls came on Monday morning. It couldn't have worked out better, I was so pleased with her. She sat down and started playing with Aaron right away. I gave her some basic instructions about where things were, what I was going to be doing and she seemed quite comfortable. I decided to stay home since she hadn't ever watched him before and I want us all to be totally comfortable before I actually leave him home "alone". But I was able to stay in my room and write and get a few other things around the house accomplished. I heard Natasha (the respite provider) playing with Aaron, talking about colors and shapes, all sorts of things. He didn't fuss or look for me the whole time and he seemed very happy all morning. I am just so happy that it worked out so well. Hopefully the trend will continue!

The other girl I hired came for the first time yesterday and I was equally pleased with her. The whole morning went smoothly and both she and Aaron seemed comfortable. I was able to get a lot of work done and definitely felt more relaxed than I do on a normal day.

Both of them have already needed to cancel once on days they were supposed to come, but they both had significant and legitimate reasons. Hopefully it was just a fluke that they both happened within a week of each other and things will go more smoothly from here on out. Time will tell I suppose.

I am so glad it has worked out so well thus far. I don't want to get too excited, because I know as soon as I get comfortable something is going to come up and throw our routine out of whack again, but having this time is such a blessing to me. I can already tell that I am happier and so is Aaron when we aren't together 24/7/365. Having just a few hours on a regular basis makes such a difference. I can concentrate on other things I need to do without him pulling on my arm every 30 seconds and he gets undivided attention from the respite providers. I feel like I am able to devote more attention to him when we are together too because I'm not constantly trying to do everything else that needs to be done. Everyone told me I would say this, so I'll go ahead and say it : I should have done this sooner!

I don't know if I really believe that though. I think I did it now because I felt like we were both at a point where it was going to be good for us. And I don't think I could have said that six months ago. But there is no point looking back and thinking about decision that we could have made, all we can do is plan for the future and go with the decisions we did make.

Food Allergies? Sure, Why Not

The latest saga in the never ending medical drama "Aaron's Anatomy" is all about food allergies. As if having Celiac disease and being lactose intolerant weren't enough, for the past two + months we have been trying to figure out why Aaron has been getting sick every week or so.

We have come to the conclusion that a soy allergy/intolerance is to blame. Every time he drinks soy milk (which was the only thing he could drink other than water since he can't have regular milk) or eats anything with soy in it, he either vomits or screams with unbearable stomach pain.

Of course, similar to gluten, EVERYTHING has soy in it. Even half of the gluten free food we (used to) buy is made with soy flour, soy lecithin or some other derivitive of soy. So, Aaron's diet now consists of fruit, Chex cereal and the two kinds of gluten free crackers I have found that don't contain soy. Not exactly well balanced. He refuses to eat meat and most vegetables(although last night he ate chicken and broccoli - it was a miracle - and probably a one time thing) and won't take any of the dozens of vitamins I have tried to give him.

I am pretty much beside myself with stress about what the heck I am supposed to feed him now. To make it worse, he's three, very picky and doesn't understand why he can't eat what everyone else is eating. And putting the rest of the family on a gluten free, soy free, dairy free diet isn't exactly practical.

To add to the apparent entertainment of the medical ailment gods, we are going through allergy testing now and his test today showed that he may be allergic to peanuts and corn. WHAT THE H*!? It's not definite yet, so all I can do is pray that today's result was wrong. He doesn't like peanut butter anyway, so that one doesn't stress me out quite as much, but corn?!?! His grains were already limited to rice, potatoes and corn and if you take away corn - I really don't even want to think about it.

Alright, I'm done whining and complaining now. I will deal with it, just like I deal with everything else that gets thrown at us. But sometimes I just want to say - enough already!

Boo! I'm Back!

Now that I don't feel an obligation to blog every day, it's hard to keep up with it again. In my defense, we have had an incredibly busy (even for us!) couple of weeks. Halloween, Jacob's birthday, two doctor's appointments, Jacob's birthday party, a day in the ER for mom and our usual schedule of therapy four times a week.

We are also in the process of trying to find a respite provider for Aaron and who knew how much time that would take up! Once we got the hours approved, my phone started ringing with dozens of offers from companies that have respite providers available. So now we get to start the process of weeding through them all, interviewing and choosing the best person for us. Interviews start tomorrow - wish me luck!

Halloween was a lot of fun for all of us. Jacob has gotten into being "scary" this year and decided he wanted to be a vampire. It was an easy enough costume. I found a black cape with a red lining at Michael's and he wore a white button up shirt and black pants. To add to the effect, we painted his face white/gray and painted blood dripping down his chin. He wore one of the half dozen pairs of vampire teeth that he owns and was a happy camper. I must say, I think he made a pretty good vampire.

We went trick or treating with one of his good friends from school, Ethan. He and Ethan also happen to share the same birthday - and his parents are named Matt and Kristi. Same spelling and everything - crazy, I know. Aaron dressed as a pirate and we pushed him in the stroller around the neighborhood. We had planned to let him get out and walk to a few houses, but there were literally HUNDREDS of kids on just one street in our neighborhood and it was just too hectic. He had a great time just looking at everyone though. Jacob loaded his plastic pumpkin up in a little over an hour and we headed home. It was a bit crazy since it was a school night, but we all had fun and we'll have enough candy to last until next Halloween at least.

In an effort to keep this post from looking more like a novel, I will write about Jacob's birthday party and the rest of our week in a separate post!

Thank You!

October has come to an end and that means the end of Down Syndrome Awareness month and the end of the 31 for 21 blog challenge. Although I didn't quite manage to blog every single day this month, I hope you enjoyed following our family and learning a thing or two about Down Syndrome.

Just because the month is over doesn't mean I won't be blogging anymore of course and I hope you'll continue to read along.

Aaron has brought so much to our lives but the greatest gift he has given us is a new perspective on life. There is no way to really explain it adequately. He gave me the ability to see that the world is so much bigger than I had come to believe. That what is going on in my little world shouldn't consume me. That there are many, many people out there who are still discriminated against because of their "disabilities". That I can make a difference, even if I am just one person. If I make a difference in just one person, it is still a step forward. That I can take something that terrified me just three years ago and turn it into a passion that I will work tirelessly for. That even though people with Down Syndrome look a little different and learn a little differently, they absolutely deserve a chance at life and they make a positive difference in this world. I have no doubt that my little boy is going to grow up and do great things.

Thank you for taking the time to read my blogs and for supporting my family!