Yesterday was a bad day for me. I was exhausted to begin with, so I was feeling everything more and with a much more negative attitude. Things have just been snowballing. Tyler has been having more issues with his emotions. Potty-training is at a dead stand-still. Ash is in the midst of his terrible Terrible Twos. Work is work!
I also always assumed, as I have been fundraising for my Arkansas 5K Walk Now for Autism Speaks, that all non-positive responses would fall into one of three categories:
2) No response
3) Yes, but then no donation
I respect and expect all three of these responses. I am buying the gas for my car on a credit card right now because my husband was on disability for two months following shoulder surgery. We have no money right now. We will have no money for several months while we play catch up from only bringing in one paycheck for two months. So I am totally aware of the reality of money and how much people have of it. The only response I get bummed about is #3. I respect #1 and #2 more because I get my hopes up with #3 and then they get brought back down again.
Yesterday I discovered a #4 and it was NOT pretty. It started out as a #1 and then continued on into the land of, “Who do you think you are?” The thing is, I really respect this person and I really respect the honesty that this person holds to and the reasons why she was saying no. The format that it arrived in was not enjoyable, however.
I also read in the news yesterday that autism insurance coverage for military families is going to have a major setback in terms of maximum dollars allowed to be spent on services for autistic children. This following the victory of having coverage expanded. Unfortunately, have coverage expanded won’t be very helpful if you max out your benefit dollars less than half way through the year.
So I cried on the way home from work. I cried when I got home. I cried when I started doing laundry and packing for our trip to Nashville to see the folks. I was texting my mom and talking to my husband. They were both very encouraging and were reminding me that I set my goals too high (in a very loving and positive way).
Honestly, though – I am exhausted. Very much so last night. I have been dealing with a lot of emotional baggage since we first starting noticing serious developmental delays in Tyler. The past two years have been ROUGH. They are still rough. They will continue to be rough. As a result, my own body and health have seriously declined. I have gained a lot of weight. I show symptoms of depression and chronic fatique syndrome. About six years ago, they found a growth in my thyroid and I had to have half of it removed, so I am on thyroid supplements for the rest of my life. I went back to the doctor a couple of months ago and discovered just how bad my weight gain had gotten in a relatively short period of time. I also got the same response I always get when I go to the doctor, “I don’t know why you are sick, why your body hurts all of the time, and why you are gaining weight.” I think that maybe, if you have been reading my blog, that you and I both know why. He did however, because of the weight gain and fatique, decide to bump up my thyroid medication. I am also on Nutrisystem now to try to deal with some of this weight gain.
The result: I am eating about 180 calories a meal while simultaneously being hyped up on extra thyroid hormone. I have no energy coming in and I am burning energy like a mad person. I can’t sleep at night. I woke up two nights ago at 4 AM and decided to paint. The consequence: I was a crying, discouraged, exhausted mess last night. Just because I can’t sleep doesn’t mean my body doesn’t desperately need it. If I don’t figure out my energy-in/energy-out situation very soon, I am risking a serious crash. Last night was a wake-up call for me.
So I was dealing with all of this last night and it was not pretty. As my husband and I were sorting clothes for the next load of laundry, we hear Tyler in the other room with Ash.
History: Tyler has always been a big Angry Bird fan. He loves to play that and Bad Piggies. He also becomes easily frustrated with the game. He doesn’t just want to win the level. He plays it and plays it until he has found the optimum series of moves and this becomes his standard (Don’t know where he could have gotten this little trait from…). So we have always been very encouraging of the idea that it is okay to not get it right away. “Its okay, Ty-ty. That is a hard level. Just try again.” Ash has recently gotten into Angry Bird himself. At first, it was just to watch the little video clips the game offers, but he has been dabbling in the actual game for a week or two.
So our little Tyler, our son who has had to undergo surgery and countless speech therapy sessions to help him learn how to talk, has been coaching Ash. “Its okay, Ash. Try again.” “Ash, go higher. You can do it.”
Last night, it was, “Ash, you did it! You did it!”
Our 4-year-old son was so excited that his little brother had beaten a level in Angry Birds.
This morning as we were getting in the car, Ash decided he wanted his Angry Bird stuffed toy since Tyler had one of his. I told him I had already packed it for our trip and he would get it tonight. Ash, of course, did not like this idea. Tyler reached out and gave Ash his Angry Bird toy.
These are the moments that can take my broken body and my despairing heart and give me new life. These are the moments that make being a mother worth every pain, hardship, and sacrifice a thousand times over.
Tyler is not the child who throws a fit at the zoo and has to be carried out. He is not the child that always has to wear socks. These are just his burdens. His obstacles that he has to fight against for the rest of his life. The things he has to overcome in order to live in our world. It is not his world, but it is the world he has been born into.
Tyler is the child who wants to see his brother succeed. He is the child who laughs at my silliness. He is the child who would rather go without than see his brother go without.
These are the children I am trying to help. The ones that can have all of this goodness become locked inside of them because their own body is rebelling against them. Tyler’s own body will always be his biggest obstacle. But when he overcomes it, he will soar higher and truer than any bird. He will see things and understand things that no one else ever will.
What these children can bring to our world, our communities, our schools is outside of our scope of reality. Their world, their reality, is a different one. I want to see what they see. I want to smell what they smell. I want to touch the way they touch.
I want these children in our world. I want to see them thrive and succeed. I want my world to learn and improve because they brought in goodness and innovation and beauty from a place I would never have been able to visit without them.
And I want to be able to say thank you. I want to be able to show them that we love them. I want to be able to prove to them that all children, all people, are worthy of life, liberty, and the pursuit of happiness.
Please help me release the goodness and innovation and beauty in these children. Help me raise funds for research, awareness, and support to help these children face and conquer their obstacles. Every one of us knows what it feels like to really need a hand to reach out and grab ours in our dark hours. If you have ever reached out and found that hand waiting for you, please consider being that hand for someone today.
My Arkansas 5K Walk Now for Autism Speaks Walk Fund is http://www.walknowforautismspeaks.org/arkansas/rflinchum, and I would be honored to be your conduit for a contribution to Autism Speaks.
Autism Speaks also accepts donations directly at http://www.autismspeaks.org. They have a store in their website you can look through.
Another good store is https://theautismsite.greatergood.com/store/aut/site. Right now they have Sock Monkey Ornaments on sale that are super cute. Each item tells you how much will go to towards helping individuals with autism.
You can also register for http://theautismsite.greatergood.com/clickToGive/aut/home?ThirdPartyClicks=ERU_071213_AUT_m. You can sign up for daily email reminders for easy access each day. Going to this site and clicking the red button will generate funds to help autistic children and it costs NOTHING. You can do it once a month, once a week, once a day.
From the heart of a proud mother of two beautiful boys,
(c) Rachel Flinchum 7/12/2013