Yesterday we had an appointment with ENT (ear, nose and throat doctor). Will needs ear tubes. We are going to call and set up a time to put them in. While we were there the doctor put this little camera up Will's nose and down the back of his throat to see if there was anything getting in the way causing him to not be able to swallow. There was nothing in the way, it all looked good. The therapist seems to think that Will has an oral aversion in the back of his mouth that is causing him to spit out his food. So they are trying to get back in his mouth and desensitize back there (when food gets back there is causes a gag reflex, so Will doesn't put food back there).
I have done something to my back. I was up most of the night because I couldn't get comfortable and was in pain. The pain is right between my shoulder blades, I think that I have a pulled muscle or something. It hurts...bad.
I have had some time to reflect on our weekend at the RTS reunion. I really enjoy going and talking with the other parents and getting there ideas on how to handle issues that come up in our lives but there are aspects of the weekend that completely freak me out. Going to the reunion and seeing the different age groups of children and adults with RTS is like being able to look into your future. It is awesome to see that even at 26 years old our children are pure, innocent and sweet, not jaded or bitter about the hand they have been dealt. It is great to see that our children are able to communicate, though not always in the traditional speaking way. And it is great that the young adults do typical things like roll their eyes at their parents when they get embarrassed by them. But then you are able to see that at 20 something years old, your child could still be Elmo's biggest fan and be perfectly content to sit and watch Sesame Street all day long. Then there are the wheelchairs, food allergies and behavior issues. It can all become very overwhelming. It is overwhelming because we have no idea where Will will fall in the spectrum of RTS and we are left to wonder. There were points during the reunion where I was like "I can totally do this" and then there were points when I was like "Holy crap, I am just not cut out for this".
I am so glad that we went again this year and I am looking forward to going again next year. I have met people that are inspiring and are truly great friends. I guess it is like all things...we must live in the "now" and not worry about the future and things that we can not change.
Sam's Mighty Roar
1 year ago
7 comments:
Myssie,
I have been feeling the same way about the weekend. I cried some tears when I left and I couldn't figure out why until I got home and thought about it. I was overwhelmed at times but I tried to block that part out of my head. Some things freak me out too and I wonder if I will be able to handle these things..To tell you the truth it is very hard on me to meet the young adults with RTS . Not that I didn't enjoy it but its just harder than meeting the younger ones. I have had a lot of mixed feelings these past few days so I understand.
I was a little scared to get a "view" into my future too. I knew I would have trouble with it. Even just reading your post, I have trouble with it. I wasnt there but I get it.
Thanks for sharing your thoughts. I have so enjoyed looking at everyone's photos and felt rather envious that we can't partake in such a gathering. I hadn't thought about that experience of "seeing your future" - that would be hard. Especially as there are no definites so we can't be reassured that this or that will or won't happen. I agree with you about living in the NOW, I find the future a frightening place. I hope your back recovers soon.
Myssie,
The future is what I mostly worry about on a daily basis. Nathan is so dang cute, but will all of the people that look at him and say that he is the cutest baby they have ever seen, say the same thing in 10-15 years when he won't be so cute? Will they still want to be around him if he has behavior problems. Will they still talk to him even if he wont be able to speak to them verbally?
I know day by day is the reality in which we need to live our lives. We don't know what our boys are going to be like. Times have changed, therapies have changed, medicine has changed. I truly believe our boys have more access to treatment today than the current teens and adults had as children.
You are a great mom, Will is amazing and will continue to do amazing things. Thanks for your honest post.
Myssie..well said..Us poor moms of young children with RTS seem to all feel the same way I think ...we're all in this together and I know we'll all do fine...one day at a time and like you said..live in the now..you never know about tomorrow..I don't know about Will..but Logan always has a surprise up his sleeve!!! Hugs..Hopefully we'll get to meet up next year!
I think God gives us glimpses of our futures...then allows us to pull back into our current reality so whatever comes is not a huge shock (like the initial diagnosis is a huge shock!) I think we have all come to terms that our kids' futures will be different from their siblings, and different from each other. I agree it's so hard to consider the future, and living in the now is the best solution. Thanks for sharing.
I with you Myssie! It is so great to have the connection with others but so hard to face the possible reality. Thanks for being so honest...you know we are all thinking it.
Kelly W.
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