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Post by sd112170 on Sept 29, 2010 18:05:10 GMT -5
::)John had yet another test today. Wasn't anything serious so I wasn't going to post, with everything else going on here. He had his ABR for hearing. They wanted to make sure his hasn't had anymore hearing loss. All was the same. But I go through the spill of allergies to latex and adhesive. My poor child. I was expecting to see the red spots on his head and behind his ears. But they taped his eyes shut. We had to be there at 6 am. That was bad enough, but when we got home, I put him down. Didn't feel like eating. He never went to sleep. So in an hour I went in and his eyes were swollen shut. You could see where the tape was, and looked like a horn coming out of his forehead. They just tore the goop off behind his ears and he will have a huge scab behind one of them. I may be talking out of exhaustion, but I wish I could take the ds away. :'(I am so tired of John having to go through this. I know a typical child could be going through the same things. But they dont get stared at and ignored like John does. And the sad thing is it comes from adults ! And it passes down to their child. I don't want my sweet loving child, who loves children to be treated like that all of his life. I feel like the only place we fit in is at therapy. I just want the ds to go away. I love my child, that is what he is . A child! It just isn't fair for him! I am hurt and haven't asked why in a long time. Please tell me I am not the only mother out there who feels like this. I grieve for him, me and the people who live inside the box. Broken hearted Mom
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Post by Chris on Sept 29, 2010 18:48:23 GMT -5
You are not a horrible mother. None of us want to see our kids suffer and it is totally understandable that you would be upset today. My DH says he wouldn't take Sarah's Ds away even if he could. I'm not quite there yet. Now that Sarah is older, she is finally getting ignored at times. I noticed when we go to parades sometimes people pass her by when they are handing out candy or other things. It really hurts my heart but she doesn't really even notice. I must say that we have far more positive interactions when we are in public. Kids are generally kind to her even when she isn't being nice to them. We can't take the Ds away so we just have to be the best advocates we can be for our kids. Sounds like the hospital was rather negligent if they already knew about his latex and adhesive allergies. Breathe! Chris
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Post by logansmom on Sept 29, 2010 19:47:11 GMT -5
I'm so sorry. One thought about his allergies . . . you may consider taking pictures of the sores and swollen eyes. The next time he goes in, take the pictures with you and show them to the doctors and nurses while you are explaining his allergies. As they say, "a picture is worth a thousand words." Hugs, Kim
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Post by sd112170 on Sept 29, 2010 19:56:28 GMT -5
I have already took pics. Also called the office. They will see what happened. I am just emotional and hurt at how it all went down. And one of the parents just allow her child behave in a manner that wasnt befitting. I have had John away from everything because of his immune system and this is the first time I have really noticed inappropriate behavior. So now I have to learn to deal with it the right way instead of how I wanted to. LOL They don't really want to P&%% me off about my son.
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Post by faithhope on Sept 29, 2010 20:10:52 GMT -5
(((((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))) Oh honey my heart is broken too for you and for John, that is just dispicable!!!! These are the kind of things that bring me to my knees when I realize how God loves us all, even the jerks. All I want to do is make them suffer! I wish I knew what to say. Sounds like alot of good loving wisdom as always from fellow unomas. Just remember you are NEVER alone. We are all here for you and your pain is ours. You just do what you do best, Love that angel that you were blessed with.
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Post by carolyn on Sept 29, 2010 21:10:48 GMT -5
As a mom to another guy named John, I can tell you that you are not a horrible mother. sometimes I think we just love our kids so much we want to whole world to notice how wonderful they are. We feel hurt when our kids are so loving and accepting but the acceptance and love is not always returned. You would be mad at the hospital no matter which child of yours was not treated in the proper manner. But we spend so much time and engery on our DS kids we just want a little kindess returned. My John is 11, and I still wish his DS would go away, not for me, but for him. I think that is so normal. We do the best we can though, and make our own sunshine. Hope you feel better tomorrow, sounds like today was a rough one.
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Post by Emilysmom on Sept 30, 2010 5:57:54 GMT -5
Goodness NO, you're not a horrible mother! ! ! Stacy, you've been through so so much with your precious little guy in the past year.....more than I have ever had to endure! I think it would be unusual if you didn't feel like saying "enough"!! And, to go through what you did yesterday with him is such a shame. I'm sorry that both of you had such a bad experience. Please know that we DO care about John and about you and all you're going through. Susan
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Post by mg12061 on Sept 30, 2010 8:25:30 GMT -5
You are a wonderful mom!!! How do I know? You care so much for your son and do everything you can to make a better life for him. I understand your feelings. I have always said that the hardest thing for me having a child with DS ( and a list of other issues) is, I miss "just being a mom" Instead I have to play the part of therapist, teacher, Doctor. and advocate. My heart aches for Kathleen when I stop and think about all she has to deal with like going to about 7 specialists no less than once a year. I think of how much harder she works to do everything yet still isn't independant because of her strokes. Our most recent medical addition is botox injections every few months. BUT guess what? This is all a non issue when I see Kathleen's smile and hear her laugh and see her learning something brand new. She is who she is because she has DS and her other health issues, and I love the person she is growing into. She has made me a much better person. She's in 7th grade and has been mainstreamed since kindergarten. This has made a world of difference in her social life. Young children are pretty caring and curious. They learned so much about Kathleen and now in 7th grade she still has those friends who watch out for her and go out of their way still to sit with her at lunch and say hello in the hallways. There are more accepting and caring people out there than the ignorant ones. I think what I'm trying to say is we as moms will always want to make life easier for our kids and want a perfect life for them, typical or disabled. But a "perfect" easy life doesn't make a person better or stronger so I try to see our struggles and a way to mold our whole family not just Kathleen into stronger more caring people. because of her I've seen both the best on people and the worst. Definetly more of the best in people. Remember though I'm years ahead of you... OK sorry for rambling on I hope some of it made sense. Your an amazing mom and John is very lucky ot have you. Mary Grace
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Post by sd112170 on Sept 30, 2010 12:03:18 GMT -5
Thanks everyone. I do feel better today. John is John, because of the DS. I love him sooo much. I just want to know he will be ok.....one day when we aren't here. I guess we do run into som Jerks. But today, therapy was wonderful. They say. ( he is a little over excited when I am there). But to make my day, there is a little boy. Don't really know for sure, but I think he has autism. You can tell he likes John, and John adores him. He came in this morning and John walked to him and gave him the biggest hug, almost knocking him down. ( he hasn't quite learned bounderies.) The little boy likes him but freezes up when he is touched. It was just a sweet moment for me and John, though I dont know if the boy liked it to much LOL. But I do know a friendship is forming and it melts my heart.
Tomorrow is another travel day. Oncologist check up......so I hope John naps good. Thanks for making me feel better. He does make our family a better one because of the DS. It gets clouded by the jerks sometimes.
Stacy
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Post by mg12061 on Sept 30, 2010 13:04:36 GMT -5
I'm so glad your feeling better today. Your right sometimes it's just other peoples ignorance that gets in the way. But you'll see, you and John will one by one change other peoples lives along the way. Not all the ignorant people are unteachable... Mary Grace
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Post by kg91207 on Sept 30, 2010 21:55:28 GMT -5
I was just telling my husband what they did and oh man! He said that would NOT happen to his little girl!! hee hee. But you are not a horrible mom. If you DIDN'T have these feelings, then you would be a horrible mom!!! Something we learned in a parent support group we've gone to is, you are going to continue going through the grieving process-not just when you learn about the diagnosis, but as they grow, as they reach new milestones, as you deal with new doctors/therapists/specialists...think about it...our kids probably aren't going to get a driver's license at 16...but some of their friends will...and we'll have to deal with that. I'm just glad I have 13 years to prep for that!! But somedays it really hits me that Kaelyn has DS...but most days she is just Kaelyn!!! She doesn't know any different! I love it because now when we're out and she sees other kids, she'll say hi to them. And they say hi back! I love it.
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Post by Googsmom aka Jennifer on Oct 4, 2010 9:47:15 GMT -5
This is simple. YOU ARE A WONDERFUL MOMMA!!!!!!!!! Period!!!
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Post by char on Oct 4, 2010 12:21:45 GMT -5
As I sit here reading what has been said, I can only echo that you are a wonderful mom. I have tears streaming down my cheeks just thinking of the swollen eyes and the sore spots. One would think that the word, "allergies" would ring a bell.
I guess until someone makes ignorance illegal, we'll just have to learn how to like teaching them.
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Post by Myria on Oct 4, 2010 14:59:40 GMT -5
poor John! i hope he is feeling better and the sore spots are all gone today! You are an awesome Mommy! John knows it and so do all of us! (((HUGS))))
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Post by sd112170 on Oct 5, 2010 8:58:13 GMT -5
Believe it or not, he still has the sores behind his ears and forehead. That gives you a pic of how bad it was. But he is better. Thanks for all of the comments. It makes me feel better.
Stacy
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