Hello Everybody,
It's been a long while since I've posted anything, and today is probably not the day I should break that streak. I am so tired today. Mentally, emotionally tired. exhausted is a better word. We've dealt with a lot of big stuff lately. -non tulip related. but never the less, big stuff. I am worn out and ornery and all my patience and understanding is gone. I'm in 'one of those moods'.
A member of our family - with good intentions- excitedly told me about a special needs play that she and her husband had been to. As they say it: his cousin "is.....(awkward pause)....special needs." This cousin is much older than they are and I don't believe that they know what his issues are. They proceeded to describe how 'special' the whole performance was and how they just cried. I'm chalking it up to my mood, but it really bothered me the way they talked about this special cousin. There was something condescending about it. Does anyone know what I mean? sort of like they don't really get it, but they know how they're supposed to act about it. Like they don't really even know their cousin, but will go watch him because they are such good people. I had a hard time listening to them. And while I understood perfectly why they brought it up with me, I still kept wondering in the back of my head "Why are you telling me this?"
Several days later, I was tending a neighbor girl. M.K. happened to be home from school that day. This girl usually plays with A, not M.K. but, they wanted to play on our new Wii fit. while I was trying to help M.K. get situated, this girl says, "I bet M.K. can't even do that." I didn't think much of it and calmly told her that M.K. can do some things with help. The little girl was speaking totally innocently as any child would. She said "Remember the other day when I saw you at my school, and there was a boy with me? Well, I told him that M.K. can't walk because she's handicapped, and that I feel sad for her. He said he felt sad for her too." I know she's just a child. I know she's being sincere and probably just repeating what she's heard from other grown ups. but I hated it. I just hated hearing that. I told her that M.K. can do lots of things and that she's even learning to walk, and that she's very happy - there's no need for anyone to feel sad for her....I was angry. I still kind of am.
I hear things like this fairly regularly. Most the time I don't care. They don't bother me. People just don't get. I don't expect them to. But sometimes I go through phases, or get in moods or something where those kinds of comments really bother me. Sometimes, I just don't like other people. Do any of you get like that?
I know I'll get over it like I always do. Then I'll feel bad for thinking so rudely about all the people with good intentions. but I'm not perfect. I still have the moments where I'm just a brat about it all. Can anyone else relate?
Tiptoemama@gmail.com
Mother to a five year old daughter who has cerebral palsy.
happyinholland@gmail.com
Mother to a six year old boy with Autism.
nevilleslosttoad@mstarmetro.net
Mother to a four year old boy who is currently undiagnosed
lukerin4@hotmail.com
Mother of an 18 month old girl who has schizoencephaly
ima-mom@hotmail.com
mother to two children with Asperger's and sensory issues.
www.specialneedsmom.com
mother of two girls with complex 1 mitochondrial disease
sumGC4me@gmail.com
Mother to a 2 year old boy born with gastroschisis & brain damage
lizsbmom@gmail.com
mother of a two year old girl who has spina bifida
nancy.brown05@gmail.com
mother of a three year old boy with cerebral palsy, hydrocephalus and low vision.
vanandlori@gmail.com
Mother of two micro-preemie girls born 4 years apart.
jesscaandrews@aol.com
Mother to a one year old boy who has chronic lung disease.
christensen.melissa@ymail.com
Mother to a six year boy with autism, and a 19 mo. old boy who is undiagnosed
kinhelpingkids@yahoo.com
mother to a 4 yr old with PVL,CP,CVI,SD and a 3 yr old with FAE & SID
gizmoisms@yahoo.com
Mother to a 4 yr old boy with CP, seizure disorder & hearing loss
angelcare1@charter.net
Mother to several adopted daughters who all have cerebral palsy
Annette4Clay@aol.com
Mother of a 24 year old boy who has cerebral palsy
Abby
mother of a daughter with 'short gut'
mother to three boys with autism, PDD-NOS, ADHD, and one undiagnosed.
hayngrl101@gmail.com
Mother of a daughter who has DiGeorge Syndrome
www.jbjohnsen.blogspot.com
mother to a 3 yr. old boy with PDD-NOS
lsmckay@q.com
Mother to a little boy at risk for PDD-NOS
7 comments:
I totally can relate to days like that! Some days I fly through the day without a second thought as to the special challenges we have in our family. Then some days... like one last week for me.... you just want to scream and yell and tell anyone who walks by to leave you alone. I have been getting more and more comments on my youngest because of his feeding tube. It is an NG one still so it is very obvious there is something going on with him. I am tired of the looks and the people who try not to look... (you know those kind). Some times I just wish with all my heart that people didn't see anything other than a sweet boy who probably tries harder than anyone else around him to live a 'normal' life. It's a good thing we get a brand new start to each new day, huh?
Love ya girl! We all have those days/weeks/months so don't feel bad about it. Everyone is entitled to a bad streak every now and then. You'll pull through! Hang in there--I'm sending happy vibes your way!
I COMPLETELY understand! Sometimes really sweet, well intentioned people make me so angry, and then I feel like a horrible person for feeling that way about someone who was just trying to be nice! Like the other day, a man at the mall saw my daughter walking along with her walker, and she was happy and having fun, and he came up to me to tell me how sad it made him to see people like her. It bothered me so much - there was nothing sad about her, she was being absolutely adorable and sweet and funny, and all he saw was her walker and braces.
I too can relate to everything you said! I've been in kind of a funk lately and felt those same emotions as I was reading your post. Wish I could give you a big hug right now.
Oh Mama, don't feel bad. We all have these days. I think the hardest thing is the "feeling sad" for your child. When we look at our children we feel love and pride. Why should people feel sad when they see them? I always just remind people that JT is a very happy boy. The sad thing is that people really mean well by saying that. Hang in there, the "funk" will end.
Your post hits home for me. People, even our own families, see the disability first and sometimes, never get past that to recognize our children as just that- children.
I was talking to an old friend and she was asking about our child. My little girl was an NG tube baby also and so the friend, Heidi, made some remark about how she remembered me tube feeding her and she just "hurt so see it" and she just felt so bad.
The thing people don't realize is that I LOVE my tubes. THey are what helped my child to survive and not starve to death. They don't see the fact that our kids are walking with braces/walkers, but they are WALKING.
That is why this blog is so freakin' great. We know what its like. We recogize that our own respective struggles are different, but still the same. Everything is relative... we each have our own unique situations and children and diagnoses. But we understand what it means to celebrate (and sometimes mourn)the wonderful lives and victories that our children have.
P.S. And I just wanna throw it out there that people (forgive the sweeping generalization) can't fathom the notion that our kids, who are not typical healthy kids, can still be happy despite their limitations.
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