The same way that I can't relate to their normal birth and healthy baby who got to go home as soon as he was born.I hate that I sometimes feel annoyed with them for complaining about it. I want to open my mouth and say "I wish I had it that easy." But really I don't. I don't want to open my mouth and say that, and I don't wish that I had it that easy. I think our life experiences make us who we are. If anything, what I went through with Skyler, what Chuck went through, what Skyler went through, as made us all stronger. It's made us able to take on the world, we're ready for just about anything that can be thrown at us in regards to his special needs. It's helped me become a stronger mommy, a stronger advocate for children with special needs, a stronger advocate for my son. It made me realize that I know best, that sometimes specialists can be wrong. That when those other moms are freaking out and depressed because they aren't sure they're doing it right, I'm holding my baby thinking I can do this, I've been through worse.
And yet again in church on Sunday I had another mommy to an almost two year old (really nice lady) chatting with me. She says "Oh I remember when she was that little," and began to reminisce about her baby being 6 months old. She stops to ask me "just how old is he again I can't remember." Oh you know.. 16 months. Sometimes I am tempted to just say yeah, he's really advanced for a 6 month old, he can furniture cruise and eat finger foods all by himself! And I hate explaining to people that he doesn't walk on his own yet. I get this question all the time when they find out he's 16 months. "Is he walking yet??" Sometimes I just get frustrated and I want to say something less than nice like "No he doesn't let go of the furniture because he can't see the floor, he can't see 3 feet ahead of him, wouldn't you be just a little bit hesitant to let go if you couldn't see?"
But alas, I smile, I nod, I say "He's furniture cruising! He's doing really well, he can't see very far, but he'll be walking on his own in no time I'm sure." I don't make them feel bad for asking, really they don't have bad intentions, but I get asked these questions so often that I'm starting to feel the need to make him a shirt explaining everything, but he's so small that I wouldn't be able to fit it all on there. I suppose it would have to say something like "My name is Skyler, I'm over a year old, I don't walk yet and I'm visually impaired, any other questions?" Of course I'm sure they'd think of some like "Why is he so small if he's over a year old?" And then there are the people who question whether or not I feed my child. Oh trust me, this kid eats more and better than I do. This morning for breakfast he had 2 bananas and 4 huge strawberries followed (an hour or so after) by a teething cookie, ten ounces of milk and a peanut butter sandwich. Dinner is usually chicken breast and vegetables. Or meat and potatoes. He eats a lot.
Wow, okay it felt good to get all that ranting off my chest. Thanks for putting up with me! Aside from other people annoying me, I'm doing great. Skyler is learning so much and is so happy, life is good. I swear he will be walking on his own soon. He stood on his own the other day for a few seconds. And I had a dream about it last night, I'm pretty sure that's a portent of things to come.
Oh last night my internet went down for a few hours, and this is the result of that:
Yay rainbow pillows! They totally brighten up your black toddler armchair. Plus it took me less than half an hour to make, and that included ironing, cutting, sewing and stuffing.
6 comments:
I think one of the main problems with the pain olympics is that there is always someone who can play it better than you can.
More than that, it doesn't yield the net result, which is to get care, concern and support to someone who needs it.
I think people just like to bond over their stories. I love birth stories, good, bad, and ugly. I listen and imagine how I'd feel if it was me. But I totally get how your experiences are very different and how sometimes you'd have a hard time with that.
As to Sky being little, not walking, etc. I'm REALLY impressed with how well you're handling the comments. I'm like you. I figure most folks don't mean any harm. But comments like that are hard when your baby is doing everything right on the typical schedule. I can't imagine how it would be in your case. You must have the urge to just scream.
My husband would have invented some strange imaginary explanation by now. "He used to grow faster but then faries attacked him and now he just doesn't grow."
I really like the faeries thing, haha maybe I should try that. Or tell them we're waiting for faeries to sneak in at night and sprinkle some growth dust on him.
My Ashley weighed only 18 pounds at age 2 1/2. She didn't learn to walk until she was 4 years old. Today she eats as much as any other teenager, and runs, not walks.
Each of our kiddos have their own internal clock as to when they are going to do what they are destined to do.
Trust me, walking for the first time at age 4 is every bit as sweet as age 1, perhaps even sweeter!
I was just googling SOD when i ran into your blog. I have never just left a comment on anyone's blog that i don't know but i felt that i should on yours. My daughter is 6 years old and has septo optic dysplasia (also legally blind) and also schizencephaly (pretty much a cleft in her brain, she has seizures as a result and extremely low mscle tone inn her left arm, which is pretty much just a "helper" and a weak and tad bit shorter left leg. the cleft is in the motor part of her brain). I was reading this post and just had to tell you that you are so not alone. My daughter did not start walking until she was 18 months old and also she did not talk til then. I remember thinking the same things you are saying. It's hard to explain it to people constantly. It's even harder to not bite their heads off when they ask whats wrong with your childs eyes. I know all the frustrations you are going through. But i was so happy to read your feelings about your sons conditions and how they affect your families life. I too feel immensely blessed to have a special needs child. She has just completely and utterly enriched our lives. She has the sweetest little spirit inside her and it just radiates to everyone involved with her. I would never wish to have her any differently. I beleive that God has gien her these challenges because she can handle them. I dont beleive He ever gives us things we can't handle. Sometimes its hard for me to remember that. I want to protect her and support her but i know that i also need to let her go a little so she can grow and become a strong independent and confident person. It will be a blessing in her life, i just have to help her realize that and realize her potential. I also beleive that it is important for me (and my husband) to remember that God gave us this challenge also for a purpose and that He knew we could handle it. My brother was diagnosed with juvenile diabetes 30 years ago when he was 18 months. My mom is such a support because she understand how hard it is to deal day to day and all the other challenges parents face with these special little children. She often tells me something that i want to share with you. She tells me that God gave me my daughter because there is something only i can give her. He chose me because He knew that i would know what to do, find out what to do, and get what needs to be done for her. She tells me that out of all her children she knows why god gave my daughter to me because i could handle it. I can ahndle all the demands. I can handle all the appointments. I can handle all the heart ahce. I can handle everything life has to throw at her and our family. I know i don't know you but try to remember that you are stonger than you think and you are your childs biggest advocate. Your son is adorable! God will bless him and your family with all the love, support and resources you need!
I am right there with you. I hate those questions. Even though I know people are only trying to show interest and mostly care about me and my boys, I just don't like having to repeat our story over and over. Our lives are different. I am okay with that (on most days).
Hugs to you.
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