Saturday, July 27, 2013

Pouty Lips and Temper Tantrums; Reining In the Terrible Twos

The terrible twos isn't just something special needs parents go through. Unfortunately, this ugly phase is something all toddlers will experience to a certain degree. Some kids may experience them as early as their second year, beginning right after their first birthday, others may be two or three years old. Wendy is almost 22 months old, and the TT’s are in full force!

She has the sweetest little face, so it’s SO HARD to tell her no to anything, especially when she does that pouty little lip and looks up at you with those big, dark blue eyes, but it’s something that has to be done, usually for her safety. Most of the time, I’m telling her no, don’t eat this or no, don’t pull on your feeding tube when she freaks out and throws a huge tantrum, but there are other times when I can simply be changing her diaper or carrying her to another room and she gets mad. And boy does she know how to throw a fit! When a temper tantrum strikes, my sweet, precious Wen turns into a 16lb Tasmanian Devil that I can barely control.

Luckily, for me, this phase won’t last forever and the signing is helping give her a way to communicate, so we’re hoping that will help too. Being almost 2 and nonverbal is difficult. She can’t tell me what she wants, so she slaps me in the face or pulls my hair. It’s a good thing she’s so adorable or she’d probably be getting away with a heck of a lot less!  ;)

Wednesday, July 3, 2013

My child is different and I’m not afraid to shout it from the highest mountain.

Today I was sent a message on Facebook saying things like “Wendy will lead as normal of a life as you let her” and that “no one would know Wendy was special needs if I didn’t point out her differences” and for many reasons these things bothered me. This person, who I will keep nameless for their sake because I know many of Wendy’s followers would love to tell this lady off, sent this message because she said I was making her comment about becoming a grandmother about Wendy and her disabilities, which was not my intention, I just said that my mom had tried to do similar things but didn’t work out because Wendy ended up being a special child and I keep her with me all the time (if this makes sense, I’m trying to be vague as to not totally give this person away).

Did you know that 1 in 5,000 babies are born with an imperforate anus? Probably not, because I didn’t before Wendy was born and it’s probably because nobody talks about it. No one would have ever known Wendy was born without an anus had I not chosen to share it. But I did share it, because if I’m secretive about it, then she will feel like she has a reason to be embarrassed about it and Wendy is perfect in my eyes and God’s. He made her that way, so she should be proud of who and what she is. Other than Wendy’s small size, physically, she looks healthy and most people wouldn’t know that she was born with various birth defects and will face a life of the unknown, but if people comment about her small size, I’ll quickly tell them a little about her and her differently-abled-ness. Hell, I may just bring up something about Wendy and her chromosome disorder just because you mention your healthy grandchild, just like any other may mention that their child did this or that early/late. I have learned to be Wendy’s advocate and I am her voice. I will talk about her disability as much as I can and because of that, thousands of people know about Wendy and pray for her and if you don’t care to hear about it, unfriend me.

As far as me letting her live a normal life…  Am I overprotective? YES! I spent most of my pregnancy not knowing if she was going to live past birth and then 71 excruciating days standing over her in the NICU, so excuse me I keep her close and protect her as much as I can. That doesn’t make me a bad mother, that makes me a caring mother. Would I have treated a “normal” baby like I treat Wendy? I don’t know. I’ll probably never know. All I do know is that I’m doing the best I can with Wendy and what we’ve been given. I also know that I love Wendy with every part of my being and I will do everything in my power to give her the best life I can and if you think that means I’m holding her back, then I thank God that you weren’t given a special child and I was.