I remember in high school seeing the special needs kids and they scared me. I wanted nothing to do with them. They were different then me more of an oddity then even I was and yes I was an oddity in high school.
I swore up and down I would never, ever, ever in a million bazillion years take care of a *kid like that*. Fast forward 30 years and God has blessed me with Megan my step daughter. I really hate that name *step* it seems to downgrade my relationship with Megan. I am Megan's mama. I am her mommy. I am her mom. Megan is the most precious special unexpected gift from God.
I admit that at one point I felt as if God was punishing me for leaving my son after the divorce. It did not matter that I had no choice at the time or a place to live or a job I had a guilt and was angry for a long time.
How could I of ever felt Megan was a punishment? I had to grow up a lot even though I was in my mid 30s when I became Megan's mama. I had to learn that life was never going to be the same or easy but different and boy different sure is a blessing.
Megan is now 19 with multiple disabilities. She is non verbal, incontinent, has a multi seizure disorder called Lennox–Gastaut syndrome, has atypical rett's which is basically a form of autism to make it easy to understand. She has been rated mentally from 3 months to 18 months depending on the task. Megan is 5 feet 2 and around 90 pounds give or take 5 pounds. She has long, beautiful, deep red hair, lovely green eyes, the sweetest mouth that is the shade of light pink lip stick without the lipstick. A perfect heart shape face with an adorable button nose and her face is scattered with angel kisses aka freckles.
Megan may be non verbal but with her eyes she can tell a story. There is no mistaking what she means when those eyes flash. Megan is a fun cuddle bug and hugger. I don't think that there is ever a day that Megan does not make me laugh or smile. I can spend hours watching her sleep with her sweet mouth moving and her eyes in deep sleep. She is simply beautiful to see. Most people when they see us do not realize she is special but learn real fast when Megan lets out her shrieks of joy! I get a kick out of peoples reactions to them. Oh yea she can get shrill and loud!
She also gets a kick out of the shrieking sound and hearing her voice. It is interesting her reactions in an empty room how much fun she has. I learned this when her room was being painted and there was nothing on her walls to buffer the sound. I am talking she would wake up at 3AM just to laugh and yell. It really keeps you on your toes.
At times I will break down and feel sorry for myself and Megan for her not getting to go to the prom, have a bf or even a kiss, for her to get married and all the stuff. If I stop and let it get to me I can get very angry. I can get very mad at people that complain they do not have a 300 dollar dress for prom or can not take a limo, etc. I feel like strangling them and saying *Hey you get to go to prom my daughter can't!* Most people complain about such petty things I wish they could live a day, wait a week, no wait a month with us and see what we live with.
My husband Jason and I had one night for our honeymoon leaving at around 6PM and being home by noon the following day. We had 2 nights in Vegas, one night for a friends wedding, and one night at the beach. Yes that is all we have had without kids. 6 nights since April 1999. I miss having weekend getaways without kids but even when I am away from Megan shopping or what not I worry about her non stop and want to hurry home. To be honest I don't trust anyone but me with her medicine and taking care of her. I know her dad can do it all and he has but I still want to be there for her. I know if I leave town to go on a mini vacation with girlfriends Megan will need me and I wont be there. Talk about being dependant. I am talking me not Megan lol.
I take a lot of pictures of Megan. She gets mad at me but hey I love to share her picture of her with friends. I also want to make sure that I have thousands of pictures of her in case she goes to heaven before me. I want to be able to remember her in all her glory and have pictures to share. She really is a incredible gift.
I have had people including DSHS,friends, and family suggest we place Megan in an institution. This question is like red hot anger to me. I have told any DSHS worker that even starts to ask this question that if they ask me that and want an answer they are welcome to leave my house that placing Megan is not an option to me. Megan stays with me as long as God allows me to care for her. Jason has left this up to me saying if I feel I can not care for her or do not want to care for her we can place her. I would cut off my right arm to keep Megan with me. She is my princess, my punkin butt my mini me. Megan is what makes me laugh when I might be angry enough to spit fire.
OK going to close this blog so it does not get to long.
daph, i love this blog! a person will never understand the stregnth it takes unles they have been through it themselves! a person can only imagine and that will only give them a small piece of what you go through! my children were all three born with whats considered a birth defect!i hate that word!!!! because to me its not a defect, its what makes them who they are... after jagger was born i was so accepting but so sad for him like you get for megan,its only when i realized it could be so much worse i was ok and felt good for him, people are so rude when it comes to children with birthdefects i had one girl say she would have given him to the state because she wouldnt want an imperfect baby, i also had people accuse me of doing drugs during my pregnancy, which anyone who knew me knew it was crap!!! and i also sat there and tryed to think of what i coulda done because i was sure god was punishing me! but he will get to do anything he wants to do and it was then i realized god wasnt punishing me, he knew i could handle it!! thats why you have megan, god knew you could handle it!!! xoxoxoxo,stacy
ReplyDeleteThat is a sweet post Daphne. You love her and she is your daughter! All of that is evident to people. Thanks for sharing this.
ReplyDelete