Scott and Bridget met in 1993 and were married in 2001. In September of 2003 we welcomed our first miracle, James. 16 months later we brought home our second miracle, Annie. And in October of 2006 our family was complete with miracle #3, Gracie. Rett syndrome entered our lives when Annie was diagnosed on May 19, 2006. This is the life of the MacDonald family as we juggle 3 small children and battle Rett Syndrome until Gods perfect time when we are cured.

Monday, August 1, 2011

Split Personality

Not many people realize this but I have a split personality.  At times I am a wife and mother of 3, other times I am a 6 1/2 year old little girl.  Living a double life is difficult, exhausting and often times just plain overwhelming.  The constant back and forth of each can be confusing to keep up with but it's a life I have been given and must keep up with, my daughter needs me.

There are many people out there like me.   They are easy to spot, they are the moms with a child in a wheelchair at the park that picks them up, struggles to carry them up the ladder and then slides down the slide - because they deserve to play.  It's the mom who is in the grocery store showing their non-verbal child 2 cereal boxes so they can make their own choice for breakfast - because everyone deserves to have a choice.  It's the mom who wasn't able to drop her child off at a birthday party, she had to stay, but smiles as she feeds her daughter cake and helps her daughter to carry a gift to the birthday girl - because she deserves to be included.  The mom who takes her daughter to church and pulls her out of her chair so she can help her dance, then grabs both of her hands so she can clap - because she deserves the right to praise.  It's the mom who invites other children over because her child can't pick up a phone, or dial, or speak - because everyone deserves a friend.  It's the mom who is in the movie theater reaching over to feed her child popcorn because no movie is complete without popcorn along with it.  It's the mom who pulls her child up to her feet at a school assembly because all the other kids are standing.  The mom who translates slurred talk or special looks to others because their child deserves to be heard.  The mom who is helping her child walk, or run, or jump or even sit because she deserves to experience what all the other kids are.  She's the mom that is happily explaining to a group of children why her child wears arm braces or travels in a wheelchair, or has a pacifier or can't speak because her child deserves to be understood and accepted - (even though she really feels like grabbing her child and running, crying and hiding until all of the questions go away.)

Us, "split personalities", aren't on Jerry Springer because we don't lead exciting or flamboyant lives.  we just spend our days putting ourselves in our childrens shoes and trying to think, act and do what our kids aren't able to.  We are the ones that are watching other kids to see what they play with, how they talk, dress, and wear their hair, so we can catch a glimpse of what our own child might like, do, say and look like if they were able to voice their opinions.  It's not easy to lead a double life.  You must keep a smile on your face at all times because there's no telling when you have to change into a 61/2 year old again (and we all know 6 1/2 year olds are always smiling).

Most of the time our evenings leave us exhausted, we change back into a parent and have to administer meds, hook up vents and tube feedings, snuggle, bath, dress, read stories and tuck in.  Then we wait, at this point we aren't sure what we are, caught between the 2 personalities.  At times we can be the mother that checks in on our kiddos, prays over them and heads to work or to sleep.  Other times we need to turn into a 6 1/2 year old girl and play, watch TV, or read until our child can settle to sleep.  When morning comes we wake knowing that we need to fulfill the lives of 2 different people again and that we only have 24 hours to accomplish that.

This post is dedicated to all of my split personality friends, our lives are difficult but are much easier when we lean on eachother.  Keep fighting the good fight my friends, your daughter loves and thanks you for it!

Ps. if you'd like to meet some of my split personality friends just check out the "we don't walk alone" list on the right!
Pps.  I know there are many special families out there that have a male child with special needs, I also know that there are many, many special daddy's out there that lead double lives as well.  I didn't mean to exclude you, I just write about my own experiences.  Kudos and blessings to all of you too!!!

7 comments:

  1. wow bridget! so well said. i just had to explain the arm braces today to a little girl about Avery's age and believe me I wish I could have just pretended I didnt hear her!

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  2. Beautifully said. My 7-year-old daughter also has Rett and I have done all of the things that you described. It's like you took the words right out of my mouth (although your version is much more eloquent!). Your daughter is lucky to have a mom who does whatever she can to give her the most "normal" life possible.

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  3. I am so touched by this post. You really have a gift for putting to words how us parents of our "special" children feel. Many of these things I just assumed no one else felt or thought but me! Thanks for sharing this!!

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  4. Thanks for a wonderful post! I didn't realize until I read this that this is so often how I feel. I am constantly trying to put myself in Nora's shoes to understand her and see what she would want...

    Thanks!
    Kristy
    We've got a blog, but I don't update it often enough you're welcome to check it out and put it on your list if you want.

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  5. Beautifully written, I have a great niece w/ Retts and her amazing parents adopted another little girl with Retts. The girls, and Nate and Jen, their mom & dad, are awesome - like you : )

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  6. Hello Bridget,
    My name is Whitney and I saw this post on Brooklyn Butler's page. I grew up in the same town as Brooklyn's mom, and her grandmother, Mrs. Macnamara was one of my elementary school teachers, so occassionally I look at Brooklyn's page. I am currently an Occupational therapy assistant and am working on my Master's degree to become an Occupational therapist. I have an assignment to do and our goal is to educate legislators on pediatric occupational therapy and to convince them to stop making cuts to SCHIP and Medicaid for children's OT services. I was wondering if I could use words from this post in an inspirational video for part of our assignment? I would be more than happy to send you the video before we turn it in so that you could make changes if you would like. Thank you so much for your time and your kind words and I LOVE this post. I know you wrote it from the viewpoint of a mother, but it is also what occupational therapy should be about. Please email me at wgar88@yahoo.com and again, thank you!

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  7. Oh goodness, I can so relate to what you write! It's exhausting isn't it...but so worth it for our girls. BTW: I was reading through your posts and catching up on your blog. I so understand the worry post you posted after this one. Probably why I'm reading blogs at 2am...another sleepless night. Sigh. Hope you have a good week..thanks for sharing your heart! I can so relate to what you write.

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