Here is the truth. Aubrey is 2 years old. And I am still in denial about her special needs. Yes, I've researched information about her suspected diagnosis...but there is it. To me it is still a "suspected" diagnosis. Even though all signs (except the genetic test which is coming this summer) point to Sotos Syndrome. I read, I learn, I ask questions. And then I put all of the information in my back pocket for another day and time.
I tell myself that I do this because I don't want to "categorize" Aubrey, or have lowered expectations for her. But the real truth is that it is easier to push it aside for another day than it is to deal with right now. So I deal with the here and now. Walking, braces, speech therapy, directed play, muscle tone, sensory integration. I work in the moment and hope that it is enough.
Sometimes I find myself pretending that people don't notice Aubrey's differences. That they don't see the string of drool streaming out of her mouth onto her drool stained shirt. They don't know it is the second shirt she wore that day. They don't know that she isn't giving them the silent treatment, she just can't talk. They don't notice the throaty guttural sounds she makes in place of words, or the hand flapping she does out of excitement or frustration. Sometimes I think that people don't notice those things, not because I am embarrassed by them but because they are so normal to me that I often don't notice them myself.
But every once in a while...it all comes spilling in. My heart and mind are flooded with the truth and reality of this life. And for all it's beauty and joy, it is a complicated, unexpected, and trying life. It is overwhelming.
And even though I know we all have our trials in this life...sometimes I just need to say that this is hard for me.
It is hard.
8 comments:
I so respect your heart and how you open up about your trials. It helps me open up about mine too. Olivia is only one month old but I am feeling extremely overwhelmed too. Today I felt awful because I thought for a moment "if I hadn't had her I would have so much more freedom". Isn't that mean? But I am human, and so are you, and it's ok to be overwhelmed once in a while. You are loved and have friends and family who can help carry the load once in a while, so you can take a break and breath. really, let me know if you ever want me to watch her for a little while ok?
hugs to you! many hugs!
Kika*
You are a great strength to me as I read your blog. You are an amazing woman. The Lord knows each individual and knows the trials that they can handle in this life. I believe that those that are tried hard are the most amazing people because the Lord knows they can handle it. I hope that makes sense to you. Just know that the Lord is constantly watching over you and your family and is helping you along your way.
Thank you for being a wonderful example of how to be a loving mother.
Thanks for being so honest Megan. Your honesty helps everyone reading your blog because I think everyone has something that is hard. Our bishop once said that he basically assumes that everyone is going through a major life crisis at any given moment because 9 times out of 10, that's the more correct assumption. So there is a good chance people don't notice what you notice because they are all so consumed with their own hard things. We can't wait to come and see you guys in June.
Megan you are so amazing to tell us how you feel. You put into beautiful words what all of us moms feel at some time or other in different ways. Thank you for opening our eyes and touching our hearts. You are an amazing mom. You have been blessed with Aubrey, and she has truly been blessed with you and Matt as her parents. You're doing a great job and you inspire all of us!
I feel bad for the people who only see the things about Aubrey that you mentioned, and not the sweet spirit that she is. Those people are missing out. I truly feel honored to have been allowed to be a small part of her life through her first nursery days. There was a definite difference in nursery when she was there compared to when she wasn't. I never could pinpoint what it was, but months after you guys moved I finally figured it out - it was increased love. She brought SUCH a spirit into our little classroom. The kids were always more obedient, more loving when she was around. It was amazing to see how much they loved her and how much she loved them in return. It really was humbling to have such spiritual moments in our little nursery class that I've never felt anywhere else!
I am sorry that you are feeling discouraged. I know that difficulties in our life can be frustrating and sometimes we feel alone. Try and look at the good, she is a beautiful little girl, she has a happy spirit, and she loves her parents. I know life throws curve balls and sometimes we just have to swing through it
Ditto to what everyone else wrote. I don't really know you, I know. But you impress me. You are strong, and your strength radiates in what you write. And your daughter is a beautiful girl who has come a long way from where she was when I first started reading your blog. Thanks for allowing me this glimpse into your life -- for not minding that I'm a complete stranger ;).
Megan-
I love your honesty. Life is hard and it's easier to cope with the hard when we can let it out, write it out, talk it out, whatever works. You are a good mom and Heavenly Father must think so too to have trusted you with such a special girly to take care of.
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