Thursday, April 10, 2008
in need of grace
I think I forget, usually, that Ella is any different. It was easy the first year to ignore her differences, because other kids her age weren't doing that much more than she was, it's getting harder to ignore.
I am looking into joining a gym and thanks to my friend Catherine I've been going to a gym for the last few days. The first day my wonderful mother-in-law watched both kids so that I could workout. Yesterday, however, I needed to take both of the kids and leave them in the gym childcare while I went to yoga class...bigger ordeal than I had imagined. I tried to prepare the childcare that Ella would need a padded space and a little extra attention because of her physical limitations and tendency to "drop" to the ground without protecting herself. They informed me that they would do whatever they could to try and accommodate our situation. When we actually arrived at the gym to drop the kids off it was almost like we were a total inconvenience. I realized that most places are not set up for a child like Ella. It's not that they aren't "handicapped accessible", it's just that they can't justify the needs of a physically challenged kid. My heart broke as I watched the teachers exchange glances as a mat was brought in for Ella and as the director explained that she would need to be watched very closely. I started to tear up and get emotional as I held my precious, happy, beautiful little girl and realized that this would be the first of many times that her handicap would be an inconvenience to other people. I started to feel tears run down my cheeks as I held her closer and prayed that she would never know the sighs and looks that people send as they realize that they will have to adjust to make sure Ella can participate. Needless to say I probably won't be joining the gym. However, I don't know what I'm going to do.
It's not just the gym, it is the simple things that make it so hard. Ella has to be in her chair, not in a highchair at restaurants. She has to be strolled everywhere, I can't just put her on my hip or let her down to walk. She is fairly mobile, but only in her safe-place of her "padded cell". It's too hard for her to maneuver anywhere else. Even at my parents house yesterday I watched her fall over a few times as my sister and I gasped...you can't let her out of your site for a moment...unlike a typical toddler who "gets into stuff"...she has no idea of physical harm. People are quick to remind me of how far we've come in the last two years, but what they fail to realize is that her desire to be mobile is sometimes more harmful than a praise. I'm SO grateful that Ella is improving and sitting and trying to stand, but I also know the reality that she struggles to safely do anything. I'm just frustrated and heartbroken and trying to bathe in the grace that our Lord has for me...I'm just having a hard time feeling it today.
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12 comments:
You are an amazing mommy with an amazing little girl!
I can't imagine what you are going through. I know how my heart stops when I can see that Sam or Thomas is about to fall and I can't get to them fast enough (like last night when Thomas was in our bed -- because of the terrible storm -- and insisted on sleeping across the bed, at the foot to boot, and simply rolled over and off the bed!) I wish I could say -- Oh, A, don't worry, she'll grow out of this phase, but I know I can't because I have no clue. I can tell you that He will continue to provide you with all the strength you and she need to handle this and anything else that is handed to you. You are doing such an amazing job. Remember that.
Love you
Deb
Sweet Andrea, I do understand. Having been where you are, I wish that I had a way to make the path easier for you, but I don't. I do know that you'll be a strong and loving advocate for Ella. Sometimes you may want to give up on the human race, but then there'll be people who will surprise you and restore your faith in human nature. Ella will find acceptance in those with good hearts. As for the rest, who needs 'em??
It's always good to get your thought and emotions out there. I want to share something.....
I don't have a child with special needs but I grew up as the sibling to a disabled brother and I know the feeling of watching everyone give the "look" or the "glance" and how hurtful it is......unfortunately I still experience it today even though he is doing soooo well. He ALWAYS shakes with his right hand (which is the proper thing to do) and I see people look down to see why it feels so strange......it is because of the paralysis that covers the right side of his body from a stroke when he was just a newborn.....it goes from his head all the way down to his feet. You learn to cope and you learn to be that one person who NEVER treats them as different.....when my brother starts one of his rants, I know that it's just because his poor brain suffered such damage as an infant. BUT, it is no different than the "bad habits" or "quirks" that some of my friends, family, etc. have. That is what makes him different and I appreciate it, even though some people see it as not "normal".
You are an amazing mother to two children and you are facing difficult situations. You WILL have bad days and good days and you WILL get through all of them. But feeling what you are feeling is totally legitimate. No one can tell you how to feel and you are doing an amazing job!!!
I am crying with you right now as I read this. It breaks my heart that people are like that, but as Debbie said, there are some that will utterly amaze you. The good news is that Ella is still happy and I'm sure she loves her "padded cell" more than you will know.
Bathe in his grace, for it is sufficient for what you need. I love you, sister!
Andrea,
My heart ache's for you and can only imagine what it must feel like when you get those looks from other people who are so heartless or just don't understand. I know how it makes me sad for my kids when someone has said or done something hurtful to them....and they can stand up for themselves. You know God never gives us more than we can handle.....which I know sometimes is not much of a comfort, but it's the truth. He has something great planned for Ella and your family!!!
Keep up the wonderful job you are doing as a wife and mommmy to those precious little ones :)
Love,
Dori
my heart broke reading this girl.
I am so glad you posted this. It helps us SN momma's see that we are not alone.
I'm with you..I would not join the gym. I would want Ella to have the best. Your a great momma.
A
Ella is so beautiful, you guys are amazing together. What a wonderful team! It won't matter what others do, it will only matter what face her mommy is making, and with that she will feel all the love and support you have for her.
andrea, you listen to kathy g! i think i admire her almost than anyone else on this earth - i know she isn't perfect :) and i know she struggles but what a wonderful example of how to do what you two are doing! i know she would even love for you to come out to the country to visit and bring ella! david was best man at jonathan's wedding - how 'bout that!!! :) j
I cried when I read this. It's not b/c I pitty you, but because your heart hurts for your child any time they are rejected by society regardless of the situation. Court just sent this t me and I thought it was so true: "having children is like letting your heart walk around outside your body". It totally is! Your emotions are those of a Mom who will stop at nothing to protect her child. I'm sorry you felt this way and will continue to pray for "ignorance" in people to go away. I just wanted you to know that if you ever need to go to a Saturday class, JUST CALL ME!!! You know I love that little girl as much as my own and would be so proud to watch her and little William!!
Andrea, I'm so sorry you have to endure those looks and glances. On a different subject, I've gotten those same looks. They make me want to scream, so I know how you must feel when you know they're around your baby girl.
You are a wonderful mom sweet friend! The Lord handpicked you for Ella...nobody in this world could do it better. Nobody else was chosen! You have a beautiful daughter, who is special in a million ways that many others are not. And I'm so very grateful to have come to know you and your sweet family!
You might not feel it, but take solace in knowing that you and your daughter bless us in so many ways. We love you!
XOXOXO,
Andi
I was recalling this story to Russ this weekend at Breadwinners b/c a teenage boy with CP was wheeled in and folks were annoyed to move their chairs to let him by. I started crying right then telling your story...and I think that's a little of what your purpose might be: to shed light from your perspective on how the human race needs to love a little more. And who, once they get to know Ella, has not been overwhelmed with fierce love for her?
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