"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't take a special family, it makes a special family."
I'm not sure that the heavens communicate via Facebook, but I read this quote there this morning and it felt heavensent. (If anyone happens to know the author, I would be glad to give credit where credit is due.)
It has been a constant struggle for me to feel that my daughter is the "blessing" that everyone is so fond of saying she is. Most days I would not trade her for all of the treasures on the earth, but then there are days where, if you offered, I wouldn't blink.
Sophia has a chromosomal disorder known as Angelman syndrome. She was a difficult baby, began missing those all important milestones, and was finally diagnosed just before she turned two.
She is now five, and it's hard to feel blessed when I have to keep all the cabinets in the house locked because I don't want her to eat an entire box of cereal in one sitting, break dishes, drink carpet cleaner or dump a whole bag of flour all over the floor again; when at any given moment a poopy diaper could become fingerpaint; when I have to keep the front door locked from both sides and hide the key, because not only does she try to escape and run down the street, but she can use the key to open the deadbolt and make her escape; when my blocking skills rival those of Chuck Norris because I have been smacked in the head countless times; when I have to smile apologetically at strangers in public places because she's shrieking at the top of her lungs just for the joy if it; when my house, my marriage, my other children and even my needs get pushed aside because her needs come first.
And yet in spite of, or more accurately because of the challenges that I face with Sophia, I feel a firm and fervent bond with her. When I look into her sparkling blue eyes, I can feel her pleading with me, placing all of her trust in me to care for her and protect her. Beyond that I can feel the trust my Heavenly Father has put in me to care for one of His most precious spirits during this brief sojourn on earth.
So while our house resembles a zoo exhibit more often than the home of a special family, I do feel that strength and support coming from above to get us through each new challenge and each challenging day.
I love you, Sophia.
13 comments:
All I can say is this is poetic. Have you thought about writing a book about your experiences? What an amazing start!!!!!!!!
I admire your strength, Julie. On the days when I am at my wits end just to make my own life come together in the right ways, at the right times, I think of all of the other things that I could have going on. I do not have a family to manage - although I hope for one with all my might. I do not have children to wrangle or a husband to feed...and perhaps, my life is quite simple in some moments because of this. I have a great respect for someone like you who gets it all done and still manages the extra effort for a child with special needs. There is the saying that God will never give us more than we can handle. I personally have questioned that more than once - but know that in the end, I am a strong woman who can do anything I set my mind to. And certainly if you can do it, I can too! :) Sometimes we just need the experiences and the support of a good friend.
(((((((Julie)))))))) This mommy spider pales in comparison to the love and patience you posses towards your special family. Its not special because of Sophia, its special because of YOU!
You, my friend, are amazing. I love you.
Wow, your family is really growing up (picture comment). Thanks for taking time to post and give us pause for thought. You are amazing and don't you forget it!
you are so sweet- and such a good mommy <3
Sigh, I love this post. Everyone is always so impressed because there is so much to handle, but they don't see the days you wake up and lay in bed for a minute wishing that someone else could take over your life for just a day. You have to get up anyway because you know there is no one else. They don't see the days where your patience is spent and you are by no means the patient mom everyone envisions. They don't see your other children having to fend for themselves because you are so wrapped up with the one who needs you the most. It definitely makes everyone stronger, but it is exhausting and at times depressing. Sometimes you can't help but wonder what life would be like if things were just a little different.
I love you. Thanks for being strong for me on days when I can't take it anymore. I hope that I do the same for you in return. I love you, too, Sophia. Oh snap. I'd better go stop her from burning the house down! ;) Just kidding.
Your sweet, sweet words (and rocky road) bring back memories for me . . . like those from just yesterday! Raising a "special" child is a gift . . .
as is pain . . .
but at day's end I wouldn't trade with anyone in the whole universe (but maybe, just maybe someone else could sit in for me so I can change my mind in peace).
Beautifully written, eloquently posed, absolutely true. Thank you for this gift of knowing and telling and returning to it in love.
With Love,
From One Who Knows
Thank you all so much for the sweet and supportive comments. You have filled my cup to overflowing, and I truly appreciate it. :)
She is an angel and I admire you EVERYDAY for all that you are learning and being challenged with. You are such a valiant woman, even if you do have red fingernail polish on the carpet!
That was amazing. You do have a beautiful girl. xoxo
How could I miss your birthday? I am a terrible friend!
I loved reading your thoughts...seriously, we could all use that type of attitude. I think we all have a hard time seeing everything for what it COULD be.
You are a beautiful writer...we all think so.
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