.5.11.17.
"You do not owe me for being attentive to your needs, by making you a priority. That is my contract with you regardless of circumstance." – Jaycee Kemp
I can not express to you how real and brutally honest this is for me today. I am in a place in my life I never imagined I would be in. Call it naive. Call it oblivious. Whatever. I never in a million years thought I would be "THIS" mom. Honestly, I never gave much thought to what it would be like to be a mom of a kid that "has something wrong with it"; because there is nothing wrong with my CHILD. She is beautifully and perfectly made. But besides that, I never stopped to wonder what a mom must feel like to have a kid with a "disability". How different it is then having a child who is healthy, can run and play with his/her friends and you don't worry about if those kids are sick, or if they've been around a kid that is. To have a kid that doesn't have to see the doctors every three months of an MRI of her brain, to see if the monster that tried to kill her is growing again. {and now we are almost at weekly, and for sure, bi-weekly appointments. not to mention all the therapy appointments and such in between} I never stopped to think about how lonely and isolating it could be to have a child with extra needs. But now that I am here, I am THAT Mom, I am proud! And there is no way I would have it any other way. You see, I live in a magical and special world.
I know love in its purest form. It's rawest form. And a love so unbelievably UNCONDITIONAL you wouldn't believe me even if I could describe it. I have felt the deepest pains, the ones that burn in your bones. Pain at absolutely paralyzes you. For hours and hours. And all you can do is lie there, almost lifeless, and sob. And moan. Begging for something, anything really. However, {and this is the magical part} because I know what that pain is, because I have lived that and THROUGH that; I know joy. I know how to be present. I know that with every blender full of food, that I am ABLE to make for her, that love comes in many forms. It comes in a glance, an inside joke shared between just you two. It comes in a two-second hug, or a long day of cuddles because she is so sick she can’t move. Love comes in the nightly routine of crushing medicine and putting on a pull-up. There is love in every “Mama, can you {fill in the blank}”. Every untied shoe is an opportunity to exchange love.
Love isn’t always an “I love you”. Status isn’t always a post. Beauty isn’t always in the bottom of a makeup bag, but rather brushing the massive knot {baby dread} out of your daughter's hair, while she is in a coma, recovering {from that “monster” I told you about trying to kill her}. Strength isn’t found in a gym, but on the hospital shower floor, {which is the only thing hold you from falling down}. Hope & Faith aren’t just words on your coffee cup, they are the lifeline to your existence. Joy isn’t somewhere sunny and 75*, it’s one more good night before you finally drift off into an abyss, even though you’ve already made your rounds more times than you’d actually like to admit {ok, I admit.. I check at least 4 or 5 times on my girl to reposition or just make sure she is still breathing, before I even think about lying down and letting my eyes close}.
So this Mother’s day, I want to say Thank You to the trials I have seen my daughter through. For without them I would not be the woman I am, and most definitely not the MOTHER I am.
BUT, because this feels a little soap boxy…. I have to remind you, I AM NOT PERFECT. I stumble. I fall. I breakdown. But I no not give up. I do not stoop. And I always, always get back up and come back stronger. Always. Giving up is not an option, and neither is my child. There will never, ever be a moment where I will look back and think, “I should {fill in the blank} have done more of”. I have done it all. Every heart-wrenching moment, I have been there. I have felt it and I have lived through it far enough that I am and will continue to allow it to change me. It will shape me for who I am to become, and for who my daughter will be. In all the ugliness that this life has brought us, I chose to see the beauty that rises from the ashes.
I can not express to you how real and brutally honest this is for me today. I am in a place in my life I never imagined I would be in. Call it naive. Call it oblivious. Whatever. I never in a million years thought I would be "THIS" mom. Honestly, I never gave much thought to what it would be like to be a mom of a kid that "has something wrong with it"; because there is nothing wrong with my CHILD. She is beautifully and perfectly made. But besides that, I never stopped to wonder what a mom must feel like to have a kid with a "disability". How different it is then having a child who is healthy, can run and play with his/her friends and you don't worry about if those kids are sick, or if they've been around a kid that is. To have a kid that doesn't have to see the doctors every three months of an MRI of her brain, to see if the monster that tried to kill her is growing again. {and now we are almost at weekly, and for sure, bi-weekly appointments. not to mention all the therapy appointments and such in between} I never stopped to think about how lonely and isolating it could be to have a child with extra needs. But now that I am here, I am THAT Mom, I am proud! And there is no way I would have it any other way. You see, I live in a magical and special world.
I know love in its purest form. It's rawest form. And a love so unbelievably UNCONDITIONAL you wouldn't believe me even if I could describe it. I have felt the deepest pains, the ones that burn in your bones. Pain at absolutely paralyzes you. For hours and hours. And all you can do is lie there, almost lifeless, and sob. And moan. Begging for something, anything really. However, {and this is the magical part} because I know what that pain is, because I have lived that and THROUGH that; I know joy. I know how to be present. I know that with every blender full of food, that I am ABLE to make for her, that love comes in many forms. It comes in a glance, an inside joke shared between just you two. It comes in a two-second hug, or a long day of cuddles because she is so sick she can’t move. Love comes in the nightly routine of crushing medicine and putting on a pull-up. There is love in every “Mama, can you {fill in the blank}”. Every untied shoe is an opportunity to exchange love.
Love isn’t always an “I love you”. Status isn’t always a post. Beauty isn’t always in the bottom of a makeup bag, but rather brushing the massive knot {baby dread} out of your daughter's hair, while she is in a coma, recovering {from that “monster” I told you about trying to kill her}. Strength isn’t found in a gym, but on the hospital shower floor, {which is the only thing hold you from falling down}. Hope & Faith aren’t just words on your coffee cup, they are the lifeline to your existence. Joy isn’t somewhere sunny and 75*, it’s one more good night before you finally drift off into an abyss, even though you’ve already made your rounds more times than you’d actually like to admit {ok, I admit.. I check at least 4 or 5 times on my girl to reposition or just make sure she is still breathing, before I even think about lying down and letting my eyes close}.
So this Mother’s day, I want to say Thank You to the trials I have seen my daughter through. For without them I would not be the woman I am, and most definitely not the MOTHER I am.
BUT, because this feels a little soap boxy…. I have to remind you, I AM NOT PERFECT. I stumble. I fall. I breakdown. But I no not give up. I do not stoop. And I always, always get back up and come back stronger. Always. Giving up is not an option, and neither is my child. There will never, ever be a moment where I will look back and think, “I should {fill in the blank} have done more of”. I have done it all. Every heart-wrenching moment, I have been there. I have felt it and I have lived through it far enough that I am and will continue to allow it to change me. It will shape me for who I am to become, and for who my daughter will be. In all the ugliness that this life has brought us, I chose to see the beauty that rises from the ashes.
IF you want to read what inspired this post, please click the link below.
http://community.today.com/parentingteam/post/its-not-your-mothers-mothers-day-things-i-want-to-say-to-my-disabled-child
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