Sunday, February 15, 2015

You'll Be the One Who Knows

What's it like having a medically fragile child who at the same time is unable to tell you his symptoms or what it feels like in his body?

You hold your breath. You check him over every day for any sign of illness, injury and you hope you find nothing. When there is an injury or illness, you hold you breath. You treat it and hope it doesn't spread. You keep the dark thoughts in the back of your mind from entering your conscious mind. You pray the doctors are right in their diagnosis and are doing the right thing. 

You spend a lot of time researching. And hoping. Hoping something will add up. Hoping the symptoms will come together and make sense. 

I spend time teaching. Teaching the language of pain. Hoping he will understand and be able to start telling me. And knowing how hard it is to teach your child the different types of pain. And silently crying on the inside when he does tell you the pain he's in. Knowing every day he's having pounding headaches or it feels like a sharp knife as he tells you. 

Then you call doctors. You research. You try to put the pieces together. Treatment begins and you hold your breath. You hope it's the right thing. But you prepare for if it's not. 

Sometimes you have to protect your child instead of being able to hug and kiss them. This may be one of the hardest things. When my job just becomes protecting and keeping him from hurting himself because the pain inside himself is too great, I often weep at night for the choices we must make. And I just want to hug him and tell him it will be okay and I will make it better. Nothing breaks your heart more than watching them suffer and know you are helpless, other than to try to calm and keep searching for answers. 

It's one thing to be medically fragile, it's another thing to then not be able to tell you the symptoms. Everything is locked up inside their body and you have to play a behavior detective to figure out what the symptoms are and what the cause of those symptoms are. It's a vicious circle. Through it all, you hold your breath. More than anything you love. You love harder than most people can imagine because you never know what the next moment will bring. Will I have the dimple smile and tears of happiness or will I have the cries of pain? Nothing in this world prepares you for the agony inside your heart and the hope that your child will be free of pain and back to health. But to also realize this cycle will not end anytime soon. 
So you are often holding your breath. And loving. Loving harder than you ever thought imaginable. And when you hug, you hug deeper, stronger and longer than you knew was possible. And you live, live a fuller life than you ever imagined and cherish each moment your child is well and happy and smiling. 

And you say I love you. Always. As much as possible. So he will always know your love is there and never wavering. 

"When they ask how far love goes, when my job is done, you'll be the one who knows. " Dar Williams. 

24 comments:

  1. Oh momma, I'm praying for Kreed (and you) right now. As Matthew communicates more and more I am seeing a pattern of pain/meltdown and he's also a mixed case....no idea what caused him to just stop swallowing and end up with a feeding tube. Doctors can't figure it out and he gets weird rashes no one can figure out too. I can relate somewhat to the late night searches, trying to figure out what the problem is....and loving him so much that it's overwhelming and just hoping, praying he knows it. In those hard times, knowing what Jesus suffered for me, that He has saved me by the shedding of his own blood, knowing he understands and is with me, keeps me going. I think of you and kreed so often, and you are in our prayers. May the Lord give you the strength for today.

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    1. Hi. I was wondering when you said your son Matthew no longer swallows, did you mean he does not swallow anymore or that his swallow mechanism or his esophageal motility has changed? I am asking because my son who is also autistic , nonverbal , multiple diagnoses , also lost his ability to swallow. We did a swallow study and he no longer has motility in his esophagus so when he tries to swallow only gravity moves the food down . Because of this, he began to refuse to eat . My son already had a G-tube in place but it was hard for us because we have been working for years on getting him to eat. My son also has odd rashes all over his body and several other things that happen the doctors can't explain . Any information you have would be great .

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    2. Wow very similar stories! Swallow study said they didn't see anything wrong, but he was refusing to swallow during the study.....so I'd love to hear more about your story too, can you email me and we can talk at length? Daisygirldesigns @ yahoo dot com

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    3. Thank you for your comment (and all your comments!) It's amazing what we have to do when our kids can't tell us whats wrong!

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  2. Hi, I wanted to say thank you for your facebook and blog. You have a unique way of providing a view I never saw before,  as someone with autism I never understood the frustration that my parents must of gone through with me. It must of been painful for my parents watching me be lost all the time, biting,  and hitting myself, never fitting in with others in my peer-group. If that wasn't enough having counselor,  psychological professionals, teachers, and and just about everyone telling my parents that I should be placed in institutions because I didn't talk until latter in life, and I never really fit in must of weighted heavy on there well being.I know they would get frustrated at me for crawling under a chair and refuse to come out for hours, or trying to teach me simple things that I wouldn't grasp, the endless list of normal life tasks that escaped me.I also had issues with continual infections, bones that would stop processing iron leaving me sick and confused. All the things that I really never understood or thought about until I read some of your personal accounts, now I can say thank you to my parents, thank you for driving me miles and miles every week to take me to the special school, for not giving up on me when everyone else was saying I would never be able to function,  even to this day you check up on me. Thank you for sharing your experience, thoughts, joy, and struggles.

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    1. Kenneth, thank you so much for your thoughts. Your comment has meant so so so much for me! To know that someone who has autism seems the love we have for Kreed and made you reflect on your own parents love for you. Thank you!

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  3. Erin - I know only a fraction of this because my son doesn't have the medical issues Kreed does but I understand how scared and worried you are and how much pain you are in. You and Kreed are lucky to have each other. I hope he is on the mend very soon.

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  4. Is everything ok with you and Kreed? Yesterday the blog and Facebook and all the videos were marked private? I was so concerned! I hope the Facebook will e opened up again, I don't have an account there (and don't want one) but your guys are so inspirational and helpful to Matthew and I. Please don't stop sharing :) I have been praying for you both and pray everything is alright.

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  5. I am also very concerned. Are you two ok? Xxx

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    1. We are okay. There were issues that caused us to make his facebook private for now. I will try to keep the blog open and updated.

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    2. That's too bad as I was a loyal follower on facebook. I bet some idiot messed it up for you. That's too bad. Good luck and I hope Kreed feels better soon. I was worried for him when the FB page disappeared.

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  6. Terribly worried about Kreed. Sending prayers and hugs and love.

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    1. We are okay. There were issues that caused us to close his facebook for now, we hope to reopen in the future. I will try to keep the blog open and updated.

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  7. I can't even find their facebook page anymore :(

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    1. I know. We've had to close it temporarily. I hope to reopen it soon and explain. I will try to keep the blog open and updated.

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  9. The family decided it was in Kreeds best interest and safety to make the page private. You will be missed, you and Kreed are an amazing inspiration to so many

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    1. Oh that's so sad :( I'm going to miss seeing his pictures and progress so much. Erin, I would love to email back and forth with you if you are able. Daisygirldesigns @ yahoo dot com

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  10. I am very sad to hear that you will no longer have your Facebook page but I do understand. I just want to thank you for all the joy and smiles Kreed brought to me and thousands of others. He is a wonderful young man who I will dearly miss but never stop praying for. You are an awesome mom who has tought many so much and I thank you for that. Good luck and God bless!

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    1. Well said. We looked forward to the daily posts and updates. They will truly be missed.

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    2. We hope to reopen it in the future and I will explain better why it came down temporarily. I will try to keep the blog open and updated.

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  11. Thank you for all the inspirations you gave all of your followers families. My daughter is better off with the information you made available to us. Kreed is awesome and you're awesome Erin. May you and your family be blessed all your years. Thanks again!

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