Thursday, May 1, 2014

to the kids out there...

ava had a real simple little thing this past week. just a sleep study. nothing crazy or serious. but man it has messed with me a lot since. i guess seeing your little love all full of wires and tubes just does something to your insides. for me this was the first thing we've had to do with ava in regards to medical stuff. my mind has been tricking me all week that when it comes to my kids i am weak. i fall apart. i believe those are lies. you can be both weak and strong. i think that is possible and must exist alongside one another. i cried laying in bed with her during her study. she hated that silly tube they put in her nose because it was scratchy. but our girl. well she did it. she let them put wires all over her head, face, and chest. she did it. mostly because i think she does really like doctor stuff and because it didn't hurt. it was harmless. mostly annoying to sleep with your face covered in tape and electrodes. what an awful word electrodes is. she slept. they got the information they needed. she got pancakes for breakfast and a new stuffed puppy from target. all is well.

mostly i am writing today because our routine (just making sure she is getting all the oxygen she needs while asleep) sleep test is nothing. i mean nothing compared to those of you out there who have dealt with some stupid hard stuff when it comes to your kiddos or siblings or grand kids or friends. it does something unnatural to your heart to see children in pain. especially when they are too young to possibly understand why it is happening to them. had i not had cancer i do think i would have this outlook or maybe i would. we wont ever know. but i learned that we are capable of more than we ever might imagine we are. i know this to be absolute truth. if we were given a book with our entire journey written out we'd probably cripple under the pressure and anxiety and worry in what that book might hold. i would prefer no book. i do better with walking in stuff as it comes. not that i am good at it or anything. just that it gives us a little at a time instead of one big overwhelming book.

for those of you who have walked this road or started today (follow sweet maureen and her family. we love you, tiny john, his life and for each step ahead) or maybe next month. i am sure you could echo that in the midst of heart break and worry the Lord has provided at each step and in every way. even when it was all way too much. i lived through cancer and often continue to did we do that? seriously. how? 

in the midst of tuesday night with ava and this tiny little test my heart grew. far deeper and wider than before we walked into that room. to all of you who have walked a tougher road. not being able to take the pain away from your child. tests and tests. chemo and chemo. shots. surgery. and death. i am sorry. i hate it. today my heart is for you. lifting you up and praying that the Lord gives you more joy and strength and hope and community and whatever it is you need to sustain yourself another minute or hour or day or month or year. i am pleading on your behalf. i simply had never dealt with more than a little shot at the pediatricians office. even though ava did not experience discomfort or pain it brought something to the surface that i didn't know was in me. i mean i hoped it was. i figured somewhere inside it was there. but tuesday i experienced it for the first time. i felt it and acknowledged it and thought...this is nothing. our girl is going to be okay. but what about those that aren't or will be but first need some surgery or medicine to get them there. thankful i live in a place where that is accessible.

i was going to share a little picture of ava from tuesday but it seems trite in comparison to the battles being fought out there today. thank you for standing by your babies and making the painful decisions on their behalf and the exhaustion and stress and questions. oh, man the questions and the options. i pray you are carried today in a way that you've never felt before or even knew existed. you are not alone.

from one mother to another. you can do it. even though you don't want to and it would be easier to fall apart: feel free to do that though. you are noticed and thought of and prayed for and even if only for a second the burden and weight you carry will feel a little lighter.

psalm 138: 7-8a
though i walk in the midst of trouble, you preserve my life; you stretch out your hand against the wrath of my enemies, and your right hand delivers me. The Lord will fulfill his purpose for me; your steadfast love, O Lord, endures forever...

1 comment:

  1. This post I needed. In some ways I've been waiting for it.
    My 16 yr old son has been healthy his entire life, w/the exception of asthma which we controlled at 18 mo old. Lots of late night ER visits & scary moments but got through it. Fear never overcame me. Until March 15th of this year.
    Wks ago, our healthy thriving teenage son had been sick for 2 wks w/gastrointestinal issues, wasnt eating, losing weight, missing school. We're told it's a virus. Ride it out. After 2 wks he woke up w/severe chest pain. This boy who lives w/asthma knew it wasn't his lungs, came to tell me we needed to go to the ER, NOW. ER found he was dehydrated & started pushing fluids into him. Little did they know his heart couldn't handle this & he had another severe attack, ending him up in the Cardiac Intensive Care Unit being prepped for a catheterization in the blink of an eye. Fear HIT. The scope into his heart showed NO internal damage. Thank you Lord. EKG's & ultrasounds showed he had myocarditis, inflammation of the heart muscle AND pericarditis, inflammation of the protective sac around the heart. He was in bad shape. After 5 days in CICU he was sent home w/strict instructions of no activity for 6 mths, numerous follow up appointments & meds. Within a wk we were back in the ER. He was having arrythmias & was put on a 24 hr heart monitor. Once that was read his cardiologist had new instructions. His no activity rule became, you can't do anything but rest. He's active so this was a blow. Since then, his heart HAS improved but his stomach hasn't. He's had dozens of blood tests, pokes, prods, scopes, xrays, etc & they cant find what's wrong. They say the virus sickened his heart & stomach & it may take a long time to heal. His heart still flutters from time to time & we're now awaiting a new gastro scope & biopsy of the inside of his stomach. In the meantime, he began having testicular pain on Mon of this wk.The level of pain & duration alerted his doc so he had an ultrasound & a mass was found. The air got sucked out of the room. Cancer was the fear. Days later we're told it's a cyst BUT to make sure he has to see a urologist for further testing next wk. There's still a chance it's cancer but them telling us it's a cyst is Gods way of protecting our hearts until we know the facts. He goes May 23 for another echo & stress test for his heart & we can't wait. By all rights, the heart attacks should have taken our son. Most stories like his end badly. My fear has been that we're going to miss something, cancer markers will come back negative when they're really positive, dmg to his heart won't be found in time. But our God is faithful.
    Today, I read your post. A sense of calm came over me. I'm not diminishing my son's health problems, but I know God is with him & us & He has been all along. There's a REASON for all of this & no matter the outcome, He will never leave us. My heart aches for the mama's that leave hospitals without their kids. I got to bring mine home.
    I appreciate you saying you notice, pray for & acknowledge parents living nightmares. I've felt abandoned by some & supported by others & Satan has a way of getting into your thoughts & it can be hard to rally. I pray for families struggling & grieving & I hope they'll feel comforted, validated & supported. Never negated or forgotten. No matter what they're going through, its their truth, our truth, at that moment. It's real, its scary, it's painful & it needs ackowledged. Thank you for reminding me I AM strong. I CAN do this. I hope I can do this for someone else.
    I'll continue to pray for you, your health, for Ava & her sleep study results, your move & new adventure. You are inspirational.You are truly blessed & have a lot to offer & I thank you for following God's leading & sharing your heart.
    God Bless you Four! Camie M


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