There is fear. Real. Choking. Fear. I tell myself that it is not "of God," but I can't hear me. There is numbness filling me and then a torrent of tears which I must hide from my children lest they become frightened, too. I look for places to set it down, if only for a moment, and they do not exist.
She broke her toe! That was all it was. It was destined to be a family joke and the subject of teasing for years to come. The toe was broken, we were so sure of it. Until it didn't heal. Until the swelling never went away. Until the xrays last week showed no break and no dislocation, just pockets of fluid. Until her knee swelled up, too.
Damn that swollen knee!
It was that knee that landed us at Children's Hospital. It was that knee whose xrays showed no injuries. It was that knee that was revealed to be filled with fluids which puffed it up until we could no longer see her kneecap. It was that knee which my husband had to hold her while it was drained. And she screamed. She screamed for them to stop and I could only sit in the corner and rock her sister and cry. It was that knee which made them say words like arthritis and autoimmune and rheumatology. And I sat there too numb to respond.
Crap.
Crap. Crap. Crap.
We don't even know for sure. The not knowing triples the hurt. I need to know my enemies and stare them down.
The specialists can't see her for a month. There are so few doctors for juvenile arthritis. No official diagnosis means no treatment plan. It also seems to mean no improvement. Only my aching child.
Sometime soon I have to take away her childish dreams for this year. She won a solo in her ballet recital and got to wear a purple tutu. She can not dance on her knee. How do I steal that excitement away? I'm already dreading her tears. It just seems like one more pain to lay upon her and she's only 7. She has to stop her beloved karate at least until the swelling is gone, but who knows after that? She just earned her orange belt and lived for Tuesday and Thursday nights. Her dreams for herself as a grown up are largely untouched, but those childhood wishes have been reduced to "I want to be able to run." Running? Are you freaking kidding me? We're back at running? She mastered that at 2. How are we at this point?
It's only been 6 days since the knee swelled. I've gone from long joyful prayers of thanksgiving to the numbness of one choked out word. "Help."
33 comments:
Prayers. Lots. Coming.
Will join you in prayer, would you like some water from Lourdes? I know you don't have words right now..... I gladly will lend you mine. Sara
I will pray. I was diagnosed with juvenile rheumatoid arthritis 49 years ago. After a year, God blessed me (and my parents) with remission. The disease did return; when I was turning 50 and my children were grown. God is good. There are remarkable drugs available now that not only relieve symptoms, but stop the progression of the disease. Almost all the time, I feel fine. I don't especially like it that I have to be on these drugs, but it is better than the alternative. God has a plan. I will pray for your daughter and for you.
Yes, Sara, I would love some water from Lourdes.
Thank you.
Oh I'm sorry. Prayers.
Can I add your name to our prayer request list? We'll pray and suffer for you and your daughter while we train.
http://runforthecall.wordpress.com
Yes, Wayne! God bless you for your kind offer.
It is my pleasure. Your (first) name is on our site and I'm sending it to the team as "possible juvenile rheumatoid arthritis for your daughter." May God hear and answer our prayers in his time and according to his will.
I will be praying for pain relief and healing for your daughter. I will praying for peace for you.
So, sorry. I pray she is healed completely too. Rheumatologists are the worst or one of the worst for appointment availability, and staying on time with their appointments. Sometimes you can go to non-specialist and get cortisone prescription that will take care of the symptoms and pain in the near term while you wait for the specialist. I went to an Orthopedic for joint pain and he gave me a prescription that eliminated the symptoms in three days. I couldn't get into the Rhematologist for over a month, but the symptoms didn't return in that time.
Praying
That has to be the toughest part of being a mom, knowing your child is hurting and not being able to do anything for it but pray. My prayers are added to yours. Hang in there mom.
Praying....
I've been there...on that elevator of despair that just keeps going down forever..
I hope it isn't true..I hope they find a simple reason and a pill that cures it. If not, know that there are many other mothers traveling a similar path of dealing with children with medical issues...and we survive and God uses us ...
Praying! You can do this. She can do this. Jesus will do all the heavy lifting. Just hold onto Mommy Mary's during this hard time of uncertainty.
So sorry to hear this.... Scary stuff, for sure.
Knees and toes can be weird, and weird things can fix them again. Getting the pain under control may help a lot. Don't give up hope and do pray! I will pray too.
If your kid is up for it, she (and the rest of you) may find it useful to be able to "offer up" the pain, fear, uncertainty, etc. I mean, if you're going to have it anyway, you may as well give it to the Lord to make good use of it.
Oh Sweetie... Lifting her in prayer- lifting all of you...
yes-crap. And Sorry. And so many prayers. peace to you all...
Praying for you all. If it helps, a good friend's son had juvenile RA but was able to get back on his skates and play hockey..on the travel team. There is hope.
You are in my family's prayers! I'll say a special prayer to St. Gianna, mother and doctor, because she's my Confirmation saint.
Y'all have got my prayers too.
I saw you got water from Lourdes coming from another poster, which is great! If you want some blessed oil from the Shrine of Our Lady of Good Help (in Wisconsin) let me know, because I've got some.
Just want to offer some encouragement - I'm a premed student, and I shadowed at a pediatric rheumatology clinic a few months ago. Yes, the kids had some tough times dealing with their arthritis, but the ones that took their treatment seriously did awesome. It might not be easy, but stay optimistic.
I don't know where you live, but the doctor I shadowed works at the Fairview clinic in Minneapolis and he was fantastic. If you're anywhere nearby or if you can't get an appointment anywhere else, that might be an option.
And of course, good luck! Stay strong and make sure your daughter knows that this won't be the end of the world. :)
Praying for you and your whole family!
I will be praying for you all.
Praying for you and your daughter..
Prayers from here, too.
I am praying for you and your daughter.
It's darn frustrating to have to wait so long to see a specialist. What a scary time for you.
Lena
You have my prayers, sister. For as long as needed and then some.
praying...
R-
A Rosary for your 7 yo and the whole family will be said by the whole family tomorrow (that's when everyone will be in the same place). Also, I will say one myself tonight.
I've been there--different disease, same fear. God give you strength. Big hug.
Add my prayers to all the others. Through all this God will carry you. Focusing on the fear won't get you anywhere you want or need to be; so keep practicing on letting it go. (ha!) And keep praying that "help."
Prayin' for ya. So tough.
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