On Tuesday of next week, it will have been one month since our appointment in Chicago with the geneticist. I haven't thought about it much until--well today.
I can't help but be desperate for the call and yet I imagine myself not being able to answer when I recognize the number which just so happens to show up "Unknown" on the caller ID. It's a subtle reminder of our life right now-living in the unknown with Mabel.
I have often thought and questioned whether the unknown was a much better place to be in than the known. But I was quickly reminded by my own self that I could never be at peace in this place for long. There is an internal need to know buried within me. We were supposed to know something in about a month. I anticipate the counselor calling anytime within the next week. It could be any moment...
Diagnosis Day. [D-Day] The day that could change our lives forever.
Or the day that the tests come back fine and we know nothing more than we did to begin with, other than the fact that Mabel has constant seizures and a dystrophy in her retinas causing her to not see the way she should. I mean, wouldn't you be fine with knowing those two things but not knowing what caused them to transpire in your child's body?
I didn't think so.
This week has been hard with little sleep and a fussy Mabel. She never cries so to see her so uncomfortable is hard. Plus she's having visible seizures which she hasn't had for awhile (thanks to the masking of her medicine which actually isn't stopping the seizures at all, only making us think that they have stopped.) Cool,
I am reminded that this road we travel is rare. It's hard and frustrating. Teething is normal and I am thankful. It feels like we are experiencing the same things that other moms and babies are. But seizures are not normal. Having your baby try so desperately to look in your direction, yet knowing she isn't seeing you--that's not normal. It's difficult and sad.
So while we are still waiting, I feel confident in our team of Dr's and in the great physician who has His hand upon Mabel even now. We are going to learn to better care for her and love her; but it could come at a high cost--learning things that we never dreamed we would have to.
I want to raise awareness of rare disorders because although no one EVER thinks it could happen to them--I'm here to tell you that it can. Past my selfish ideas or religious misguidance, I have been awakened to the fact that no one is free and clear from experiencing the things that we are going through. I pray with such an urgency and almost a physical pain in my gut that no one would have to experience the kind of questions and unknowns that we have had to this year. But with the chance that you could, please just learn with me so that you aren't alone...
Because alone is a terrible place to be.
So if you have any ideas on how we can raise more awareness, please do share! firstname.lastname@example.org.
For now, we are planning on making some really neat bracelets (some need to be sent out to those who requested one already) and some are going to be available at the race.
Can you help?
We are wanting to make card stock with buttons tied onto ribbon at the top to send out as thank you's for those who donate (either at the race or any other time.)
Can you help?
We are having T-Shirts made with sponsors listed on the back (we think).
Do you want to sponsor? It takes a simple donation!
We are needing people to stand in the gap and pray for us over the race and Mabel's Able in general. We want to raise awareness and funds to be sent for research of rare disease and we want everyone to be involved.
Will you pray?
If you have any more ideas or want to lend a hand in helping with these things, please let me know as soon as possible. I'll get you the ideas and supplies and we'll go from there! Thanks so much and I appreciate you all.
Oh and one more thing. I am going to start putting together a small book for Mabel's Able. My idea is to compile a book of emails, shorts letters, encouraging scripture, or quotes...
from people like you who have been touched by Mabel's story or someone else who is living with a disorder or disease. What have you learned from it? How has it touched you? What do you pray? What verses encourage and uplift you? If you get time, email me! I'd love to hear from you and with your permission, possibly share right here on my blog!
Ok Ok...gotta go. Back to trying to keep everyone cool and not overheated:)