Thanks to everyone who has donated to Mabel's Able so far! In just two days of posting it, we have almost received half of our little goal for donations. Remember, we will be raising money until the end of June for the general fund of NORD. Here I am with Harper wearing my button ring around a necklace. For those of you who are just wanting rings, you're on the list and as soon as we have enough made to send, we will be shipping them! I'll keep you updated.
I dyed my hair dark [as you can see.] When I was pregnant with each child I remember setting goals for myself that I thought would make me feel like 'myself' again. One of those goals was losing the baby weight. Check [109 pounds currently]. One of those goals was to grow out my hair. Check. [in the process.] You do things for yourself that will make you feel beautiful and normal again. And each time before, it worked. This time, nothing seems to make me feel like my old self. I am realized more and more, however, that this is ok. I am changed and new. So trying to navigate this ship is a little uncomfortable for me, even still. But I am adjusting.
I am reading a few new books written to help parents who are either in the diagnosis process or written by parents of children with special needs. Some of the stories are about children with mild delays. Some of them are about stories that are so gut wrenching I almost cannot make it through the reading. What has brought me the most comfort from these books is realizing that this process of different emotions every day is normal. It's a sense of grieving; mourning. Only it is a different and more unusual type of grief because no one has died. It's a journey of acceptance and unknowns. It's a journey of healing and strength. This journey is mine and although I am tired of the emotions it is bringing, I am also trying to embrace them and work through them so that hope, strength and acceptance will follow.
None of the kids are feeling well.
2 tests came back Normal for Mabel! We are waiting on the 3rd to be processed. We will not do anymore genetic tests until we see the geneticist June 28th. From what I understand, it takes about 10 days to get results and therefore answers.
We have upped the dose of Mabel's seizure meds. More testing and trying on our girl. Please pray that she does well and the arm and leg tremors would cease completely.
We are under a tornado warning as I type. Prayers appreciated...
Our hearts are breaking for Joplin. I wish I could get there and help.
Nora woke up at 2 am and watched a movie in her room. That was awkward.
We spent the evening at Nanny's house and it was so fun. Jeni & I jumped on the trampoline as the kids rode in the golf cart with Pawpy. Even woo took a little ride. I felt a little free for the first time in awhile. It was great to laugh [really laugh.]
I'm grieving for Oprah a bit today too, I must admit. I didn't think I even really liked Oprah but it just seems so monumental for our generation to have her be off the air. I'll watch today and probably cry.