WOW! I can't believe how long it has been since I have posted. It is a good thing! It means I have been living life and the kids are doing pretty good. That feels nice to write. Somewhat normal feels good. Even in our normal their have been some set backs but also victories. This year all kids are in school. I am praying it holds. Chandler loves his new teacher and school. Brooke had a bit of a bumpy start. But the school once again rose to the occasion and helped us smooth her road. Aidan has headed off to HS. He is not entirely pumped about full days of school but seems to be adjusting ever so slowly.
School is a blessing but also comes with some heavy burdens too. The kids going full days makes them hurt more. Coming home with homework only makes the days longer. Having the teaching load off of me does allow some down time. My hope was that I could rest during day and then help them with anything they need in evening. This way by evening(which is one of my most painful times) I would not be a ragged, nasty mess. We survived the first week with us all still liking each other. That feels like a small victory.
My plan of resting has not come to fruition. It has been a busy time of setting up 3 kids 504 plans and making sure all kids have their needs met. I am also quite aware of my body failing me once again. My neck and lower back have been in a fight with the rest of me since April. I kept saying I needed to just push through it would pass. Slowly though it has become increasingly worse. I could not sleep for more than a few hours. Laying on my back led to hot pain in my lower back and numbness in my legs. Laying on my sides, causes my shoulders to sublux and my neck to throb. I broke down and pulled out my collar this week. I grudgingly put it on at night. It has helped my neck while sleeping. No help for back and shoulder. But the collar instantly causes relief in my neck and head.
I know I have to see a neurosurgeon again. As much as I adore my Doctor in Maryland, he is far and very expensive. There is no local doc who will touch my neck. Thankfully a friend with EDS uses a doctor in Columbus. I will be seeing him the beginning of October. It seems so far away. And yet, I am terrified to see him. I do not want more surgery. I also do not want to be in constant pain. I also am scared he will just say, "this is it. there is no more that can be done." That would mean collar most of the time and possibly a wheel chair sooner than I thought.
For now, I am trying my best to be a good mom, wife, daughter, and friend. I fail often and I am sorry. I do not want to show my pain and have struggled lately not to show it. Walking has become very difficult. Many times I get to my car and cry because my legs are numb and my head is roaring. Then I do my best to laugh. My kids are so great at trying to find a way to make me laugh. The whole family has tried hard to help me through this. I know their hearts are also struggling with their own pain and life. They still have a way of helping me through mine. I am so grateful for this! God knew the exact people I needed!
We are trying to make some adaptions to this house. It has a lot of stairs! We are hoping to create a first floor laundry. This would at least relieve a bit of the stress on my body. Still not completely sure if doable. I am considering making my bedroom on first floor. Do not love the idea of taking away our living space with a bed but it could help. I have an amazing friend who helps with cleaning every other week. I am so blessed by this and her friendship.
I ask humbly again for prayers. Prayers for answers and the grace I need to hear whatever it is. Prayers for my family to stay on an upswing and school to be a blessing to us all. Prayers for understanding when I have to cancel plans or can't do all the things I wish I could to be there for others. Prayers for compassion when you see me completely disheveled, and I promise to do my best to be positive. I know I am here once again to teach me life is a gift. Each moment no matter how hurtful or painful can be turned into a blessing. My heart needs to remember this. <3