Maybe it's because we are all here today. We are tripping over one another and bickering and the kids have been ready to trick-or-treat for hours, and it doesn't start until 6pm. Dan and I have no place to go to be alone for a second or to go to be together. Even if you go to the bathroom there is someone sitting on the bed right outside. If you cry, everyone knows. If you yell, everyone knows. More and more things have made there way over here, and it's beginning to pile up in this bedroom. My OCD is getting out of control. I can't handle the clutter and how nothing has a place. This is hard. I'm not forgetting how blessed we are to be here or how amazing my parent's are for having us and sacrificing so much or how hard it is for them. I'm just saying out loud how difficult this is getting.
Delaney wants to go home. She wants her bed and her stuffed animals and her games and her books. She wants her microscope and her art supplies and her rock collection. Danica wants to go home. She wants her bed and her Little People, Legos and her books. She wants her Bitty Baby and her Thomas. I want to go home. I want my bed, my Keurig and mug, my bed, my books and journals. Oh, and my bed. Dan wants to come home and be able to have a beer, watch ESPN, work on his art and finally if and when the kids are finally asleep crawl into bed with me and hold me, his self admitted battery pack for living life. Tomorrow marks four weeks since we have been together as a family in our house. It hurts in all the ways you think it would and a million ways you never expected.
We had a family meeting to talk about how we could manage if we decided we can't do this for several more months. The fact is Danica's wheelchair would have to be downstairs all the time in our house. We barely have room for it to even be pushed around. I would have to somehow carry her up our very steep stairs to use the restroom or do anything upstairs when I am there alone with her. The nights Dan works I could not be there alone with the two girls. I cannot leave Danica alone at all and Delaney is only eight. She needs someone to help her with homework and tuck her in and generally BE with her and love her. It seems impossible. As Thanksgiving and Christmas approach we all long to be in our own space with our own traditions. Advent is very important to me personally and to us as a family. We always put up our tree on Thansgiving Day and begin our Advent rituals that Sunday. Delaney sat at the table during our family meeting and cried, "I am so afraid we aren't even going to have Christmas this year."
On top of all our challenges I am in pain. Not just "take two advil" kind of ache but stabbing pain in my incision area and my bowel and kidneys. I have been lifting Danica since her surgery. I have my appointment with Dr. Romero on Wednesday to begin my six months of Lupron. When we were in the hospital I experienced a supernatural kind of strength. Everyone noticed it. I somehow was able to almost leave my physical body and minister to Danica. For whatever reason God has allowed my very painful fibromyalgia and endometriosis pains to return in full force this past week. Along with it comes so much fatigue and a cloud of depression.
Danica is doing well. She is bored. We have our daily list of things a three year old can do in bed or a wheelchair. It's been a lot colder this week so we haven't gotten out as much. She has settled into her medication routine. She is healing. She is probably adjusting the best of any of us through all this. She is brave and beautiful and when I think I can't do this one more second I look into her brown eyes and kiss her soft sweet forehead, and I know I was born to do this even if it's forever.
I have a little pillow in my living room in the chair I sit in all the time. It's says, "NEST. A place of retreat, rest or lodging." Home is my nest. Dan and I walked to a little three bedroom spec home a block over from my parent's today. It's all on one floor. We tried to dream about living there. We would have no more stairs to worry about with Danica's recovery. A fall is truly one of our greatest fears, and we have so much therapy once we get out of the brace and wheelchair. We know we need to think about a change, but we are too tired to even come up with an idea. My paychecks have stopped. I don't know when I can go back to work. Our credit is ruined by our growing medical bills. We have faithfully paid every house payment or rent early for the past five years. Our home has always stayed a priority, but this world operates on paper and income and earning potential and not the weary eyes of a mother and father who just want a safe place for their girl to heal.
Please pray for us as we move through today. We need a place of retreat. My heart is longing to go home. Our hope remains.
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