Elijah's counts are still not in. He is still running a fever (102.5.) Turtles are slow and steady...they set their own pace. The turtle and Elijah have alot in common. It's day 17--he still has no white blood cells. Some of his other counts that we don't want to increase are rising...liver enxymes, renal issues. His nausea persists along with mild bleeding issues. The whites of his eyes have fresh red blood streaked through them. His energy level is up and down...but mostly down. He is drinking sips of water!! After 5 years of therapy to try and help him drink anything by mouth, he has decided to drink some water all on his own. He may have only drank an ounce or two over a whole day, but it is so great!
Before transplant, I order a necklace with the verse, Jeremiah 29:11, on it. This verse (For I know the plans I have for you declared the Lord, plans for wholenss and not for evil to give you a future and a hope. Jer 29:11) is the one that has carried us through so much with Elijah. I ordered the necklace on Etsy from a mom who is raising money for adoption (theAdoptShoppe). I had shared a quick bit about our story of adoption and a link to the blog with her.
When my necklace came, there was not one pendant but two. I had just written a post about "Looking up...not around." I said in that post, that if I had a mantra, that would be it...I need to be reminded so often to look up instead all around. She had made me a pendant..with those words. When I opened that package, I was in tears. What a precious, thoughtful gesture from someone who I had never met.
And so today, I have changed the necklace I have been wearing to my "look up" necklace. I have allowed myself to look around...without first looking up. It is like looking at the sun without sunglasses. The light is blinding...overwhelming, painful. My life and the reality of it right now is blinding, overwhelming and painful.
- My little boy is hurting..he is sick...he is fragile..and I can't do a thing about it...that alone can be too much to bear..
- My son has not stepped foot out of this hospital room for one month now. When I get the occassional chance to walk out of the hospital into the fresh air, I am often overwhelmed...so quickly we can lose perspective. I must remind myself of what the weather feels like, how bright the sunshine is, and how it feels to have wind blow in my face. Elijah has not had that chance for a month...how will he handle all of the "outside" world when he gets the chance.
- I have 9 other children who need me...and most of them have their mental health and medical issues that make the seperation from them even more difficult...
- I am lost at how to help the other kids...going home for a few hours is hard on everyone. I must face so much that needs to get done...paperwork, appointments that need to be made. They are used to their routines without me and I am used to my routines at the hospital.
- I want to want to spend the time I have with the kids at home...but I am just so tired ...I really just want to find a quiet place where I can be alone and let my body and soul rest. guilt. yuck.
- This road is far from over for Elijah..this is a long haul..no sprint here..the marathon began on the day Elijah was born and will not end after transplant. This is a lifetime of tough. That reality is hard to face when you look right into it head on.
- I feel sorry for our family...why must they have to go through so much? Our kids have already lost a brother...they have learned so many lessons of compassion, grief and the faith that holds life all together after it seems to crumble...do they really need more lessons?
- I have already lost a son. I have chosen a cemetary plot...a headstone. Will I be asked to do that again?
- I am afraid of how I will reenter my life again after this...with several more months ahead of living away from home and trying to somehow to manage a household of 12, how long will it take to recover? To find my routine again? To be able to feel as if we are no longer in crisis mode?