The hard part...

 Sinus surgery is miserable..especially for a little one who  has already been through so much..

He is home now...his face is swollen and he is feeling awful. We are trying to control the pain with tylenol w/codeine, but he has been crying off and on since the surgery. Poor little guy.. 

When someone close to you dies, the first phases of grief are acknowledged by all. In the early days, there are many people who are there to help, to pray, to give support. No one expects your life to go back to normal. You don't expect yourself to get back to normal. While this phase of grief is tremendously difficult, I have always found the next phase to be the hard part...the time when life for most everyone else goes back to normal and you are still stuck in the loss.

That is how we are feeling six months after a bone marrow transplant. We knew the months in the hospital would be grueling. We prepared the kids as best we could. We didn't expect anything more from ourselves than we caring for Elijah and his needs. Paperwork got behind, bills were barely paid on time, and the house barely stood standing. But, that was ok. We were in crisis and we knew it..others knew it.

Now, Elijah has been home a few months. He has been readmitted twice for sepsis..each time another week at the hospital. We are a family separated again.  And when he gets home, there are medications, IV's, feeding issues, and stress. Even though the transplant appears to be a success in treating one part of his disease, there are still so many unresolved issues. We worry about his blood counts, his other issues, his future. And while we are gone at the hospital or dealing with all the work that goes along with caring for a sick child, assignments at school aren't getting turned in, kids are getting suspended, and life has not gone back to normal. This is the tough part.

The kids are feeling the stress. We are feeling the stress. But, Elijah looks better. He has a full head of hair. He is home. Life she be back to normal, right? It is so far from normal...and yet we are really still in crisis. We are just barely hanging on...

What makes things even more complex is that our normal has never been nor ever will be very normal. It is not like our kids were doing fine in school and things suddenly tanked and we knew it was the stress of a very sick sibling. All of the 9 kids in our home are on IEP's because of learning differences..most with underlying brain damage that effects their abilities to process what is going on around them. So the crisis in our home is magnified. And the lens that our kids see through is like viewing life through a distorted fun house mirror at the county fair. It is hard to trying to decipher how they are handling things because of the distortion.

Once Elijah got home, we tried to continue on with our life as if things would go back to normal. Life goes on for the rest of the world, but we are still stopped...

And so, now, I am telling you all of this to remind myself that we are not okay. Things are not anywhere near okay. We are struggling. We are barely keeping our head above water. I am writing this to remind myself that we are going to be okay. That we are still in the midst of  this battle...and it is okay to be okay with life as it is right now. I am reminding myself that there is no end date to this..and that I need to drop the self imposed expectations I have placed on myself.

I want to remind myself that it is okay that we can't do it all...or even half of it. The paperwork isn't going to get done...some things in life are just have to be done to get by. Even though it makes me cringe to think of doing things just to get by... I am going to be okay with teachers wondering where these parents are and thinking that if they would just care about their kids, then we would help them more with the homework or take away privileges when they get in trouble. The Martindale name will be synonymous with mediocre when it comes to school these days. And, I am going to embrace our mediocrity...

...Because we are doing all that we can. We are doing what is most important to our family..no place for extras that aren't important right now. And instead of feeling ten steps behind my own life, I want to live in this moment..tough as it is. I know God has placed us here..and even when I can't imagine how we are going to make it through the next day..or the next few hours, He will bring us through...