Saturday, January 29, 2011

A new low

My fingers are still a little orange. I stood down in the kitchen stuffing cheesepuffs in my mouth crying my eyes out. I don't eat cheesepuffs . . . ever. I should have known there was something wrong when I began craving them everytime I passed the bag in the kitchen. The last time I had them was in college. It was a case of the munchies after drinking too much Zima. (Let's just say that didn't end well at all.) I am never an emotional eater. I tweeze my eyebrows and grind my teeth and pray a lot, but I don't eat when I'm sad or mad or worried. This was a new low.

We had been planning taking Danica out tonight for awhile now. We had two special invitations, one to a fundraiser for her friend Brooke who has Chiari and the other to her friend Brooke's birthday party. When we found out her brace wasn't coming off we still decided we would take her to these two events. They were within a mile of one another and several miles from our house. The timing was just an hour apart. Getting the wheelchair in and out of our house is tough. I cannot lift it at all, and Dan should not be lifting it. So, knowing we would be taking it in and out of the car several times tonight as well as the house made this an even bigger deal, but we moved forward with our plans.

Danica did really well at the first stop. We were one of the first people there, and she was very excited to give her gift to Brooke, see their picture together on the big screen and eat spaghetti. I noticed how hard it is for her to really socialize in her wheelchair. When you are strapped into a chair you are are already completely dependent on others to take you where you need to go and get you what you need or want, but I think the hardest thing is waiting for people to sit down and really engage you. Often you are left out after a quick "hello". I have felt this even in our home when children come to play or visit. The wheelchair and the brace are not something they are comfortable with to start with much less having to sit still and focus on a friend stuck in one. It's very difficult for Danica to see them active and accept her own restrictions, especially because she CAN walk and is not allowed to.

After an hour at the benefit we headed to our church for her other friend's fourth birthday party. A lot of thought went into the fact Danica would be there, and Brooke's mom, Larissa, planned a bead activity at a table where Danica could roll her chair right up to the table and also cupcake decorating. Danica even tried her hand at cornhole. I could tell she was getting very tired and agitated. All the other children were running around, and she was visibly upset. She starting clawing at her neck and making red scratch marks. Since Cincinnati we have been battling pressure sores on both sides of her neck. The brace is hurting her. I think the fit has something to do with it but also her moving her neck more and more and us letting her increase her activity here at home. When Brooke was opening her presents all the kids were clamoring to sit close and see, and I was trying to hold on to Danica and also let her be part of the action. She was fighting me.

I was fine. I was tired and overwhelmed but fine. Then one of the guests asked me how Danica was doing. I gave the usual description of how we are hanging in there. Then he asked how I was. I crumbled inside. We said our goodbyes as they were cutting the cake and on the way home I began crying. When we got inside Danica was in full on melt down mode.

This is hard. It's been almost 20 weeks Danica and I have been homebound. I think both of us are forgetting a little how to function outside these walls. I think we are both a little depressed. I think we are wondering if this is really going to have an end. We both thought tonight was going to be a really fun thing, and instead it reminded us how different we have to be right now. Dan and Delaney are on the fringe. They get to leave here everyday. They see it, but it feels different to them. They try to understand why Danica and I are crying. They know it has been a rough night, but they can't pin point why.

I crawled into the tight space beside Danica pressed against the rail on her bed and sang the songs she loves, "Jesus loves me, My God is so big, Sleep sound in Jesus, He's got the whole world in His hands, Hush little baby . . ." When she fell asleep I moved onto her floor and prayed over her like I always do. "God, please . . ." I went downstairs and grabbed the cheesepuffs.

Everyone is asleep now. Dan has been a prince the past days, always doing more because I feel so badly and have had the flu on top of it. He slept all last night on Danica's floor to make sure I could have an uninterrupted sleep. I know he stuffs his frustration deep down inside, and it's hard for him to see the crazy cheesepuff lady emerge from the tough as nails woman he thinks he is married to most of the time. I have no great truth or wonderful quote or even a verse for now. Just orange fingers and a new low in this journey.


  1. I feel like a broken record saying this...but I am praying for you guys! Love & hugs!

  2. Dearest Monica, I've been reading Ann Voskamp's book, "One Thousand Gifts", starting it while Samuel was in the hospital. If you have a copy, I'm sure it will encourage you greatly. Kalen deals with the withdrawal of others daily. He has made great strides the past three years in acceptance of his situation, but still struggles with frustration at his limits. Ann's perspective on thanksgiving is so wonderful, and so hard at the same time. As she says, it takes constant practice. May the Lord give us all the grace to keep on practicing. I'm praying for you all as you walk this journey mapped out for you by the God of all love.

  3. Oh Monica I am so sorry! I feel terrible! I wish the night would have gone better for you all. I should have sat and talked with you more! Please forgive me. We too deal with the meltdowns. In fact Brooke had several last night. I just had to take her somewhere quiet and let her relax. I wish they did not wear out so easy. Even when they are able to run around, I have to try and convince her she is going to hurt. It is hard for them to get this! Thank you for being there!!!! It meant so much to all of us!!!

  4. "Therefore the LORD waits to be gracious to you, and therefore he exalts himself to show mercy to you. For the LORD is a God of justice; blessed are all those who wait for him.
    For a people shall dwell in Zion, in Jerusalem; you shall weep no more. He will surely be gracious to you at the sound of your cry. As soon as he hears it, he answers you.
    And though the Lord give you the bread of adversity and the water of affliction, yet your Teacher will not hide himself anymore, but your eyes shall see your Teacher.
    And your ears shall hear a word behind you, saying, "This is the way, walk in it," when you turn to the right or when you turn to the left." Isaiah 30:18-21

    Praying for you lots.