Tuesday, October 12, 2010

This hurts

‎"Hold everything in your hands lightly, otherwise it hurts when God pries your fingers open." Corrie ten Boom

There is no way to really write about the past few days. Things with Danica have changed from hour to hour, and I have not breathed. Because Danica's case involved two major surgeries and departments the decision making regarding her care has been difficult to navigate. I'm sure once I settle in and process all that has happened I will write about it. I am now a seasoned patient advocate, and I believe I have experiences to truly help others who may have to walk this path or one similar.

As it stands we may be able to go home tomorrow. This has changed several times today, so I am trying to be realistically hopeful. We have to accomplish a car seat test with Danica in her brace to see if it's safe and even feasible comfort wise for such a long drive. Danica will also be sedated and have her brace removed while neurosurgery removes her dressing and sutures and applies a new dressing. Her entire incision is covered by the head portion of the brace. This does not allow for natural air and light to aid in healing. It is beginning to really itch her, and she gets so agitated because she cannot get to it. Lastly we need to get her wheelchair. The company we thought was going to provide it does not accept our insurance. Social work is trying to get our needs met.

Danica is doing really well. When she is up in the wheelchair for any long period of time she expresses discomfort. We made it through today with no narcotics. She was so excited to have Dan come back and has been enjoying having both Meems and Kee Wee doting on her. She is so ready for a change of scenery.

I think now I am through the adrenaline part of the surgery and really painful early recovery days I am cracking. I am in so much personal pain. I am tired. I am very unprepared for the amount of care and supervision Danica will need specifically from me. Most of all I am needing the space that makes me okay and God is taking it away from me. We live in a little 1930s two story home with one bathroom on the second level and steep stairs. There is nothing ideal about our home when it comes to any kind of physical disability. The only answer we have come up with to is to move in with my parents for awhile until Danica is cleared to walk. This kills me.

God made my brain to need order, to find peace in personal space and lots of retreat. Needless to say I have had none of those things the last 10 days. A homecoming to anywhere other than our home just hurts. Today I've been a little mad. I just don't want to sacrifice this. I do feel like God is prying every single thing from me. I haven't lived at home since I was 17. I love my parents dearly, but I need my bed and my books, and my favorite mug and my towels and my pot of mums.

Please pray for my heart. Please pray I will have strength for tomorrow and the long days ahead. This hurts.


  1. God has promised to supply ALL of your needs according to His riches in Christ Jesus. I can guarantee if you need it, He will supply it! His supply will be over and above what you ask or even think.

  2. Monica
    It is ok to be mad! I understand. We also have the 1930's house. We have to go up a huge set of stairs to just get in the house. Although Brooke is not in a wheel chair, I carry her up those stairs daily. Plus another trip to carry chan. My back aches and I tell Tim how will we do this when she is much bigger? There really is no good answer. We can't sell, we just must endure. I know you are overwhelmed. Please know I am lifting you up in prayer. I wish there was a magic wand to give us both houses that worked for our little angels. Ok now I am in tears! Love ya and praying! Please please let me know how I can help!

  3. Oh honey, I am praying that God will GIVE you peace, joy, stability, patience, fortitude and whatever you need to get through this recovery. It sems some families get hit SO hard with trouble and I don't understand why either. You and your family are in my thoughts and prayers. I have a friend who is in her 50's, just found oput she has Chiari and is having surgery on Nov. 9. I am hoping I will be able to be of SOME help to her, even if it is just with love. XO, Pinky

  4. Oh, friend. There are no words. I can't imagine how this must all feel... how overwhelming it all is and all the emotions that must cave in. Not stopping those prayers for all the details and for whispers of peace and strength. The days ahead are long. I am with you, friend, for the long hau. I love you.

  5. I can only imagine how hard all of this is.but i am sure going to your parents house for a few weeks won't be too bad.think of it as extra help.and before you know it you will be back at home.have to look at the positive perks of it all.although i completely know where you are coming from.hopefully that social worker will get everything in place for her wheelchair,and they will figure this whole car seat thing out.glad shes doing pretty good with out all the meds.and that she will be out when they change the dressing.when they took genevas off she was shaking and crying and she didn't have as much done so i couldn't imagine.good luck.you will stay in my prayers.trust God he has a reason.hugs!!!

  6. What a precious, honest heart you've revealed; praying for your strength and the joy of the Lord that will come with that; "God is too wise to be mistaken;God is too good to be unkind...when you don't understand, when you don't see His plan, when you can't trace His hand, trust His heart"...praying that God gives you nothing but His best, and looking back you will know that it was...