More In-betweenness

I have a little medical procedure that I have to get through this morning. It isn't a big deal but, it does mean that I can't have food until it's over. I slept in a little late so that I wouldn't have so much time to think about it! Truly, not a big deal.

Katie is helping me organize my cabinets today to get ready for our friends on New Year's Eve. I am so excited about this...maybe I'll even have some pictures that I can post and share. I know that we are going to watch Tech in the Chick-fil-a bowl and then the big "Ball Drop" from NYC!

Stephen took Kelly the lacy wrist cuffs that I made her. I'll find out today if she liked them. I made some for my Joysong Chorale concert costume for the civil war venue. They look great.

Not a very exciting day in the burg but a pleasant one. Happy In-Betweenness everyone.

In Between

It's in between Christmas and New Year. To me, it's a time for reflection and planning. It's a time to take hold of those things in life that are not working...and then plan for ways to change them. It's also a time to reflect on the wondrous things that have occured and find ways to duplicate them! I'm not a big fan of "New Year's Resolutions" because they are ususally hollow and typical. So, for this upcoming year, I'm planning--not resolving. Planning means action and working toward a goal. Resolve means that you've settled for something. I need to formulate my plan.

Yesterday was Becky's birthday. She is now 26 years old. Unlike Katie, Becky doesn't seem to have so many health concerns. She is married, working, a college graduate and doing fine. She and her husband Rob were with us for Christmas--we all went to visit my mother. Now we need to head to New York to visit Ed's family.

I know that he is homesick. He misses his father and his sister and brother but Ed wouldn't miss time to be with his own children for anything. He is a wonderful, wonderful man. Everyday after work, he goes by the church to say the rosary and pray for us all. He is just beginning to talk openly about faith. That takes a lot of courage, you know. When you open the door for faith filled discussion, you don't know who will walk through it. He is always willing to open the door. I love him.

So, here is a little prayer for the "In Between" time that we're in with hope that it will transform into something wonderful.

Dear Lord,
Praise You for all that You have given us. Thank You for the tough times which have taught us so much. Glory to You for being there and having mercy on us all. Amen.

Day Three

It seems odd to start with Day Three, when so much has happened prior. This blog is about me, my family, our history, and the challenges that we face daily. I hope that you will see faith, hope, and love as we struggle to live our imperfect lives.

Today is December 23, 2009 and my daughter Katie and I are heading to UVA to have some adjustments made for her cochlear implant. This is her second one. The first was not very effective however, we are finding that paired with the second, it is decreasing the amount of ear noise that she perceives. You have no way of knowing how wonderful our visit was on Dec. 21 (more about that later). You see, Katie has been totally deaf since March of 2009 due to NF2. Essentially, our whole family has been deaf since March. I'm learning that what effects one of us, effects all of us... just in different ways.

Neurofibromatosis type II causes tumor growth within the nervous system. Many people dealing with NF2 don't know that they have it until they have difficulty with their hearing. Imagine, a vibrant, active, happy (for the most part), intelligent 19 year old waking up and finding that they can not hear on one side. As a parent, you go through all of the typical questions and seek medical care that seems helpful but often isn't. We didn't really know what was happening until we visited the ENT. He thought it was odd that she was not hearing at all on her left side when there was no visible reason for it. He sent her for more testing right away and that's when the MRI's showed that she had bilateral tumors on her vestibular nerves (balance nerves) that were causing damage to her auditory nerves. The MRI also found three in her brain lining and at least five in her spine.

There isn't much research on this disease. We know that it is usually inherited however, in Katie's case it seems that she is one of the lucky few who have had a spontaneous gene mutation. I'm not a geneticist so I'm not going to dwell on this but let's just say that at this point in time we have been on the craziest roller coaster ride that any family could imagine. All of the stages of grieving, the questioning, the guilt, the wondering about where this came from and why and then finally accepting it for what it is and putting our trust in God for his help and guidance.

Katie is now 23. She has had surgery on both vestibular nerves and they have been removed. She has had two surgeries for the cochlear implants. Now, we have to watch and monitor the tumors in her brain and spine. They could stay dormant for years or just start growing. We have decided as a family that dwelling on the what if's is not productive so we'll just take each day as it comes. As of today, hope springs eternal! It is almost Christmas Eve and we are returning to UVA for a follow-up from Day One.

Day One is the activation day for the implant. For Katie's first implant, Day One was disappointing. It didn't really work well but we knew going into it that there was significant damage on the left side and although the nerve was intact, the damage may have been too great. She did receive some benefit, some sense that people were talking, some sense that things were going on around her, but not much.

Day One for this implant was miraculous. She could tell different pitches, different amounts of sound, could hear paper rustling, tires squishing slush on the road...the turn signal in the car and even the click of computer keys. I wish that you could have been there to see her face the first time she "heard" something! I cried--of course. Each day has been a little better as she gets used to the amount of sound, the quality of sound, and the fact that just about everything in the world makes noise. Making the two hour trip to UVA is now something to be excited about, not something to dread.