A Year of Oxygen

When I woke this morning I must admit that my mind floated back to 12months ago when Faith, my husband and I were in Brisbane thinking we could be here for weeks all because of cross border political red tape in acquiring an oxygen concentrator. I had mixed feelings and thoughts. I could picture not just the room with a cross hanging above the door that Faith was in but the other people that were there. It was like my mind was replaying a story in my head all the while I went on my daily activities. I felt like I was in two worlds, trapped in the present and the past. This seems to happen more when I can easily identify a date related to this time. It was a couple of days before Mother's Day 2011 and now it is around the same time but in 2012. We came to the hospital free of cords and the freedom to move around and we left with a supply of nasal prongs, tape and oxygen bottles. The little face I love now obscured by plastic nasal prongs and a heavy bottle on my shoulder. She is still just as perfect though :) I know this is a positive step in its on own way. Two days after we started the oxygen Faith started talking and saying words, she no longer breathed so deeply and there was no huge dent in her chest when she breathed. All this change over .25 of a litre, such a small amount of oxygen to make such a huge difference. I did feel safer with Faith on oxygen as now her oxygen saturation didn't drop so she was more stable. Faith has no respiratory problems it is all related to the Arnold Chiari ii malformation.

I don't know if other families struggle with doctor's not fully understanding Arnold Chiari ii, but we do. I can see why Faith doesn't progress in some areas and it is because of the Arnold Chiari ii. I don't understand why the doctor's cannot see this, one doctor said to me the other day that Arnold Chiari is just part of spina bifida, true in some cases, but Faith's is symptomatic. For us, if Faith didn't have symptomatic Arnold Chiari she most likely wouldn't have developed syringomyelia and Faith wouldn't have had so many challenges. It just frustrates me sometimes when doctor's fail to see or just can't. Our neurologist and neurosurgeons understand it because not only have they physically seen it in Faith they have seen it in the multiple MRI scans. But I digress, I think my brain needs a print off function so that when I have lots to say I can print off the emotions, frustrations and feelings. It usually happens late at night and then if I could print it off I could then refer to it later or recount ideas I had during the dark hours of the night. I am always thinking of ways to help Faith progress further to grow and prosper.

Joys of our garden

With a year of oxygen we have learnt many things about patience, perseverance and appreciation of the little things. Life is more fragile that I had imagined but has more beauty to be found when I know where to look. Life is precious. Faith loves going outside and watching the breeze touch the leaves and the birds sing a song as they feed in the trees and talk to each other. She is so intrigued with the world outside. She watches from our deck but hopefully soon the time will come and we will have a low set house so we can go outside and touch the soft grass, watch the ants march by, smell the flowers and watch nature in action close up. I just have to be patient while we wait for our house to sell. But when it does the world will open up a little more for my husband, Faith and I. Again patience and trust in God is a must. (James 1:1-8) Time will pass and hopefully sooner rather later Faith will be off the oxygen and she can be free from one less tube.