Thursday, May 03, 2007

The Glory, The Rest of the Story

A couple of posts ago, I wrote a story about an experience and an answer to prayer at Fairhavens. I told about a family I met that had gone through some seveere difficulties. Last Friday, I met this family and asked them to look the story over for accuracy, etc. The mother went home, read the story, and sent me the rest of the story. The daughter has gone to be with the Lord now, but my, what a story that took place behind the scenes. I will post what she wrote, unedited comments in between my post; her comments will be italicized.

Finally have found the time to sit down and comment. First of all, I did a cut and paste of your article to comment on specific things.. so now.. the rest of the story.
All week we had guests there from a group home that took care of individuals with special needs; people who were pretty seriously challenged from a developmental point of view. Sometimes they would behave in ways that were not wrong, but just kind of socially awkward
One of them walked up to me during the course of that day, stuck out his hand with a big grin on his face, shook my hand and with difficulty and a brilliantly shining face said, “I believe in Jesus. Do you?”
And God whispered in my ear, “Do you see the glory?”

That was the Christian Horizons group. They are such special people. Some of them came from Christian Horizons group homes, some live with family and come for the holiday, I work in a Christian Horizons group home just north of Oshawa. Such a privelege to be working for a Christian organization that provides supports (homes and day programs) for more developmentally challenged people than any other organization in Canada. They are mainly in Ontario but in the last few years God had been expanding their ministry into third world countries.
I sat down at a table where I met a small girl. She was in a motorized wheelchair.

She walked by herself until early in 2004 when she started to have problems. She had gotten the wheelchair the year previously because she was having dizzy spells.... several months after she got it they discovered the dizziness was caused by high seizure drug levels. In March of 2004 she was in hospital and rehab for about 12 weeks because of severe pain in lower back and she had lost her appetite, fat stores and muscle mass. The dietican worked hard with her trying to increase her appetite but nothing worked. On a really good day she got 400 calories from food... and half of those would be from chocolate. A psychiratist was called in.. they thought that maybe she had a death wish. He was sure that she definitely wanted to live. The feeding tube was finally put in, totally against her wishes. No cause for the pain was found until March 2005 when she was losing feeling in the right leg, using her walker but still falling a lot and losing bladder and bowel control. It was then that a large spinal glioblastoma was found and removed two days later. They couldn't get it all.(not sure I have the right name, but it is normally found in brain and always fatal. Three months of radiation sometimes gives an extra 3 months.. Deb wanted nothing to do with it) She was given 1 - 3 years but I think that timing is more accurate from counting from the time she first had the symptoms a year before surgery.

Looked to be about 11 or 12 years old. Probably weighed all of 70 pounds. Her mother was sitting there as well. I forget the diagnosis of this girl.. but she wasn’t expected to live past her 16th birthday, and she is 29.

Good guess on the weight. She was actually around 60 lbs when she left hospital in May. She was diagnosed with neurofibromatosis when she was a baby. It is a geneitc disease passed on by one parent. I was born with it and had a 50% chance of passing it on but was not told anything about it when I was diagnosed except that it was a cosmetic problem and could be dealt with by having the growths removed. Neurofibromatosis affects a lot of people but can cause no problems or many... no knowing how it will manefest itself.
Deb had very slow development, scoliosis diagnosed at 10 months, problems with attention in school, seizures finally diagnosed around age 12 (after three or more years of misdiagnosis) brain tumors diagnosed at 14. She had many spinal surgeries throughout the years, starting when she was almost 6 until she was 18. She had three brain surgeries to remove tumors in different parts of the brain over a six year span, the first one when she was 14
She was never actually given any life expendancy. One doctor filled out a form for us for something she needed (can't remember but probably her disability pension) and handed it to me and pointed out that it was not sealed. (He had talked his way through the entire form until one question and then he had looked up at me and went back to filling it I assumed that he wanted me to read it) On the line that said "Prognosis" he had filled in "eventually fatal"

She can’t eat. She uses a feeding tube. She can’t control a number of her bodily functions. But she thrives on the life of Jesus, and her face shone. And God whispered in my ear: “Do you See the glory?”

She was able to enjoy a few bites by mouth of finely chopped or pureed food but not anywhere near enough to keep her alive. She had no control over bowel and bladder, her legs were paralzed. After the surgery they were unable to get her off the ventiator so a "temporary trach" was put in. It was felt that the shorter pathway to the lungs would help with the breathing so that she would be able to breath on her own. That worked but then they couldn't get her off the oxygen. Removing the trach was no longer an option. For several days efforts were made to teach her how to block the trach so she could talk but she was successful saying only a word or two a few times. They checked and found out that one of her vocal cords was damaged. So she no longer talked..(talking had been her passion.. she could talk your ear off with stories about this and that). though occassionally someone would hear a faint "bye"..or "hi". I think that only some very special friends at camp had that honour.

Our dream had been to spend summer at camp as we always had and I was determined it would happen..... but how... our trailer is very small and very hard to even pass someone in it.. How in the world would we carry her through the narrow doorway and get her safely on the nearby bed? We investigated getting another trailer but that was out of our means.
We did not have to worry. What is it the bible tells us about God answering before we even ask???
John Frieson, his wife and youngest child and Sheila came from camp to visit when Deb got out of hospital John told us that the camp was giving us a motel room and meals for the first two weeks of camp. What a surprise and total blessing. That would give us time to see how camp life was going to work and to see how we could adapt things to get Deb into our trailer. We did not have to worry about that either! We were offered the add- a -room of a friends trailer for the rest of the summer. The teenage boys using it were willing to give it up and sleep outside in a tent. Those friends were absolutely indispensible when it came to getting Deb in and out of bed three or four times a day.

The next concern was all the equipement.
5 tall oxygen tanks to be sure there would be enough for a week at a time.
compressor that really heats up space
feeding machine (small and very portable)
Diapers for the summer
Wet wipes
Feeding tube food for the summer
medications..seizure and pain
Syringes for feeding tubes
She would need her wedge for the bed for feeding times, once we had the offer of the add-a-room Terry went home and brought up her hospital bed.
cleaning supplies for the trach which had to be cleaned daily.
suction tubes for the trach (needing suctions several times a day, new tube each time)
suctioning machine
two portable oxygen tanks
The list goes on and on.

I took a whole carload up of consumable supplies and filled the top two bunks in the trailer a few days ahead of time. Then my brother filled his trunk, back seat and front passenger seat and helped us get up there. We had the loan of a van and had ramps to get Deb in her wheelchair into the van. All the back passenger seats were removed and all her equipment went with us, with the exception of the large oxygen tanks, the supply company delivered them directly to the camp and came each week to refill them. We kept two in the add-a-room and two on the deck. we had the fifth one in the chapel in case her portable ones needed filling after chapel was over each day.

Our whole family thought we were crazy... we would be so far from help if something went wrong. But we were fairly sure this was what she would want. She had not smiled for weeks. On the way to camp she stayed awake most of the way (normally slept a lot) and smiled a bit. You should have seen her at the barbeque that night. As people came to say high to her she beamed from ear to ear. My brother sat there with his mouth gapping open, He couldn't believe it. He said he was going home and telling the whole family that we had made the right decision for sure 'This is where she BELONGS!!!!"

We had nursing staff 5 nights a week and would go back to our own trailer to sleep, two way radio by our side.
One night she almost died..... that is another story i will tell you if you are interested but I am running out of time right now.

I meet her father. He walks with great difficulty. He tells me he has Cerebral Palsy, but still works as a custodian at a school.

He does have a limp and on a few rare occassion has had a severe flairup of arthitis in his hips which makes walking hard but not a lot of problems with walking normally. The Cerebral Palsy was not even diagnosed until he took a tumble and injured his shoulder. He was born very premature (they say just over a lb) so it is certainly a miracle that he even lived.

As we talk about the things of the Lord, his face shines, and as he shared his life story with me, one heartache after another spills out. His financial situation is lousy because of the never ending health care needs he faces. Finally he tells me his wife was now diagnosed with the same diagnosis the daughter in the wheel chair had,

I do have the same neurofibromatosis but not at all the same prognosis as Deb. Neurofibromatosis has caused very few problems in my life other than little tumours on the skin and a suspicion now and then that there could be nerve involvement in one elbow.

but his greatest grief, get this, his greatest grief is that his oldest daughter is not walking with the Lord. His oldest daughter is the only physically healthy one of the family.

The tears are overflowing his eyes as he is telling me this. His face is glowing with the love of Christ, because his tears are not tears of sorrow and grief, they are tears of love for the Lord as he talks about how the Lord has sustained him,
God indeed in the ONLY reason we were able to go through this time with such peace. He carried us and sent so many carring people to help in the practical things. Home care had provided the nurses 10 hours/ 5 nights a week.. most came from an hour or more away. They also provided a PSW 7 days a week for two hours each day for her bedbath. She had two different ones but one came the majority of the time. Deb had had this same PSW the previous year. I asked her if she knew anyone who could do laundry for me (we had some support money we were allowed to spend on whatever needs she had) She came back the next day and said she would do it... she was already working 50 to 60 hours a week. Every day I had at least one huge basket . Some days when she was really busy her husband would do it.
the Lord whispers in my ear, “Do you see the glory?”
It shines so brightly I don't know how anyone could miss it!!!!

I met people that week whose circumstances are terrible; whose health problems would put many of us into despair; whose financial lives are nonexistent.
And hands down, they displayed evidence of an abundant life that many others whose lives appeared to be pleasant and “normal” didn’t have.
And I have learned another lesson about what the abundant life really means.
Amen and amen!!!!

Thank you so much for sharing your site with us... and for your story. I means so much to know that Deb's life touched so many people... and it continues to do so even in her death.
Terry and Darlene

Thanks so much for opening up your life, Darlene and Terry. Many of us cannot imagine going through what you have faced. But you are a vivid reminder of the power of God's grace.