Six Years of Childhood

I was traveling this morning and ran across sohoman.blogspot.com.

I read through some of his words, feelings really; and they triggered old memories.

When our eldest child was 6 he was diagnosed with a rare form of a rare (then*) blood disease. For a "rare" disease it was normal that a child would acquired it and could then go through it relatively unchanged, recovering unaided within 6 weeks. Then the secondary group of kids who would recover aided via steroid and drug therapy. Third group: recovered after therapies that involved "unproven drug therapies". Our son was in a 2% group that was totally unresponsive and would "never recover" and have potential for fatal repercussion. He, as a result of the disease, had a dangerously enlarged spleen, extremely low platelets, high white count, constant severe bruising, spontaneous bleeding - internal/external, extremely lowered immunities, acquired Hep. C, Cytomegalovirus, pneumonia several times a year, viral meningitis, and other complications that kept him out of school for 3 years and then some, and away from church and social situations (read: pretty much any where but home). Blah, blah, blah.

We set our lives on auto-pilot and went to hospital/clinic visits (1 hour commute one way) sometimes daily and most often at least twice a week, for six years. During this time we prayed. A lot. We pleaded with the Lord to relieve our family from this disease, to heal our little boy, to make everything right again. Once in a while we would throw in a "if it be Thy will", but I'm being honest here - I wanted my miracle, not His will. I did however, maintain my faith through it all and I (looking back on it now) can't remember ever being "WHY ME? WHY US? OH CURSES!!" and being angry with God. I remembered that everyone has their trial and all that, this was just one of ours. (there would be more) I definitely had my "please feel sorry for me" pity parties and there were times when I was so tired of it all I just went silently crazy. I can remember burying my child several times and rehearsing in my head how I would explain to younger siblings that he had died. I would breakdown and cry almost every month in the shower - especially after a particularly hard treatment or exam (lumbar punctures and bone marrow checks were devastatingly painful to witness, and much more painful to go through as my son had to).

There were those who tried to comfort us, me. They would call and chat and visit when appropriate. I looked forward to these angel friends. They saved us many times just by showing up and staring with us into the green hued light of a sterile room. There were those who seemed to delight in our misery. They would point out that if we were truly faithful the Lord would stretch forth His mighty hand and cure our son. Thanks. That helps. The truth is -and I understood this then- that the Lord is in control and although having faith is a good thing, unless I have the faith of a prophet, I wouldn't changed the Lord's plan in this matter. Tough luck, too bad, stinks to be me. This was a nice test and there you go. Deal with it. The words still hurt, then, and still now. Don't tell me I do not have faith when it comes to my little boy. I wanted to hurt this person back, but there is no equal to the pain her words caused. So move on.

We were in and out of the hospital so many times we had a specific room assigned just for us. The nurses knew us by name. The doctors were open and friendly. The routine became routine. Pajamas were home made so that he could have firemen and dinosaurs, trucks and other fun prints on his bleached and funky smelling hospital snap up the sides IV accessible nightwear. Special body pillows to alleviate the bruising of his body and bloodied nose just from his turning in his sleep. Mornings would be met with mouthwash to rinse the blood from his mouth so he could taste his breakfast. "Mint flavored everything in the morning." Hugs were forbidden at times because of the bruising. A spleenectomy was suggested, but his platelets never rose high enough to accommodate the surgery. And there were no trips to parks or slides or swings or school with chums. He was home schooled by a grumpy old lady who came twice a week. Eventually his levels rose enough to merit some activity, and then they would drop and he would be pulled from having a normal kid life a again.

Year six met us with quite a surprise. His levels began to rise. Each week a little more until he had enough to seem like a remission. Time was now monitored and eventually he was in a "remission". After a year they called it a full remission and we were allowed to come in for check ups once a month, then every 6 months and eventually once a year. Now there are blood counts and checks for various diseases every 5 years. So far so good.

He's married now. Almost 18 months. He still has some minor situations in his body that are directly linked to his childhood disease. But he's a big burly fireman. One of those that was on the first strike team a few years back when CA was on fire. His team was right there next to the team from up north, the team that lost one of their men down saving San Diego. My son fought 40' and 50' flames in the hills above Claremont, then San Berdoo, then San Diego. If they needed a strong team of fire fighters, they sent in my son's group. He's my hero.

Heavenly Father has a time schedule and a plan for our son. Our son is one of the healed. He is a miracle. There are moments when I am plagued with guilt because he was healed while other little children, some with more terrible diseases, grew up and are still tethered to the clinic, the 4th floor, to seclusion, to IV poles, to not being big and burly. These little children and their families are still in my heart. They are still heroes to me. I know their hope and they trial and their faith. I know that there is sometimes nothing left to say or do, but breathe in the sterilized bleach scented air and gaze into dotted ceiling tiles. Learn how to run and repair your IV pump. Find all the words hidden in the letters of your disease. Mentally destroy all your "mean white cells". Count the squares in your room, the holes in the curtains. Rent a video. Pray for the hug that can come when the count rises. Eat chocolate-hazelnut tofutti. Scare the nurses. Race in a wheelchair when no one is looking. Knock on the morgue door after 9 p.m. Replace the urine specimen with apple juice and drink it in front of the lab tech. Have your mom paint a smiley face on your tush with lip stick for the night nurse to find. Decorate your room, you're going to be there for a while.

There are other children who face different challenges. I feel empathy for them, their families, mommies and daddies. My hope is that they know they are not alone and that they are receiving hidden gifts and blessings. I pray for their strength and knowledge of eternal truths. My heart stays with them all.

Thank you to the friends we have. Thank you Heavenly Father for saving the little boy who now saves others. Thanks for the whole experience that helped our family stay together and prioritize what really matters.

* Idiopathic Thrombo Cytopenia Purpura or I.T.P. - I.T.P. as stated above, is usually a very harmless and dull disease in which patients basically recover without incident in about 6 weeks; and thus go unrecorded. Back in our day, not one case had been recorded in Southern California for 14 years prior. Severe cases such as ours, required hospitalization and treatment. Less severe recored cases require in and out patient treatments. By the time we were into 3 years of the disease there were 12 more boys in the same hemotology/onocology clinic. Idiopathic defines this as an unknown cause for disease. We believe it is environmentally charged as the disease is claiming more and more children each year. The cause is unknown, however boys seem to have a higher incident of illness than do girls. There is a strong indication that one acquires I.T.P. after a severe lung problem, such as a strong cold, or pneumonia. This was not our situation; we had no illness prior to the discovery of this. Although our son continues to have severs colds, allergies and bouts with pneumonia on a regular basis. On the plus side, he also has a more efficient use of his lungs, which enables him to use less air than most people in a similar situation. This is a good thing for a fire fighter using an air tank!