As told from her parents' perspective.
Becca was the quintessential object lesson her whole life. Becca's very first lesson she taught us was that life on earth is not fair. After all if life was fair would she have been born with the broken body she had? She taught us to fight even when faced with overwhelming odds. Becca fought her last battle with everything she had even up to her last breath. Her most precious and lasting lesson is that despite pain there is still much joy to be had. We can remember only a few times in that child's life when she did not have a smile for someone. Even as she was dying just prior to needing to sedate her for her comfort she was still smiling.
Life with Becca developed patience, flexibility, and organization. We could never just pick up and go. The fastest we could get out of the house with Becca and our two other children with no notice was about forty five minutes tops. Well okay maybe thirty if the diaper bag was semi packed from a doctor visit. There were things that just had to be planned for with every outing. For starters we had to estimate the maximum length of time we would be out of the house. Whether for an hour or all day to over night we had to make sure we had everything we needed with us. By everything we are not just talking about diapers and formula and extra clothes like your average baby. We had to have a blanket to lay on and one to cover up with to stay warm, medicine, feeding tubes, water, a pill crusher to crush up the medicine syringes for food plus an extra feeding tube in case the one that was currently in use decided to no longer be functional. If we stayed over night add a playpen to sleep in plus her feeding pump, pole, and bags (1per night) to the list. Despite all of this extra stuff we refused to allow Becca's extra care to prevent our family from enjoying everything out of life.
It is interesting that John's father Celas who has six children and would decide to take them to the beach on a Saturday morning found us crazy. He has said that he could not believe half of the trips that we have taken with Rebecca. One very memorable one was shortly after having Megan, we decided that going on the boat ride in Crater Lake sounded fun. If we had really, I mean really thought about the fact that Tanya was going to carry then three month old Megan in her sling and John was going to backpack Becca one mile down to get on the boat and after all that fun, one mile right back up, we probably would not have dared that venture. However, we are very glad we did, how many wheelchair bound disabled children do you find floating around in a boat on Crater Lake. Another crazy adventure was right before Tanya's grandfather passed away in November 2002. It would have been too crazy to have purchased airline tickets to Houston Texas for John, Tanya, Becca with wheelchair, Megan who was still potty training, and a nursing Noah. We decided that it would be much more sane to drive the 3000 miles non stop. Would you believe that Rebecca actually enjoyed that 36 hour drive?
Becca never conformed to rules, she broke them. It wasn't that she was disobedient, but rather she refused to follow the preconceived medical expectations. There was the way the doctor wanted or thought things should happen, the way Tanya figured it should work. But of course Becca's way always ruled. She first demonstrated this the day she was born. The doctors felt she should not survive and that if she did would have physical and mental disabilities as well as be blind and more likely be a vegetable. Tanya took that proclamation, softened it up a bit figuring she could at least over come most of the obstacles set before her and Becca decided to encompass a little of this and a little of that. She developed the physical and mental disabilities but she was far from being blind or a vegetable! She laughed, crawled, hear, saw and interacted with the world in an amazing way. Then of course was her ability to hear. By all medical definitions the part of her brain responsible for hearing could not. Tanya had the most sophisticated tests run by computer on several separate occasions the results of which all said there was no hearing. Yet everyday interaction showed she could hear. She followed sound, responded to music, she always could find her momma by the sound of her voice. To this day there is no medical explanation for it.
Taking care of Becca meant being okay with getting messy.
Follow this example of a day in the life:
Get up, change diaper and probably bed due to leak.
Give medicine, be prepared for splash-back from g-tube.
Change my shirt again.
Feed other children and husband breakfast.
Send husband to work.
Change diaper again.
Pack diaper bags, other kids need them as well.
Potty other children.
Change diaper again, oh and the outfit probably was leaked on.
Go to the car, get drooled on during the process.
Arive at destination, change diaper again.
Return home, feed lunch and watch for splash-back. Becca thought this was funny.
Change diaper, enough already.
Give late afternoon feeding, same risks.
Change diaper, this one needs ventilation, gloves optional.
Setup night feeding.
Fix dinner for those other ungratefuls.
After dinner, wash the wigglers, read all the children a story or twelve.
Change to night time diaper. Put on pajamas, give medicine and hookup feeding tube.
Crash.
Rinse & Repeat
You don't want to hear what it was like with the trache involved :)
But despite our crazy schedule we always did one thing every night for the last almost nine years. When we hooked her feeding tube and the pump together we removed the protective cap from the end of the feeding bag that housed her food and we saved it. We gave each of you a cap today. That cap represents one day in the life of Becca.
Altogether, much joy and many pains came from taking care of Becca. Tanya loved to be greeted in the morning with a smile and a pat on my arm or face. We loved to hear her laugh and enjoyed watching her siblings antics to make her laugh. Tanya loved cuddling with her on the floor and watching cartoons or a movie. We especially enjoyed watching how other people react to my daughter. She never knew whether or not people were uncomfortable with her but we felt sorry for those who pitied my child. We cannot count the hours of physical care as a pain. It was what was needed. The pain came from seeing any pain in that sweet face. It came from watching her go from a very active toddler to a young child that slept almost all day. The pain of knowing she was dying and there was nothing that we could do to stop it and having to help her fight anyway. The pain of living our lives without her. But in that pain of going on without her comes the greatest joy. I know that she is in heaven with Jesus and I know that she now has a perfect body that she can use to run and jump and dance with. She now has a voice that can not only laugh but form words. Her mind has been restored and no longer has the holes and damage but is whole and capable of thought. This is joy, for what parent does not want the best for their child? So as much as we miss her we most certainly would not wish her away from the peace and wholeness she now has that she is Home and from this joy we also find our greatest comfort. We know that because the grace of our Savior that one day we too will make it home.
© 2006 Tanya Hug