Sweet Sixteen

I am officially old..my daughter Kelly is 16 today. I can't believe it...I often wonder just where does the time go and I have to sit back and try to recreate distant memories of her babyhood, of toddler hood and all of the milestones that have now come and gone. I have watched my baby girl blossom into a beautiful young lady with high aspirations in life as well has developing quite a spunky personality along the way. She decided a few years ago that she wants to pursue a career in biomedical engineering. When I tell people this, they wrinkle up their brow and immediately take on a puzzled look.

"Okay, what is that and why does she want to do that?" they invariably ask. I then tell them what a biomedical engineer does (the different fields that this profession encompasses is astounding from developing pacemakers to creating better and new antibiotics). After I have discussed the what's about this career, I begin to go into the why's of Kelly's decision.

It all begins with my illnesses. I never fully realized just how much of an impact my day to day living with CF and dystrophy had on my children. On the surface, they are much more aware of the fragility of life. They see what I have to do on a daily basis to remain as healthy as possible: seeing me inhaling my slew of nebs throughout the day and via a vent much less, observing my chest physio as well as my regular PT exercises for my slowly wasting muscles, watching me swallow mountains of pills from my seemingly countless array of pill bottles, and more. This is on a good day even, just maintenance stuff. All hard work if I want to stay healthy.

When I get sick, it becomes a different routine. Both of my kids are acutely aware of what typically ensues with each exacerbation of my sickly lungs. First we try oral antibiotics along with nebulized ones, usually to no avail. I almost always progress, and not in a good way. My resident bacteria (mainly cepacia) are just too resistant, requiring the big guns to drop the colony counts, which means two things: IV's and a hospital stay. My kids both know when it is time for me to pack my bags even before I discuss it with them. They see that I am more tired, sleeping most of the day. I am often more cranky and less tolerant of the norm. As I have written in previous blogs, I even smell like the bacteria.

All of this clearly upsets them, they feel helpless, powerless against this disease. They wish that there was something that could be done to prevent so many infections, keeping me home with them instead of spending weeks in a hospital, a few hours away multiple times a year. A few years ago, my daughter announce that she wanted to become a biomedical engineer to help "people like you mom to live longer lives". I was speechless and cried, I was overcome with so many emotions from pride to sadness, all balled up in one...she was 14 at the time, an age when most kids are carefree and learning the ins and out of growing up. Her journey has been a bit more complicated in comparison to most of her friends, she has endured so much already in her young life from separation and divorce of her parents, having a father who is essentially not in her life (which infuriates me, if he lived closer, I would be tempted to drive to his home and run him over with my wheelchair!!!), living with a sick mom, even dealing with a chronic condition herself.

Since her proclamation, she has not changed her mind...she wants to dedicate her life to improving the quality of life in others. She specifically wants to study and create antibiotics. She sees how hard it is to eradicate, even lessen my bacterial loads due to their innate resistance with each round of IV's. She wishes to have a hand in developing the ultimate super-antibiotic. As stubborn as she is, I see great things in her future and am with her every step of the way. I couldn't be more proud of her.

As far as having a chronic disorder, doctors believe that she too has Ehlers Danlos syndrome or some other collagen disorder at the very least. She deals with pain on a daily basis and has to be mindful of her joints as to what she can and cannot do safely and has to go to physical therapy to maintain her strength. So much on her plate, I can't help but feel like much of it is my fault. I gave her the EDS, so yes, my faulty genetics have a daily impact on her life. She worries about me, whether I will succumb to any one of my infections anytime soon. With each milestone that she reaches and I am there to share it with her, calls for rejoicing and appreciation for life. I hate what being sick has done to my kids...I feel like they have been robbed of childhood innocence and forced to grow up faster than any child should.

Today we are going to have lunch and spend some mother daughter time together. I cherish each day I have with her, as I watch her become more independent with each passing day. She wants to take her test for her driver's permit as soon as humanly possible, she does not want to waste any time doing so. A huge milestone that will require lots of patience and sedatives (for me). I no doubt will grow a few more grey hairs as Kelly learns to drive...I just hope that common sense is a strong feature for her when it comes to driving. Some people just don't have that skill, I never thought that my brother would ever become a successful driver because he did lack common sense (at the time). I can't tell you how many close calls he had with bicyclists, ditches and even stone walls. Thankfully as time marched on, his skills improved dramatically, I feel safe riding in a car with him now.

Tomorrow, we are having a party for Kel with all of her relatives and some of her friends. I am making a watermelon cake. It is a cake that looks like a watermelon, I will be sure to post pics of it when I am done making it along with the recipe if anyone is interested in making it. I got it from Woman's World magazine, I normally don't read that but my mom does. One issue happened to have a picture of this cake on its cover and my daughter instantly drooled and requested that it be the cake for her party. The inside is pink with chocolate chips (they are supposed to be the seeds). The outside will be smothered in green whipped cream frosting that is supposed to represent the rind. Along with this cake there will be burgers, hot dogs and sausages with an assortment of different salads. No one will leave hungry, that is certain!

Well my fellow readers, I think that this is enough of an entry for now. I promise to have pics next time. Until then, have a great day and peace. Hugs Jenn :)