I have finally found a moment to sit and contemplate all that I have experienced with my son and all that he is going through. I wish that I could put into words an emotion that fits all that you could feel at one time.
I have often confused myself wondering which emotion is best suited for a particular moment or even for the day.... is it fear, frustration, anxiety, sadness, disappointment, anger, helplessness, joy, excitement, love, or happiness? Then I realize that they are all there, all at once.
When Korbin was diagnosed with type 1 diabetes at 18 months old, it was a surreal moment. As we looked at our little baby lying in his hospital crib bed, we kept thinking, is this really happening to us? They had to have diagnosed him wrong, is he really going to have this for the rest of his life? What did this mean for him growing up? Do I have what it takes to do this? He is just to little to deal with this!
I can't tell you how many times I cried and cried hard because I couldn't even explain to Korbin why we had to poke his tiny little fingers several times a day, why he had to have several shots a day, why he couldn't just eat what he wanted and when he wanted and why I would get so frustrated that he wouldn't eat because he had low blood sugars that could cause a seizure.
I remember syringing orange juice into my son's mouth in the middle of the night until he was coherent enough to chew on something sweet to bring up a bad low. I remember going out to eat and getting upset in trying to figure out how we were going to calculate all of the food he just ate and hope that it was enough to measure on a needle. I remember quitting my jobs because most daycares we talked to would not return our phone calls. I remember my son's first ambulance ride and then learning to hate visits to the ER because they never knew what they were doing. I remember the first time my son was able to tell me he felt low. I was over the moon with emotion because for the first time he was able to communicate his disease with me. I remember the birth of my daughter to be so wonderful but at the same time feeling so horrible coming home to an empty home because my son was being admitted to Primary Children's Medical Center for an illness that made his blood sugars uncontrollable. I remember the first day of school and I know that for most parents, their kids starting school is such a wonderful, happy and emotional moment but all I could think about was the fear I had in knowing that Korbin was the school's first diabetic.
....As the years went by, step by step and year by year the challenges have come and gone. There were some very low times but I always found the positive as time went on and felt like "hey, this isn't so bad. We can do this and it's getting easier with every moment."
Which brings me to now...the diagnosis of yet another devastating disease known as Legg-Calve-Perthes disease. http://orthoinfo.aaos.org/topic.cfm?topic=A00070
The diagnosis came as a blow to our family last year in May 2009. Korbin had just started the baseball season only to learn that he is no longer allowed to run and jump. How do you tell and take this away from your child when he has already dealt with so much? Next came a year of painful days and not so painful days to then learning he needs a major hip surgery.
Of course my son is nothing but amazing and he takes most everything in stride, but it doesn't keep my tears from falling when there are those days that he says, "mom, why did the world have to invent diseases? I don't want diabetes and perthes anymore."
As I looked at my son lying in his hospital bed in agony and pain, I felt anger and frustration that this is happening to him....I can't help but think to myself that this is just not fair, he doesn't need to deal with anything else! Then in the same moment, I look towards the hallway at another mom who is holding her son with a severely deformed leg in a cast and the other amputated and feel ashamed for having such selfish thoughts.
I felt excitement and happiness to see my son out of his hospital bed and into a wheelchair for the first time in three days but at the same time I step back and think to myself....am I really seeing my baby boy in a wheelchair right now?
I watch all the kids running, jumping and playing in the street in our neighborhood and feel sadness that my son is being robbed of this privelage as he sits on the couch watching tv.....but in that same moment a commercial comes on about fundraising for kids dying from cancer at St. Judes Hospital and I am humbled.
As I feel my sore muscles in my back from carrying my son to and from the bathroom, car or up the stairs, or even dealing with the adjustments of my son losing his independence to perform the simple tasks of dressing, bathing or grooming; I can't help but realize that yes I'm sore and tired but it also makes me think about those that have no choice but to live this way for the rest of their lives. It's an empathy you can not feel until you live it.
With all of this information, it leads me to my initial question. "Which emotion should I choose?" The answer is all of them.
We have been chosen for these challenges and I've realized that with each experience our family is getting stronger and wiser but I also realize that I have every right to be mad at the world for what my little boy has to deal with...I'm only human. No it's not fair and neither is life, but things like this make you appreciate it that much more. We all have our challenges and we all deserve our own self pity but in the thick of it all it's also appropriate to remember that things could always be a lot worse. So we choose to embrace, live and learn from our challenges and hope that it helps us grow as individuals, especially as a family. It doesn't make life any easier, just more tolerable.
Last but not least, these challenges don't go without a thankful heart to all of our wonderful and amazing family and friends that show love and support for us each and everyday. I can't tell you how blessed we are to have the people that we do in our lives. During these challenging times we have had the most amazing love shown for our family from people near and far as well as from people who don't even know us. Words will never be able to express the gratitude we wish to get across, but know that we are sincere when we say thank you and that it is from the bottom of our hearts.
