Interviewing my mom about our five years of struggle
"When your children are born you wish for a healthy baby, you wish for them to have all that life has to offer. Your hopes and dreams for them are nothing but out of this world. You wish for their happiness and for them to excel in whatever they choose to participate in. You wish for "normalcy"! Madison started out in this world as an exceptionally athletic child. She was freakishly strong, physically and mentally. She manifested a determination and drive at a very young age. Madison was focused and driven to achieve all the possibilities life had to offer. Organized, a planner, creative and intelligent. Madison has a huge heart and displays great selflessness, always putting the needs of others before hers. Her friendships where not only cherished , but held in high regard. I believe these qualities have enable Madison to handle all that life has recently thrown at her. This journey has, at times, brought Madison to her knees, BUT, she has always found a way to percerveer. Madison's world , as she knew it , was ripped right out from under her. No longer did "normalcy" exist. My hopes and dreams for Madison shifted quite drastically when this journey began. First place medals, gymnastics practices, meets, vacations, prom dates and dresses were no longer important. The ONLY wish I prayed for was for my baby girl was to wake up one day without being in pain!"
Out of the entire 5 years of this medical journey, what was one of the hardest events for you to watch your daughter endure?
"The entire experience was devastating, but if I were to pick a moment when it ALL hit me was when I washed Madiosn's hair. While doing so, clumps of it were falling out. I had to maintain my composure as to not alarm her, nor upset her. For she had enough to handle. It was the final straw for me. I had to step out of the bathroom so Madison wouldn't see me cry. It was then I realized that I have a "sick" child and the severity of the situation." I thought it was so unfair that this amazing, kind and sweet human, who wouldn't hurt a fly, has to not only endure tremendous pain, but loose her hair!. Broke my heart.
2. Did you ever think that when I was sixteen years old, that this is where I would be today?
"Oh God no!...Absolutely not. Your path was on track and so positive."
3. Let's say medically, nothing happened and I didn't have three surgeries... Where did you picture my life as a 21 year old?
"I always pictured you away at college kicking butt on a gymnastics team studying to become a pediatrician. Taking advantage of all the opportunities you planned on experiencing. Never could I have imagined this!"
4. What was your first thought when the doctors told me it was mandatory that I have spinal surgery at 16 years old?
"Back in 2012, my first thought was pure devastaion. I knew surgery was not an easy process. Here is my beautiful baby girl whose life will come to a screeching halt. I was beyond heartbroken that such a young girl had to endure something so invasive. But, you needed to be fixed, so we took on the challenge and forged forward in hopes that by the fall of her Junior year, you would be completely healed and ready for life once again. Unfortunately, that never happened..."
5. What were some of the hardest moments throughout the last 5 years?
"Watching your child in pain, watching your friends slip away one by one, missing out on ALL the amazing things that you do in High School... Madison was not able to mange basic tasks.....I had to wipe my own daughters butt because she couldn't, beyond sad. Can I say that? lol.
There are way too many moments to mention, the entire process has been a series of bad moments. However, here are the ones that stand out. On three separate occasions, I had to watch the doctors and nurses wheel my little girl away into the operating room....those moments will forever be embedded into my brain because the tears and the look on Madison's face displayed fear and heart break. The fact that I couldn't be with her nor help her, Just about killed me. Plus , I knew the horror of what was about to come.
In 2012, the first surgery I felt fear and hope. We approached it as, ok, shell be fixed, out of pain, in physical therapy and back to her life. Well, that NEVER happened. The second surgery was much more devastating because we knew what was coming and we knew what to expect. We chased treatments for a year, to no avail. We wasted an entire year of her life. The fact that we had to start all over again was too much to bear.
Madison was in constant agony. When she "bottomed out", meaning could not take control of her pain, we would have to go into the emergency room and hook her up to an IV drip of Dalaudin, and extremely strong Pain killers. The nurses refused to administer the drugs because she was so young and felt it wasn't necessary. Unfortunately / fortunately the ER doctor was familiar with her situation. Kind of sad that, that is what your known for.
Madison and I made a point of not making her situation the focal point of any social situation nor conversation. If anything, we didn't like talking about it much, unless asked, because we needed a break from it. With that being said, we didn't burden anyone with our problems. Unfortunately, the people whom you counted on and forged amazing friendships with couldn't find the time to send a quick text to say "Hi", or swing by and just hang out, do homework together, or to watch a movie with. This, absolutely destroyed me. I could handle the medical aspect of this journey, but the loss of friendships! That killed me."
6. How did you handle watching your child suffer?
""I always allowed us to feel sad, angry, and afraid for a day whenever we received bad news, which unfortunately occurred too many times. But, the next day we would put our heads together and research new ideas and doctors. I never wanted the past to effect the future. There were days, where the feelings of helplessness and anger were too overwhelming. I tried to not let it consume me because it wouldn't be fair to Madison. I was angry for a very long time. I kept asking myself what did we do to deserve this? Why was my daughter being targeted to endure this horrific journey? I kept searching for answers and couldn't find them. My faith was tested because I didn't get the answers to my prayers. It was always very hard to share this journey with any one because they truly could not grasp the severity of this situation. I found that taking a breather from what was going on, allowed me to be able to approach the next obstacle with more clarity and strength. My advice for other parents is to allow yourself to be sad for a moment, and then pick yourself up and never stop trying. Even though it is extremely difficult."
7. What is one thing you have learned throughout this entire process?
I learned who my true, genuine friends are.
8. Describe this experience in three words:
"F*ck you back, God help me..."
Me: "No like three separate words, haha"
"Oh! well, Debilitating, terrifying, overwhelming."
9. Where do you see me in 5 years?
"I see you being the boss of your own empire! Happily enjoying all that life has to offer and appreciating it more because of how grateful you are to have the opportunity. Possibly living in Manhattan, and out of pain, enjoying the life you deserve."
10. Summarize this entire journey so far...
"As a parent its your job to protect, guide and help your children through life. Throughout this journey I often felt helpless and quite frankly a bad parent! I couldn't help her. I couldn't make the pain go away. I couldn't make her happy and better. I couldn't give her her "normal" back. It has been one of the hardest journeys I have been on. I did by best. It is a journey hard to understand until it is thrust upon you. I pray everyday for painless days and a happy ending. "