The story of Beth
My Child has been diagnosed with a fatal disease, Now What?
Many of you will understand and remember well the moment you were told the news that “your child has…, this is a fatal disease.” Fortuntley most of you won’t have any idea the effects of these words have on the life of everyone that loves this child. Although I realize that every diagnoses is different and every reaction to the news is different I am going to share our experience after being advised that our daughter at 8 months old was diagnosed with Cystic Fibrosis. Cystic Fibrosis is a fatal genetic disease that affects approx 3500 people in Canada, the disease attacks each person differently due to the 1000’s of different defective gene mutations. Generally people with cystic fibrosis battle chronic lung infections, digestive issues, and have a considerably shorter life span than most.
The words Madi has Cystic Fibrosis rocked our world, to say the least. We were devastated, frightened beyond belief. We knew very little about the disease, about the management of the disease or how our beautiful 8 month old daughter would be affected by it. Sitting in Sick Children’s Hospital in the Clinic specific to caring for the children with CF in our area, learning more than we cared to know about this disease, having our hearts wrenched in our chests while we looked at flip charts, watched equipment demonstrations and learned that we were about to begin a battle for our daughters life. We drove home in silence, tears running down our faces, while our beautiful baby girls sat blissfully ignorant in her car seat smiling back at us.
Once home the tears continued to flow, “How would we do this?” “ Could we do this?” Our life was forever changed that day. No longer did we “sweat the small stuff”, having something like this dropped on your plate certainly puts things in perspective pretty quickly. I will tell you though, you have to put on your “big girl and boy pants” and move forward.
We did this, but it hasn’t been an easy road. When someone in the family is diagnosed with a life threatening illness the entire family becomes “sick” . Thats not to say that it devastates the family, but a diagnoses like this is something everyone in the family unit must learn to cope with. Everyone in the family will deal in their own way, the dynamics will be forever changed. Guilt is an emotion that I live with daily, guilt that I contributed to the illness of my daughter being a gene carrier, guilt that I know longer am able to devote the same amount of time and emotion to my husband, guilt that my older daughter is often made to be without me because I am away in hospital with Madi.
Once we got our heads around our new reality I tried to learn all I could about the disease, don’t get me wrong I didn’t burn up the internet trying to find “the cure” to a disease that is still looking for a cure. I did however ask a lot of questions of the Dr’s and nurses caring for Madi. I asked what I could do to make sure that she was receiving the best possible care I could provide. I remember very early on being totally overwhelmed with the unrealistic expectations I was putting on myself in caring for our sick baby. Every sniffle, every cough caused panic, having my head against her tiny chest trying to figure out what I was hearing in her little lungs. One of the biggest lessons learned, one that lifted the biggest weight off of my burden ridden shoulders was when I called one of our nurses at the hospital, Madi was very symptomatic coughing, congested and I was very worried, I told the nurse I need to get a stethescope and learn to use it so I could listen to her chest. “You are Madi’s mom” said the calming voice on the other end of the phone, “if you are concerned we have a team here that will look after her”, “you just need to be her mom.” After that call my shoulders dropped about 4 inches, I re-evaluated what my role in this babies life was going to be. I could not control the illness, I could not control the effects the disease would have on her body, I could not make her well when she was sick, but I could be the best mom I could be for her.
I remember so vividly talking to my sister shortly after the diagnoses, “why you guys she said? You are such a great family. Their are so many drug and alcoholic families out there, why not them?” Without hesitation I responded, “where would she be with them. She was born into our family because we can care for her.” I believe this, we are doing this, its not easy but we are doing it, and successfully so far.
So my mandate going forward would be to manage what I could for Madi , which meant staying on top of the regular care I would provide I would make sure we followed her Dr’s advise (now we are fortunate to have a fabulous team we trust, if this is not someone else situation that would be a place to start). I would try to do the best job I could caring for my older daughter showing her love and understanding and keeping the bar just as high as it was previous to finding out Madi was sick. Yes she was certainly going to have to deal with more than most children have to deal with, but this was not going to be an excuse to not be all she could be. I would do the best I could to care for my relationship with my husband, this has been a struggle as I sometimes feel like I have let him down, often feeling empty from taking care of business. He has been a rock, working very hard to make a life and home that we love, generally having to deal with being on the bottom of the list. We have hung in together and work to make improvements to our relationship as the girls get older.
So 14 years into our journey Madi is thriving despite her illness, she requires hospitilizations a couple of times a year to treat the relentless attack to her lungs, and she now takes on a lot of her own care i.e; twice daily physio and enzyme therapy. More than this though Madi has grown into a force to be reckoned with, she is stronger than most adults I know. On top of taking care of her health, Madi has come to thrive as an advocate for Cystic Fibrosis Canada as well as We are More, a sub brand of Global Genes a rare disease advocacy group out of California. My oldest daughter Jessica, nearly 18 has made us proud as well. She has been an honour roll student throughout school, she has been involved in many different adventures including taking part in a mission trip to Nicaragua to work with children. Jessica despite possibly feeling “back shelved” at times due to Madi’s illness has chosen to thrive. My husband and I are together and planning for retirement together after 20 years of marriage, no small feat considering our circumstances.
Our journey has many more pages and I will continue to strive to make it the best journey we can possibly have. This diagnoses has shown me that we CAN be stronger than our struggles, we can live a happy and fulfilling life despite the bumps in the road. So if that heart wrenching diagnoses comes and you ponder “Now what” you can say now I will be strong for my family when I feel weak, I will gain strength each time that I call upon this strength much like training a muscle. Now what? will mean jumping in with both feet, learning as you go, recognizing despite everything else you can be a mom and love that child like know one else.”