My medical history is complex and complicated. Quick version: a genetic, immune deficiency is thought to be the reason why I have had many mysterious medical issues; the loss of my left kidney, hearing loss, and a really scary cancer, Merkel Cell Carcinoma. Like with anything autoimmune related, doctors think (it's still not entirely clear) my body did not make the antibodies needed to fight viruses that caused each of these medical tragedies. There are only 500 reported family cases worldwide of this type of deficiency and, Danielle, my oldest, tested positive for it years ago. She has been in treatment, to build her immune system, for a while. Last Friday we had a follow up appointment and her doctors told us that her treatment wasn't working the way they were hoping. Their practice feels they are out of options in terms of treatments to try. She is at a high risk for cervical cancer.
I have been heavy and heartbroken ever since. Let me be clear before moving on. She does not have cancer. I know how blessed we are. I ran a non-profit for cancer patients for 10 years and watched mothers and fathers bury their children while others celebrated when their child finally went into remission. I am not comparing this to any of that, but my fear is real and I have been sickened over the fact that she could be dealing with a long medical road, like me.
I am a Christian and I do have my faith, but that doesn't mean that I am not a human filled with fear. I am a fall risk every single day. My faith has been strengthened during my own difficult medical journey. I felt God show up so many times. I leaned on God for comfort and fear subsided many times even through really painful experiences, but this is about my daughter and that makes it all so much more difficult.
This week I have felt like I might fall. In prayer, I came to realize that I needed a parachute in order to get through this scary time. Parachutes provide stability. My parachute is a patchwork quilt made up of God, my husband, and a few people that I feel most comfortable being vulnerable around. Danielle needs me to be strong. If she sees that I am upset, she will be upset. I needed to use my parachute in order to find strength again. I had to be smart about how to use my parachute at just the right times to get what I needed in order to feel whole again.
When building my parachute, I turned to God first. I meditated on this scripture a lot this week: Romans 8:28 “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” I have seen a lot of scary stuff in my lifetime, but I have also been able to witness how God turns it into good. His plan for Danielle is not to harm her. She has a beautiful life and I trust that her journey (and mine) will be used to help others. We both want to live our lives for God. Even at a young age, she already understands that she is here to live for God. She loves the Lord and wants to serve. The first portion of my parachute is built with God at the center. He guides me as to how to build the rest.
Soon after our appointment on Friday, I started to research to try to reconnected with the original doctor who used to treat our family (my brother and his kids have this inherited gene mutation too). We stopped seeing this doctor about three years ago when he retired, but he was once the leading researcher of this rare disease. God quickly led me back to him. It actually did not take long to track him down. And guess what? He is practicing again! He came out of retirement and is back at a University which means he is back to doing research!! We are going to Philadelphia next Thursday to meet with him. I believe he will have answers. In scripture I learned that God will give us the grace (and guidance) we need; and in this case, God is leading us back to the best possible doctor to help us. “Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.” Hebrews 4:16. Our doctor becomes a part of my parachute.
I have been crying a lot. When I cry, I usually feel most comfortable around Mark. He is my rock. But, he is not my mother or my girlfriends. So let me be clear. When building your parachute, you must be okay with the fact that each person, who is a part of the collective make up of your parachute, has something different to offer you. He is incredible. I love what he offers me, but I do not go to Mark and expect him to talk to me the way my mother would, and after a lot of years of marriage I finally get it. He is hurting too, of course. We hurt together for our child. We embraced each other. He becomes a part of my parachute.
Next I called my mom. She offers me words of affirmation, love, and a huge dose of encouragement. She spent a lot of time caring for a daughter with a complex medical history, so she knows better than anyone how I feel. She becomes a part of my parachute.
Throughout the week I talk to a few close friends. I know that I am a fall risk and I need to be reminded that God is in control, so I call a friend who will tell me with certainty that God will protect Danielle. I am worried about missing work and what might happen if Danielle needs more treatments, so I call a friend who reassures me that it's okay to put my family first. I also talk to my brother who understands first hand all of the what-ifs. He reminds me not to live our lives thinking about "what-if this" and to instead embrace the present day. He also gives me good advice on treatment. They each become a part of my parachute.
Building your own parachute will allow you to survive when you feel like you are going to fall. But building a parachute with God at the center has become the most important part of this journey. While each person is a part of my parachute and I know who to call and when to call (what a blessing to have such incredible people in my life) there are many parts of this journey I simply cannot control. I need God to be in control. He is the center of my self-created parachute because He controls the motion of our journey. He controls the ups and downs and only He can ensure that after a storm you land somewhere great.
After a really heavy week, I was able to be very strong when Danielle finally opened up to me last night. I don't know that I could have been a part of her parachute had I not been taking care of my own emotions this week. By the time she went to bed, she was feeling hopeful again and I am too.
I would be lying to say that I am not still worried. However, every time I feel like I might fall, my parachute is catching me...and helping me see the world from a hopeful lens; which is how I prefer to view it.
P.S. Danielle gave permission for this post to be shared, and she hopes that her story offers encouragement to someone else.
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