Last week, I shared a video of my girls on Facebook. I made this video as a way to share our story and raise money for the Cystic Fibrosis Foundation. Within 5 days, I guess you could say it went “viral” to the point that it was picked up and shared by “Cystic Fibrosis News Today” without me even realizing it. It was shared on their website and on their Facebook page. I immediately felt shocked that it had made it to this stage! But I was not prepared for the comment I read next.
“Selfish” was the word she used. Direct quote: “I will never understand how a parent(s) could be so selfish having more Children hoping to have a (normal) one.”
As I read this, one time, and then another, and another, I just sat…stunned. Heart pounding faster and faster. Face hot. Pain in my stomach. I couldn’t move. I didn’t know what to do next except read it again. Why would someone say that!? A complete stranger, who doesn’t know my children, and doesn’t know me. She has no idea what a wonderful life those girls have. Did she know that the mother of those 2 children would read that? Did she even think of how that might make others feel? I’m sure she didn’t imagine that she made that comment on that little girl’s birthday and that the mother of those two girls would read it as she crawled into bed after an amazing day of celebrating. That she just virtually slapped that mother in the face bringing her to tears after a really good and much needed day with her family. Did she realize that her words would stick like glue in that mother’s mind for days on end and that she would have to hold back tears as she played with that baby she was accused of selfishly bringing into the world?
This really hurt. I felt under attack. Ashamed for putting my family out there as a target like that. Embarassed. Even guilty. I actually thought to myself, her thoughts are fair and I know she is not the only one to share that sentiment. But it HURT and I still felt angry that she would say it outloud, as a public comment on this video of my precious children! As I read it again and again, I realized her comment was less about me and more about her own broken heart. In her comment, she also added that she had lost a grandchild to CF last year. She is clearly angry and has seen the ugly face of this disease in a way we have yet to experience. So I give her grace and forgiveness. Her honesty hit a nerve but I am no longer mad. While this was the first time I have heard someone say that, it was not the first time that thought has crossed my mind. I will take this opportunity to caution others not to judge. It is easy to say never until the decision is yours to make.
This woman’s words and my curiosity of what others think now replay in my head on a daily basis. My husband and I have both been tormented questioning the decision we made and this has only added to the pain. We agonized over if/how/why/when to have another child for a long time. It was an overwhelming and stressful few years as we went through this and the decision we made still hinges near regret at times, simply because having two children with CF was not what we wanted or expected. But then I look at our happy baby and I do not regret a thing. I wish she didn’t have CF, but I do not regret having her. And I do not believe having her makes me “selfish”.
So, why would someone think it would be selfish for a CF parent to take a chance and have more children, knowing there is a 1 in 4 chance of having another child with CF? To me, this implies they believe the quality of life of someone with CF is not worth having. That living with CF causes too much suffering, therefore, a parent shouldn’t bring a child into the world knowing there is a chance they would have to endure the ramifications of that disease.
So here are my thoughts on that…
This world is FULL of suffering! If we were selfish in having more children, then the same should be true for everyone else who chooses to have children. There is sin and suffering and brokenness everywhere you turn. As a Pediatric Nurse Practitioner, I have taken care of a lot of children with a lot of different things wrong with them. I have seen A LOT of kids suffer. And my kids, though they have Cystic Fibrosis, are NOT suffering. They have more to do on a daily basis to stay healthy than most kids their age, but to this point, my husband and I are carrying the burden of their disease, not them.
There are children living with depression, in broken homes, with parents who abuse drugs and alcohol and each other, kids who have been shot at and who witness violence on a daily basis, and those who are physically, emotionally, and sexually abused. There are kids who live in poverty and hunger day in and day out with no hope in sight. Kids whose parents belittle them, never spend any time with them or show them affection. Children who are kidnapped, sold into slavery, and who have parents die. There is childhood cancer, heart disease, obesity, bullying, autism, anorexia, ADHD, severe asthma, diabetes, Crohn’s disease, IBS, Cerebal Palsy, Down’s Syndrome, epilepsy, spina bifida, metabolic disorders, migraines, disfiguring skin diseases, behavioral and cognitive disorders, kids who are blind, deaf, paralyzed, severely injured or killed in car accidents, and the list goes on and on. If we are selfish in having another child who may have CF, would it not be selfish for any parent to have a child knowing they are at risk of having any number of things wrong with them or happen to them? I do not believe either is selfish.
Bringing a child into this broken world guarantees that they will experience suffering at some point in their lives. It also guarantees that they will die at some point. Of something. There is no point in comparing whose lot will end worse.
Because our girls have CF, we do happen to know that they are at a greater risk of living a life of hardship and having a shorter life than most, but that doesn’t mean that this secures their fate. Nor does it mean that the things they have to do to stay well will rob their life of happiness or make it not worth living. And just because you aren’t given advanced notice of long-suffering, doesn’t mean you aren’t going to experience it! We are all mortal and no one knows their fate.
We chose to give two precious little souls life on this Earth. Yes there is some self in that equation because their lives have given us an immense amount of love and happiness that we never would have known unless we had them. But we also believe God intended for them to be here.
“Before I formed you in the womb, I knew you. Before you were born I set you apart…” Jeremiah 1:5
“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139:13-14
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11
He is the one who created them and chose us to be their parents. So no, it was not a selfish choice for us to have them. They are now a part of this place, and though they may suffer at some point, I believe it will pale in comparison to the joy they will experience through love, and friendship, and beauty, and the wonder of this world God created.
For all of us, our time on Earth is temporary. We were created for something greater – a life everlasting in heavenly realms worshiping our Creator. I am thankful there is much more waiting for us when our time on Earth is done. Because of the sin that entered this world, there will always be suffering here. And it is universal. I believe in a hope that covers any suffering we may have to go through while living in this world with sin running rampant. That hope is in Christ and his saving grace. I believe that is the only thing that can offer joy in the midst of suffering and give us assurance of eternal life.
“For God so loved the world, that he gave his only son that whosoever believes in Him, should not perish but have eternal life.” John 3:16
“We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” Romans 3:5
I don’t just believe this because it’s what the Bible says. I have personally experienced joy through times of suffering and I still felt God’s love and goodness through those times. Even in the moments of my greatest suffering, when connected to a breathing tube unable to move or speak, I knew I was going to be okay. Even if my time on this Earth had passed sooner than I, or my parents, had planned, I would have been okay and rejoicing with my Savior in another world free of suffering. And that is my greatest hope for my children. Not that they will live a long time, but that they will live a life of joy, secure in their relationship with a loving and protective God.
I do not believe my daughter will ever look at me and tell me I selfishly chose to have her. Instead, I think she will thank me for giving her life.