An old friend, whose now more of an acquaintance, asked me once, "You wouldn't really want to raise your daughter all over again, right? I mean, you say you would but is that real? Look at all the things you have gone through. It's almost like you have to say that."
I appreciated his candor because it helped me realize three things. It allowed me to see he has really never had pain in his life in regards to a child, that I would do it all over again, and that asking "would you do it all over again?" is a selfish way to view things.
We (more so my wife), went through a pretty normal pregnancy. It was the day of the birth that things became a challenge. Our daughter was diagnosed with Down Syndrome. This wasn't the challenge per se while a surprise and an unknown, this in itself didn't really challenge us. It was the all the medical issues that often come with the Down syndrome diagnosis. There were several: Laryngomalacia, Hypotonia,ASD, Micro Aspiration, Infantile Spasms.
In the first few months of her life, these issues put our daughter in the hospital for over a month. When she turned two, she was diagnosed with AML and ended up going on ECMO because of an infection she received during her chemo treatment. It was during this time we came close to losing her.
I share none of this for pity or to be prideful. I share it to let you know we have experienced pain and challenges with our daughter, yet we would do it all again.
You see, while we cried, fretted and worried, she smiled, laughed and played. She experienced all this pain while we were only bystanders. There were so many times we wanted to change places with her, but we couldn't. We could only watch her suffer through these many things. Sure, we could rock her to sleep, sing songs to her, but we had to stand by as she went through it all.
The question is not would I have my child again. Of course, I would. The question should be would I change all the things that have happened to her.
Would I change that? Yes. I would never want any child to go through what she went through. Would I want a parent to go through what my wife and I have gone through? Possibly.
As we stood by our daughter, we shared an experience that one doesn't often go through. This experience brought us closer together as a couple. It didn't matter that we were tired or frustrated about something; we were focused on a helpless child who needed us advocating for her. Out of love for another, my selfishness needed to be put aside. More than anything else in my life, I think this changed me for the better.
This type of experience isn't for everyone. Sometimes people aren't ready to give up their selfishness. When they aren't ready, broken relationships often happen.
Even as I write this, I realize the conundrum. I don't want a child to go through this, but I wouldn't change the way I have changed as a result of my child having gone through this, and I value that change. Maybe a few lessons can be learned through being a bystander to your child's pain.
1. It's not about you; it's about them
Your kid is hurting, so don't be selfish about things. The sooner you can think about them more than yourself, the better.
2. Learn from the experience
This is an opportunity to find out who your are under pressure. Do you like what you find? If not, change it.
3. It's OK to cry
Weaklings aren't the only ones who cry. It's natural and expected when someone you love is in pain.
4. Don't be bitter
It will be easy to resent people who say they support you, but then never lift a finger of support.
5. Most people won't understand how you have changed
This event happened to you and nobody else. Your life changed, but theirs stayed the same. It's OK to tell your friend this because it will help them understand you better.
While experiencing each of these steps, remember to recognize the value of the process amid the pain. Within that experience lies growth and strength not just for your courageous child, but for you. Those lessons will sustain you as you provide strength and support to those you love.