Some people are medication-dependent.
Some people are wheelchair-dependent.
“Trachies” are ventilator-dependent some or all of the time.
Pretty early on in this journey, while still pregnant with Zion, I had conversations with multiple people: physicians, geneticists and even friends and family who seemed to have an aversion to the thought of a baby with a tracheostomy. I will never forget the conversation I had with a neonatologist and a geneticist not long before Zion’s birth. They of course didn’t say it. But their tone, body language and words about an intubated baby going on to have a tracheostomy was screaming loud and clear. It’s as if they felt that an intubated baby was better off being extubated and allowed to die, rather than undergoing a tracheostomy. I kind of wish now I would have just asked them directly.
Sure, they shared some truths. Your lifestyle changes when you have a vent-dependent child. Life looks different than the “norm”. There are added stressors to the family life. And you will be faced with having to make much more sacrifice at times. It’s a journey not for the faint of heart. It requires strong faith and hope. I’m so grateful we didn’t just stop there at the conversations with the medical personnel. Had we done that, we might have chosen to allow our son to die as he struggled to breathe right after birth. Instead we pressed in to learn more about those who had children like this. And that made all the difference. We were girded with strength and prepared for the future thanks to others who went before us. The intubation and tracheostomy have given us 5 months we never would have had with our son.
Maybe it’s breathing through the neck, instead of the mouth and nose that bothers people. Or maybe it’s the fact that these people often have a long tube connecting their neck to a ventilator, which has to go everywhere they go. Maybe it’s all the medical stuff that must always go with you when you have a vent-dependent child/adult. Maybe it’s all of these combined. But I have learned in my 40 years of life that many people in this world aren’t sure that these children and adults are worthy to keep living. And they have a misconception that life on a vent is a life of suffering. And I can admit, I think I might have felt this way myself at one point in time. But then God gave me ZION.
I wanted to post some photos that inspire us. These are Zion’s “trachie” brothers and sisters across the world. As you can see, they are full of joy, they can do things you might never have thought possible, and they all have immensely blessed their families and those who know them by simply being allowed to live. These are Zion’s heroes, serving as living witnesses of God’s grace and mercy… proving that with Him, all things are possible. Without knowledge that these children exist and are thriving, it’s so easy to be convinced that your child might be better off dead. So I am grateful for social media groups that bring families together who are going through a similar trial. You certainly don’t want to go through this journey alone.
The first photo is of Zion’s “big brother” Gabriel. He is full Trisomy 18, has pulmonary hypertension, is vent-dependent most of the time, and will celebrate his 4th birthday this November! As you see, he is such a happy kid and always has a beaming smile in his photos. His mother has been an incredible help to me along the way, and has sort of taken me under her wing, because Zion has many similarities to her son. This mother has stuck by my side to encourage us to keep fighting for our son, because she now has hindsight that I don’t yet have. God is so kind to bring into our lives just the people we need. Going through this trial surrounded by those who encourage you make all the difference.
When I asked for families to post photos if they were open to me sharing them on my blog, I was overwhelmed with comments and photos. I had so many parents respond, that I decided to just narrow down the photos I would share to the children who are like Zion, vent-dependent all or most of the time (since many children with trachs eventually end up not needing the vent anymore = finally being detached from the tubes!) Why do you think so many eagerly responded to me? I feel safe answering for these parents. They want the world to know that choosing to intervene and give their children the help they needed to breathe was the best decision they could have made. They have zero regrets. And they desire that other children will be given the same chance at LIFE. And so they eagerly share. Creating the awareness is truly saving lives.
Enjoy the photos and know that these precious souls are indeed worthy of life!