When asked about their baby's gender, many soon-to-be parents will say, "As long as they are healthy, we don't care." But what happens when they aren't healthy? What happens when your world gets flipped upside down and turned inside out all in one day?
You. Deal. With. It.
In one day we went from thinking we would have the regular boring family with a typical child...that we would continue on with our mundane quiet life where nothing interesting ever happened. But then we got the news that our daughter has Down syndrome with a long list of further disabilities. That wasn't a consideration in our lives. No one grows up thinking, "I want to have a child with special needs when I grow up." But she was on her way and we were in for the ride of our lives.
After she was born no one warned us that we could be robbed of the initial new parent experience. Coming home with a beautiful newborn, staying up later at night for feedings, sleep exhaustion....I actually miss the fact that we didn't have any of that. Instead we were driving 2 hours roundtrip to the hospital each day, multiple times a day for visiting hours in the NICU. We were taking CPR courses for medically fragile newborns. We were learning more medical terminology than most people would have to learn in 5 lifetimes. Violet, our daughter, needed open heart surgery 5 hours away at just 5 weeks old. She needed emergency surgery just three days after her open heart surgery. Transferring between hospitals, recovery time, more surgeries for putting in her G-tube....every day was medical terms. Every day was wires, postpartum depression that you didn't want to speak about because everyone needed you to be super mom. They expected you to be super mom. There was no time to sit and digest what was happening. You flowed with the ripples. One tiny thing turned into something slightly larger. That ripple turned into a larger one...and they kept expanding.
Our first year was filled with surgeries, hospitals, physical therapy, occupational therapy, feeding therapy, vision therapy, doctors' visits at least 4 times a week, emergency room visits on average once a week. Traveling 10 hours roundtrip to see her doctors. It was a never ending sea of nurses and doctors. But you deal with it. At the time it doesn't feel like you are doing a very good job. You feel like a failure at every tiny little thing. You beat yourself up over a missed medical diagnosis...even though you aren't a doctor and you aren't a nurse. You still beat yourself up.
The ripples in the water, they were drowning me. I was scared, exhausted, lonely though I was surrounded by thousands in our support community. At the end of that first year the ripples started vanishing. They smoothed out and our life started getting a bit easier to manage. We measured time in, "it's been 2 days since her last seizure." We celebrated when she went 6 months without a surgery. We rejoiced at a year and a half old when she had her first week with no doctor's appointments that week. There was a light at the end of the tunnel and it was glorious.
But through all of this, though the fear and pain that we endured as a family was enough to make the strongest souls have PTSD...there were so many beautiful moments in there. She surpassed what every Dr said she would never be able to do. I never imagined that I'd be posting about how wonderfully excited I was that at 3 years old my child learned to suck on a straw. But that too was a ripple. Because when she learned to use a straw, she started to learn to drink by mouth. By learning to drink by mouth she is getting one step closer to having her G-tube removed.
That was the biggest learning experience since becoming a parent. There will always be ripples. It's inevitable. But learn to coast along the surface of the water and ride them out because soon the water will turn as smooth as a piece of glass and you can stop and breath again. The good ripples you cherish. The bad ripples you learn from. But either way, you deal with it. Because not everyone gets a healthy child. Not everyone gets the life they expected. And that's OK. Our life was turned upside down and turned inside out and we survived it. It's tough, it's exhausting, it's lonely and often sad. But it's also magnanimous, beautiful and full of so much love that you feel your heart could burst. We still get bad ripples and we allow ourselves to grieve for a day. But after that first day you put on your big girl pants and you move on. You plan, you deal, you prepare. You build a boat so the ripples don't take you down. Because now you are strong enough that you can float over the ripples. You can, and you will.
(photo by Lotus Buccola)
She's 5 now. We didn't just get ripples this year, we got a tsunami. She's now in a wheelchair and we found out she needs multiple additional open heart surgeries. But we've got this. We've made it through before and we will figure out a way to make it through again. She's a fighter. A survivor. And you know...I might just be one too.
So for all the parents fighting the ripples, chin up. There are plenty of us out there willing to let you in the boat!
(photo by Lyn Taylor Photography)
(I would like to add a special thanks to Violet's multitude of special NICU nurses, her amazing Pediatrician, her wonderful Pediatric nurse, her savior of a heart surgeon, her entire cardiac team and her entire early intervention team. You have all fought along side Violet every single step of the way. Thank you.)