Growing up in America, we’re told that with hard work, we can make our dreams come true. It’s apart of the American dream. There are endless clichés to go along with the sentiment: dreams don’t work unless you do, don’t wish for it, work for it.
These sayings make us feel empowered in shaping our own destiny. There’s no doubt that there is some undeniable truth here, but working for your dreams is only part of the equation. Some dreams you can’t work for at all. Some dreams are largely, if not completely, out of our control.
I had a dream. After our son with Down syndrome was born and some time passed, I dreamt of adding another child to our family. I not only wanted another child, I dreamt of the whole package: I wanted a pregnancy with no complications.
My husband and I had it with our first child. When I was pregnant with Violet, I was blissfully unaware of all the things that could go wrong during a pregnancy. Genetic anomalies, miscarriage and lower urinary tract obstructions (all things that have happened since our first pregnancy) were never on my radar.
We delighted in my growing belly. We indulged in the many cravings—barbecue, hot sauce and the occasional late night ice cream run became a humorous and charming part of our pregnant life. Although I longed to have her in my arms, I enjoyed the privilege of feeling her grow inside of me.
With our son, Anderson, I felt none of that. Although I feel differently about Down syndrome today, I was wrought with grief when we found out about his diagnosis. It’s hard to enjoy someone growing inside of you when you are worrying about what their life will be like 20 years after he’s born.
My fears were not only wrapped up in the future, but also the present. What about the higher chance of him being stillborn? What if that happens? It didn’t. What if that hole they see in his heart won’t close? It didn’t. What if he has to stay in the NICU? He did.
Nearly three years later, I find myself with another growing belly and a fear-filled heart. What if his good kidney looks bad today? What if my excess amniotic fluid makes me go into pre-term labor? What if he doesn’t make it?
Every week I see him and every week I’m worried about him. Every week I worry about us. The dream of another uncomplicated pregnancy has not come true. And if I’m being honest with myself, it most likely never will.
I wanted to buy baby clothes without worrying there may not be a baby who will ever wear them. I wanted the unabridged bliss, instead I feel amiss.
I knew it was a tall request. I have friends who have been told they will never carry a child. I have friends who have lost children. But I couldn’t help from wanting, I couldn’t help but to ask.
We’ve been here before—we’ve received many “no’s” to our prayers and have been left with shards of what could have been.
Since I have been here many times before, I know this: When dreams don’t come true, it may be the end of a road, but it’s not the end of all roads. It might be a dead-end, but it’s not the end.
I’m not going to sit here from behind my computer screen and tell you I believe this diagnosis will some how make our lives better. That sweet newborn phase may not be so sweet. For at least a little while, it will require surgery, wires, tubes and casts. The future could land us down a road of dialysis, catheters, and advanced kidney disease.
I wish our dream had come true. I wish our son were healthy. I’m disappointed and scared. But even in my disappointment, I can see that there will be a road to continue on. It may not be the road we envisioned our lives heading, but with each curve there are new opportunities, opportunities for new stories to play out, new doors to open and new dreams to form.
Even though we don’t feel resilient now, I know that we are because we have been here before. When we walked through those flames, we left hot, but not burned because of a strength that was not our own. So, we will put one foot in front of the other and walk down this new road not knowing where it will lead, but certain the pavement will not run out.
I know my blogging has been infrequent, but my Facebook page is active. For frequent medical and life updates, follow us on Facebook, here. Right now, our son’s right kidney looks like it will have no function due to the posterior urethral valve. Thankfully his left kidney looks normal and we are clinging onto that. Normally women carrying boys with PUV’s have too little or no amniotic fluid. This is very dangerous because it does not allow the baby’s lungs to develop properly. In a weird twist, I have too much amniotic fluid. The doctors don’t know why and are calling our case “very atypical” and say they are in “uncharted territory.” I will have to relocate to Houston without my family (nearly 4 hours away from where we live now) when I hit 34 weeks of pregnancy, which will be at the end of June.