Sometimes, It’s Not Polite to Ask…

“When are you guys going to have a second baby?” If I had a dime for every time I’ve been asked this question… let’s just say money would no longer be an issue.

Can we just talk about the absurdity of this question for one second? As most people in our lives are well aware, our son Rowan has N-I-N-E-T-E-E-N different specialists. That’s in addition to 2-hour therapy sessions twice a week, biweekly in-home therapy sessions, routine lab work and radiology scans, plus we are adding feeding therapy back into the mix. Not-to-mention, he’s non-verbal, has muscle fatigue and hypotonia, and hypermobility coupled with insomnia. Should I continue? Because these are just the tip of the iceberg hovering above the crest of the surface.

Most people would never know the half of Rowan’s struggles. There has quite literally never been a better representative for the word RESILIENT than our son. He has overcome every obstacle life has thrown his way–with a smile on his face. He is a happy boy who shows so much love and affection for everyone that crosses his path. God has truly blessed us in so many ways with him. However, the obstacles Rowan has overcome came with the support of a village. He started therapy at just four months old. My husband and I do at-home exercises with him daily. We have learned to communicate without words while still working on speech sounds and sign language. Rowan has a strong desire to be independent and it has gotten him incredibly far. I mean, ya’ll, he’s WALKING! We swell with pride and the world’s largest smiles at that achievement. Not so long ago, we were told that wouldn’t be a possibility until Rowan was at least 4-years old. Now look at him go!

Throughout this journey, I have gained so many titles; Mama (my personal favorite), stay-at-home parent, advocate, blogger, special needs mom–just to name a few–but all of which bring purpose to why I started down the nursing career path fresh out of high school. Rowan goes full throttle when he’s awake, which most of the time is 18-hours a day. He loves his newfound freedom that being mobile provides him, and he utilizes it to the fullest to make up for lost time! Which in turn means he requires ALL of my attention ALL of the time. For example, Rowan’s hypotonia leads to muscle fatigue which then causes him to have stability issues and subsequently leads to falling accidents. Plus, he is an ornery red head like his mama, meaning I can’t take my eyes off him for one second without some sort of catastrophe!

So, back to the question at hand…”When are you guys going to have a second baby?” I can tearfully answer with, “we want another child so badly it hurts, but we have to realistically consider the possibility that it may not be in our future.” Rowan would be an awesome big brother. Not to mention, I would love him having a sibling to look out for him, especially when they would be school aged. I can’t imagine life without my siblings, nor can Dereck. So, I hope people understand, for us, this isn’t a decision we take lightly…it heavily weighs on our hearts.

Let’s talk reality. Having a second child comes with unknowns and an array of genetic percentage outcomes. It means rigorous testing and the label of “high risk pregnancy.” It comes with twice as many appointments and scans. It comes with tears, anxiety, and fear. It comes with insurmountable costs we cannot fathom affording. And ultimately, it comes with the question of, “how would we care for a newborn in addition to a toddler with unique 24-hour needs?”

This is a conversation that Dereck and I have just recently began to scratch the surface of. It is something we have both been avoiding–too scared to speak our thoughts out loud–and that always ends with tears and emotional scars. It wasn’t until the night we both finally admitted to each other how it changed our relationship with God, that we began to get somewhere…We went from questioning to hurting to being angry to confused and now intrigued. We never wondered “Why us?” but rather, “Why our son?” Why does Rowan have to work so hard for things that should come easy to a child his age? Why does he have to spend the majority of his time at specialist appointments and therapy sessions instead of at the playground?

It wasn’t until the first time we attended an event for special needs children that we began to understand just how lucky we truly are. If you ever get a chance to attend one, I urge you to do so–it will very quickly put your life into perspective! Our first event was where Rowan received his gait trainer (walker), and within seconds, I could see our son was the most mobile one there, and at the time, he couldn’t walk of his own volition. We were definitely humbled by that event and forever thankful for the experience. Now we have come from “Why our son?” to an overwhelming feeling of intrigue. God chose us to raise this amazing little boy, who is defying all the odds, and we are in awe as to why he chose us. It’s been a long two-year journey for our eyes to be open to God’s plan, and we’re happy to finally be here–we are a truly blessed family.

There is undoubtedly a grieving process that comes with having a child with any sort of disorder or disease, or for lack-of-a-better word, “abnormality.” As a society, we’re all too familiar with the 5 stages of grief: denial, anger, bargaining, depression, and then finally the sweet relief of acceptance. In the beginning, it is so easy to deny there is something wrong. We chalked it up to prematurity, “Oh, he’s just catching up,” we would say to ourselves. But, as time went on, deep down we knew we were lying to ourselves. Afterall, he was only 4-weeks early. Then the secondary diagnoses piled up with still no true answers or plan of care and anger set in. Next the WES test blood samples were sent out and we began to bargain with God. Pleading with Him that we could handle anything as long as it wasn’t progressive or attached to a shortened life expectancy. Then, we finally received THE diagnosis. Now it was real, it was confirmed, and depression set in. We circled through all five stages over and over and over again until one day, we truly found acceptance. I’d be lying if I said there aren’t still days, and even sometimes weeks that turn into months, that the stages re-start again, but they have begun to lessen over time.

It somewhat amazes me how many healthy, neurotypical children are born each and every day. There are so many factors that have to go just right in order for that to happen. Factors far beyond our control. I want to experience pregnancy again someday because it was truly an amazing, miraculous journey. However, I know I could never enjoy it in the same way as I did with Rowan. We didn’t have any indication that something was wrong until the day I was rushed to the hospital for an emergency induction. I enjoyed my pregnancy without the crippling fear I would have a second time around. And adoption… who can afford adoption these days?! Fostering could negate the cost but how many children would come in and out of Rowan’s life before one child found their forever home with us? As those of you close to us know, we have dealt with the system once before in attempts to get an amazing little boy out of a terrible situation and he was eventually placed back with his biological family. That’s a separate emotional rollercoaster in and of itself. We aren’t fearful to have another child like Rowan. We would be so blessed to have another child with half of his determination and love. But we now know we have a chance of having a child with a progressive muscle disease and CSS has a five-page list of symptoms that are associated and all range in severity. Not to mention the fact that we’re already seeing 19 specialists. Can you imagine that for two children?

Basically, my point is this, it’s not an easy decision for us so please be kind and respectful of that. We know that people mean no harm when they ask and are ultimately just excited at the possibility but it’s a very loaded question in our case. We definitely haven’t ruled it out, but we aren’t ready for another right now either. At the end of the day, God will lead us in the right direction in His timing.

So, all I ask is this, before you ask someone when baby number two is coming, please consider their circumstances and all of the emotions you may be unleashing once you’ve walked away. And always ask yourself, is this a polite question to ask? Is this any of my business?