Month: December 2018

As the saying goes, it takes a village to raise a child. I can attest truer words have never been spoken. For the most part, that village never quite looks the way you imagined, and our village is no exception. Extending well beyond family and friends, we also have ten different specialists, most of which we see on a fairly regular basis. Several of which have become part of our tribe.

Since Rowan was four months old, he started seeing a physical therapist, AKA mama’s weekly therapist. Together we work to troubleshoot our son’s conditions like mechanics without a manual. She allows me to vent my frustrations and cry when it appears we’ve hit another dead-end. And most importantly, she adores my son. His face lights up from ear-to-ear every time we see her.

Next up, there is Rowan’s occupational and feeding therapist. We started seeing her when Rowan was just eight months old. Like most of his dream team, she experiences the firsts and milestones and accomplishments with us, celebrating in what others perceive as “small victories.”

Recently, the Help Me Grow Program became the newest members of our village. They come to our home to help Rowan get stronger. They work together to help him defy the odds fighting so strongly against him. Just this morning the intervention specialist said to me, “Wow he’s such a rock star! He looks terrible on paper but he just pushes through until he can do it.” Her words resounded in my head. He really IS a rock star. So resilient and determined and yet sure of himself and kind natured throughout all of the frustrations he encounters. This little boy of mine continually amazes me with everything he does. 

The village-member that holds one of the most special spots in our hearts is Rowan’s pediatrician. My husband and I cannot say enough good things about this man. He met with us when I was 28 weeks pregnant to go over all of the questions and concerns we had and continued seeing Rowan since he was born. He treats Rowan as if he was his own flesh and blood, and is determined to get him all of the best specialists available in the tri-state area. He blocks out extra time for our appointments to make sure he is thoroughly updated. He responds to our concerned emails at all hours of the day or night. And he continuously goes far above and beyond the expectations of a pediatrician’s responsibilities.

So many mamas of IUGR babies dread well visits with their pediatrician out of fear for what they will be told. Many pediatricians ridicule them for their child’s slow growth and place uneducated blame onto the parents. I cannot imagine the added stress of not having your child’s care team on your side, cheering you on… And I’m so thankful we don’t have to worry about that. With that said, we have had our share of bad experiences. However, we chose to seek out second opinions, leading us to the right doctors, who are a perfect fit for our needs, and that build us up and steer us in the right direction. 

To Rowan, these people are his family. He knows them well and sees them more than most. For a stay at home medical mama like myself, these people are my friends, conversationalists, and my only adult interaction during the day. Even though all of the appointments and specialists are overwhelming, we are beyond blessed to have each and every one of them as a part of our village, our tribe, our extended family.

To save the best for last, we are also fortunate to have exceptional friends and family to round out our village. The people who help us navigate through it all—the frazzled phone calls, the worried tears, the disappointing medical results, and our cheerleaders when we’ve hit our breaking point. These are the people who love Rowan as much as we do. The family we grew up with, the friends we went to school with, and the new friends we’ve met during Rowan’s journey. During the last 16 months we have met some of our closest friends because they are families going through similar struggles and obstacles. Finding people you relate to and who truly understand the rollercoaster of emotions you’re going through is a beautiful silver lining to our situation.

Even with everyone by our side, raising a child with special needs leaves us feeling like we’re in seclusion at times—shutoff from the “normal” world. I fear leaving Rowan, so date nights are practically non-existent. Going somewhere without the stroller is extremely difficult. Mommy and me play dates, impossible. Friends with toddlers his age want to get together to let the kids run around, but Rowan can’t yet walk like most of his peers, let alone run and play like a typical 16 month old. That doesn’t even take into consideration selecting a meeting location. Take for example the park; he is too small for the infant swings and hates bright sunlight because it hurts his eyes. Restaurant?  Well, picking a toddler friendly venue that also accommodates Rowan’s allergies is a futile task. So, with both those options out the window, we narrow down activities focused on what Ro can do. He can crawl and climb but that’s not really something he can yet tackle outside of the house. So finding another mommy and me play companion who understands all of that, and still wants to make a play date work, is something of a miracle. Yet somehow, I have found a few of those people. The people who I watch our little babes grow up with and play with and become the best of friends with. These kids are some of the strongest people I know and they don’t even know it yet. They say parents are supposed to teach their kids but ours teach us new things every day.

To say the least, we are overwhelmingly thankful to each and every member of our tribe. Rowan has created this amazing village we have and we couldn’t do it without all of them. God knew we needed them before we did.

• 

The decision our little family was asked to make over these last few weeks has been one of the most difficult to date… It was a decision we didn’t want to have to face, that could change all of our lives with the stroke of a pen, and that seemed to have an infinite list of both pros and cons: Did we want to include secondary findings in our whole exome sequencing results?

Let’s back-up a little bit. Whole exome sequencing—the most comprehensive genetic testing available today—offers secondary findings with its results that include a menagerie of potential conditions in addition to what you’re actually getting tested for. Essentially, they report mutated genes that have been known to make some people more prone to having certain types of cancers, aneurysms, heart conditions, drug interactions, and the like. While there are treatments available for most of these things if caught early enough, the majority of these “findings” are for issues that effect you later in life. And, to add more pressure to this decision, they will not begin testing without an answer—and there are no-take-backs. All decisions are final.

Here’s the thing, I am a worrier and stress about everything—and no, it doesn’t matter if it’s over something I cannot control. I dwell on things longer than I should. I lose what precious sleep I should be relishing in. I obsessively Google in search of the “right answer.” And now I’m supposed to decide if I want results that could say my 15-month-old son has a precursor for cancer?

Having previously worked in the medical field, I am a believer in actively taking control of your health and wellbeing. So naturally, my instinct is to find out everything I possibly can by getting these secondary findings. I mean, why wouldn’t we want to know? My paternal grandma died of breast cancer at 62, and I see so much of her in me. My maternal grandpa died two months before I was born from lung cancer, and he was just 53. My husband’s paternal grandpa died far too young from cancer as well. So obviously, if the science says cancer is genetic, we likely have an increased risk given the toll cancer has already plagued onto both of our families. But at the end of the day, can we handle being given a report that turns what ifs into whens?

Decision time… What does getting a positive result mean? Yearly screenings? And does that yearly screening help us sleep at night or would we live in a constant state of fear knowing a positive result is likely inevitable? Oh, and by the way, we had to make this decision three times: once for Rowan, once for Dereck, and once for me. It’s hard enough to think about a positive result for Dereck and myself as adults. But can you even imagine a positive result for Rowan?! The doctors can’t even diagnosis him with things actively affecting him today, now we need to decide to get results about something that won’t even affect him until he’s in his 50’s?

The decision was easy for Dereck; he firmly did NOT want to know—for any of us. Me on the other hand, I wanted to know for him and I but for Rowan, I only wanted to know the potential drug interaction. Shockingly, picking and choosing which secondary findings to get results on was not an option— it was ALL or NOTHING.

After research and discussions and pros and cons lists, the ultimate deciding factor came as a surprise… I was reading what felt like the millionth informational sheet and consent form they sent to us and this statement caught my attention: “Insurance may deny you life and death coverage based on your medical record. If you choose to know these findings, they will become part of your medical record.” Hello game changer! To say the least, I was baffled. How can insurance deny you coverage based on a possibility?! Rowan, a baby who’s barely a year old, could be denied insurance for basically his entire life?! You would think insurance companies would be happy to pay for screenings to prevent drastic measures later in life but no, that’s clearly not the case. Insurance companies will never make sense to me, that I am convinced.

So, after weeks of back-and-forth on what to do, we chose to not know for all three of us. Despite the greed of our insurance companies, I’m still not convinced we are meant to know these things… My faith tells me that only God knows our outcome. The worrier inside me is questioning not looking into the crystal ball. Did we choose to live in ignorant bliss? Maybe. But, at the end of the day, this decision had nothing to do with testing Rowan for his current care. That’s the thing about this journey; you never know what will be thrown your way as much as you try to prepare yourself. You just buckle up and go along for the ride.