Author: admin

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.

“We will send this off to insurance and once approved, it will only take six to eight weeks for results to come back.” We have heard this statement on six different occasions now. In case you were wondering, it’s never “only six to eight weeks for results to come back.” And for Rowan’s next round of testing, the expected turn-around-time is six months. SIX MONTHS—as-in half of a year… Have I mentioned I’m not a patient person?

Once we go through the hoops of insurance approval, sample collection appointments, and sample procurement, the clock starts. The clock that’s impossible to get off your mind. The clock that ticks away at a snails pace just to mock you. The clock that feels like an eternity has passed from second to second when talking in terms of weeks—but now months? I suppose I should become accustom to life without sleep.

Here comes the wave of what ifs… What if the results are positive? What will that mean for his future? But what if the results are negative? Will there be more testing? What will the time on THAT clock be? Is a negative result the goal? Is it a relief?

Contrary to popular belief, a negative result is often our biggest fear. While in some cases it can be immensely relieving, most of the time, it means more testing, more waiting, more worrying, more tears, and most frustrating—no answers. I feel as though I’m stuck on a carnival ride, screaming to be let off, but failing to be heard as I endlessly go round.

Don’t get me wrong, in the beginning the quicker the negative results pile grew, the more ecstatic I became! I thought, we’re just going to get all of these tests out of the way, and with time, they’re going to find out that maybe, just MAYBE, there is nothing wrong with our son. Maybe he’s just catching up from being a preemie. Maybe he’s just stubborn. Maybe the doctor’s are overreacting. But as time went on, the problem became the hope we held in “maybe.” At this point, Rowan is collecting more than just negative results—we have specialists, therapists, doctors, and more. And it’s become glaringly obvious that something is going on. I just wonder how much longer until “what” is revealed.

I think it’s a common misconception that no news is good news. For instance, if there isn’t a diagnosis, there isn’t anything wrong, right? I used to feel this way, but it was short lived. Ultimately, the unknowns can be more terrifying than the reality that lies ahead. How can we help our son with his struggles if we don’t know what those struggles will be? 

Geneticists and Genetic Counselors have told us that there is gene therapy for some conditions if caught in time. A neurologist has told us that if it’s a muscle energy deficiency, there are medications and stimulants to help. But without knowing the “what”, there is no solution. And a harsh reality is for SEVERAL conditions, even with a diagnosis, there may still not be anything more we can do.

My maternal instinct is to go into detective mode to solve the problem. I mean, after all, I know him better than anyone else so surely I can research more and harder, or magically Google the right combination of words until the holy grail of diagnoses appears before me on the screen. But alas, I am not a doctor… And Googling never ends well. Trust me, my husband would block the site from my phone if he could. So, I eventually find myself emailing Rowan’s specialists my latest batch of research to see if they think a certain diagnosis could be “the one.” As mentioned, I know I’m not a doctor and I know I need to just let them do their jobs… But I am a mom, and waiting endlessly without a course of action is an impossible task to execute. 

Coming back full circle, our clock for six months has now begun. We’ve been told this next test, trio whole exome sequencing, is our best bet. It will test all 20,000+ genes from Rowan, Dereck, and I. If it is a known genetic condition it will identify it. However, it only has a 40% success rate. If it is something extremely rare that has not yet been identified it will not provide answers. They recommend re-testing annually at that point for new added conditions. We’ve been told it may take YEARS to find an answer. And as daunting as that is, we just have to be patient and pray for answers in His timing. Wish me luck as I start this next bout of sleeplessness.

Ro has had two surgeries now and three sedations in his short time here on this Earth. And as much as I thought they would, they don’t get any easier… If anything, they become harder as he gets older and more aware. 

The first surgery was a pretty major one. Rowan has severe ptosis and without the surgery his brain would have cut off connection to the eye causing amblyopia, blindness in one eye. Leading up to it my husband and I went back and forth so much. We were clinging onto a false hope that it would improve on its own with patching alone. 

The night before I don’t think either of us slept. As I laid in bed, sipping a glass of wine I thought would help combat my fears, all I could do was watch our son sleep. With all of the unknowns from genetics to neurology, it makes every single “simple decision” difficult. Besides, I’m the type of person who can’t even pick a restaurant, now I have to make big medical decisions for someone else?! But, that wasn’t our top concern—we were most nervous for anesthesia, and that’s what weighed on me through the night into the early morning hours.

The surgery was successful but the day was filled with many mixed emotions—fear of the outcome, anxiousness for results, anger from his multiple pricks of failed IV attempts, anticipation and excitement to finally see him with both eyes open… But once the feeling of relief wore off, guilt started to creep in. 

Seeing him come out of anesthesia successfully is always a HUGE relief, but the heart-wrenching cry of pain that follows instantly fills me with guilt. He doesn’t understand why mama is holding him down for IVs or why he wakes up uncoordinated and in pain. And in the middle of the night, in a state of sleep deprivation, there is no reasoning with myself… All I feel is guilt for consenting to his pain and I have no better words for him than a continuous loop of “I’m Sorrys.” Thankfully time, healing, and results help us to know we are making the right decisions and the guilt slowly fades away. 

This second surgery this past week has been rough though. At 14 months he now knows he hates needles. He HATES being held down even more and he can squirm around and kick so much harder.

Rowan is now considered a “MH precaution.” Because of his level of muscle weakness and his unknown diagnosis he is considered high risk for having a life threatening reaction to anesthesia gasses as well as succinylcholine, a specific type of anesthesia so he cannot be exposed to them. This means the IV must go in beforehand while fully awake and the room must be specially prepped with all machine lines flushed. The anesthesiologist explaining this to us RIGHT BEFORE surgery was terrifying. 

I need time to process things and sometimes we don’t get that opportunity. This surgery was supposed to be fairly simple. I wasn’t supposed to cry so much this time. Well once again I was wrong in my expectations of emotions. I cried more this time. Holding my fearful baby down while lying in the little hospital bed with him was not something I was prepared to do but it was something I needed to do. 

I guess my point here is there are always things we don’t think we can handle but we just do them without question because it’s what is best for our child. I was his safe place in that moment versus a stranger in scrubs. So at the end of the day I really, really hate the emotional rollercoaster of surgeries but I’m thankful for the medical advances that make them possible. I’m thankful that he won’t remember either of these surgeries when he’s older. And I’m thankful for a husband that holds it all together when I can’t.

So what battle you ask? We still aren’t quite sure. Here’s what we know…Rowan has many “abnormalities” many “anomalies” but who wants to be normal anyway? Every week it seems our geneticist and neurologist are “conferring”…aka arguing. One thinks it’s genetic and the other thinks it’s neurological or neuromuscular. They don’t ever seem to agree with next steps or testing. Regardless, Rowan seems to amaze them all with what he figures out how to do. Our son is smart. He is strong. He is resilient. Sometimes his mind knows what to do but his body can’t quite keep up so he gets frustrated. So before you go labeling and judging kids in public when they have a meltdown, know their story first. Rowan is a very good baby but I know we have many moments ahead of us of pure frustration. I feel for you other mamas out there when I see you. You’re not alone. When it comes to size, he has never made it on a chart. When it comes to milestones we are way behind. But without both ends of the spectrum we wouldn’t even have charts or guidelines. So in our home we celebrate inches not milestones. You best believe the day he learns to walk I will bawl my eyes out! I’m learning to stop comparing. I’d love to say I’m there already because I KNOW that no two children are the same…but I’m still working on it. You see, when I get a text showing what another baby in the family learned to do so quickly I WANT to be happy. When I see someone that’s pregnant again, I want so badly to be ecstatic for them. But part of me hurts because I know my son had to work sooo hard to master that skill and I don’t know if that’s in our future. But at the same time who am I to even get frustrated when so many people I know can’t even get pregnant or they have a child literally fighting for their life right now. I am blessed but I am human so I I’ll continue to work on this part of me.

When you’re pregnant and even before, you find yourself daydreaming of how things will be. You picture yourself as a mom and your husband as a dad. You have this “image” of what your family will be like. I am nothing like how I pictured myself. I thought I’d love family gatherings. I thought I’d be fine with people loving on him and I thought that him playing in the dirt and grass would be an everyday occurrence. I was wrong. I DREAD family and social gatherings. I HATE people loving on him and do not allow kisses. And all I can think when playing outside is, “Will this grass break him out since he’s allergic to what seems like everything?, Are there chemicals on the lawn that could harm him since everything goes in his mouth?” People tell me “Just relax. He’s fine. Calm down.” The reality is I can’t just relax. Since having a baby early; having a baby with special needs (something I refused to let myself say out loud for months), I am filled with anxiety. It’s not something I can simply turn off. Some may call it PTSD. Some may say it’s a hormonal imbalance. Others may argue I’m just uptight or pushing people away. Call it whatever you want but I’m just trying to protect my son. What every mother tries their best to do. We have spent more hours than I can count inside Children’s Hospital facilities. And not because of admissions. We have six specialist and three different types of therapy. And as much as I LOVE our care team, I don’t want to spend any extra time there. I say we and our versus he and his because we are in this fight together. Our son will never fight this battle alone. We are his voice and his protectors. His advocates.