Our Village

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.