Preparing to Welcome Baby into Our World...

When embarking upon a new phase of life’s journey, supportive and reassuring peace often comes from knowing that others are walking alongside and sharing in the journey.

For the past seven and a half months, Megan and I have been on a beautiful and rewarding journey that has found us preparing our home – and more importantly, our lives! – for parenthood. We’re so incredibly grateful for the many ways we have already felt support and love in this transitional time, and we’re excited to be able to introduce our new little one to the world in about seven weeks. What a blessing it is for us to have the reassurance of the countless ways they (and I'm using the singular, non-gendered "they" here... no, we're not having twins) will be surrounded by the love of family, of friends, and of a faithful congregation as they claim their place as a beloved child of God, made in God’s image.
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As you continue to walk with us on this journey, we want to give you some important updates about the sweet baby we’re preparing to welcome into the world.

Thanks to the wonders of today’s medical technologies, we know that the journey we’re on continues to be on track. Megan has had a healthy pregnancy, and baby continues to grow healthy and strong. We also know that our baby will be born with a cleft lip and cleft palate.

I, too, was born with a cleft lip and cleft palate, as a result of a relatively rare condition called Van der Woude syndrome (VWS) – a genetic mutation bearing unique physical traits of the face and limbs. If this is news to you, that’s okay! I only recently discovered the genetic details of my story myself. (You can learn more about VWS and cleft lip and palate here).
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VWS is a significant genetic cause for facial deformities including cleft lip and cleft palate, as well as the “webbing” of fingers, toes, and limbs (Have you ever wondered why I wear my wedding band on my right hand? Ask to see the super-cool ‘web’ on my left hand. I’ll show you. As long as you resist the temptation to ask if it enables me to swim better. It doesn’t. I promise.)

​I was, by all accounts, a happy and healthy baby, albeit a baby who would require several surgeries for facial reconstruction.  And this is just what we expect for our baby.

Obviously, I don’t remember the earliest days too well, nor do I recall the details of my first surgeries. But, I do have distinct memories of all of the later procedures. I have vivid memories of praying to God that I’d wake up the next morning miraculously looking “normal” (I’ve alluded to this part of my story in a previous blog post). And I won’t soon forget the immense feeling of satisfaction, excitement, and relief upon the successful completion of the final surgery at age 19.

Me, the night before my first surgery.

My journey with Van der Woude Syndrome was long, sometimes physically and emotionally painful, and something that has made an indelible mark on my sense of identity and self-worth. It’s a journey that has brought me to a fuller understanding of what it means to be made in God’s image, a theological claim we know for sure will be instilled in our little one. And this is a journey I will now share with our baby as they enter the world faced with similar procedures and a life that will be unavoidably marked with some level of ‘difference.’

With the realization of cleft palate and lip for our baby, we can anticipate some challenges ahead:

• Our sweet baby will look a bit ‘different’ from what one might expect to encounter when meeting a newborn for the first time.
• When baby is born, we might need some extra time to work with specialists to make sure their cleft lip and palate aren’t keeping them from getting the nutrients they need to grow.
• As baby approaches three months old, they will face their first surgery to repair their lip, followed later by others to address their palate, jaw structure, etc.
• In all likelihood, as baby grows we’ll be filling our calendars with visits to specialists to support us with things such as feeding, dental/orthodontic care, and speech therapy.

As you walk alongside us on this journey, Megan and I welcome questions and conversations. We know you might not always know what to say – that’s okay! Things like “special parents for a special baby,” “God doesn’t give you more than you can handle” or “at least it’s not…” might come to mind, but we’d be more comfortable hearing other words of encouragement, like “we’re here to support you” or “I'm excited to get to know the baby.” Instead of “I’m sorry to hear this news,” consider something such as “thanks for sharing this part of the baby’s story with me.”

When children meet the baby for the first time, they might be hesitant or anxious – it’s okay! Before they meet baby, consider sharing with them that baby is going to look a little different (you can even show them my baby photo). Assure your children that baby is okay and it doesn’t hurt. This can help them to know what to expect.

We know that many of you will want to know how you can help – we’re grateful! For now, continuing to show us your love and kindness is exactly what we need. As we learn more about caring for the baby upon their arrival, and as we enter the uncharted waters of surgeries, we’ll be sure to speak up when there are things we need.
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As Megan and I continue on this exciting new journey – and as baby begins an exciting journey of their own! – we give thanks to God that you are walking with us.

Baby TJ