The Start of Every Journey…

Introductions

My name is Brian Cavins,

I’m 36 years old and I live in Florida with my beautiful wife Shelly, and my daughter Hannah…

That might seem like a pretty commonplace introduction, but I’ll add this caveat…I’m a special needs dad. what does that even mean? why do we say special needs? Why not disabled? why not retarded? why not handicapped? I hope through my posts, my musings, my anecdotes you will come to understand. The simplest answer is because we love our daughter, and while her abilities are apparent to us, a label like those above just doesn’t fit into our complexity of life.

To really put it into perspective let me take you back to our journey before Hannah’s birth.

in 2012 my wife Shelly and I were like any other young couple. we had good jobs, she was a teacher, and I a coffee shop manager. we enjoyed our time together, frequenting concerts, taking trips, making memories. We were that idealistic couple. well, when that got mundane, we both knew we had wanted more. from the time we got married we wanted our family. We wanted to be responsible. Both of us had finished school, we had bought a house when we were married in 2008, and had job stability. So it was natural that we started talking about having kids of our own.

We always had talked about how many, and what names would be. We joked about how we would do things differently than our parents did. I think we have all been there. One thing we talked about that many others don’t though, was a very real possibility of a congenital birth defect. my wife has lived her entire life with a severe cleft lip and palate. Shelly endured over 19 surgeries for cosmetic and health related repairs. I had been by her side for the last couple procedures and recoveries and I knew how serious this was. I remember as her boyfriend pacing the halls of the hospital, waiting for her to get out of her surgery. Her mom had to withhold my coffee the rest of that trip I was so anxious. Shelly’s biggest fear as a mom is that our child would have to endure that same hardship.

I remember one night we were lying in bed, talking about family. I told her “I am ready when you are” and she reiterated her fear of that unknown. I responded ” No matter, what we do it together. we get through it together” Little did I know how powerful and true that statement would be. shortly after that late night discussion Shelly told me we (she) were(was) pregnant. We were thrilled. I remember being cautious to tell anyone at work, we had to wait that very uncertain time in early pregnancy…God forbid anything went wrong. finally we made it past that time, and I was able to loop my boss into what was going on. I had a series of meetings I was attending and I had to skip out to a OBGYN appointment with Shelly. At that point we hadn’t made it common knowledge and my boss just made an excuse for me to leave early. the first couple months of the pregnancy went very smoothly. typical things like morning sickness, aches, and pains, tiredness everything pretty routine by the doctors assumption. then at the 20 week ultrasound that’d when we got the news that would change the course of our lives, and the lives of those around us forever.

We had gone to clinic to get a ultrasound. because of our fears of a complicated birth, and possible birth defect we wanted a full diagnostic ultrasound to make sure everything was going well. They put us in that room, and slathered on that jelly. we started watching as the technician slowly made measurements and took the pictures. it was very quiet in the room. She didn’t speak much to us through that whole time she was in there. She excused herself and told us the doctor would be in to discuss the findings with us. it seems like an eternity goes by. Shelly started to cry. she kept saying “they found something wrong” “I just know they did.” I, being the supportive husband was trying to be my bravest and most supportive saying “They are probably just making sure everything is correct, and that all the pictures are done properly, it just takes some time” My throat constricting a bit even as I said those reassuring words. asking myself “what if there is something wrong?” Well, a few moments later the doctor and nurse came back in. the nurse reached on a desk and grabbed a box of tissues and placed them near us on a table. it was a subtle move, but I would say her experience with this type of news probably told her they would be needed.

The typical pleasantry was exchanged. they asked us if we wanted to know the sex, which of course we did. “it’s a girl” the doctor said “But we have some concerns…” the doctor was preparing us. Our hearts dropped. everything we feared was becoming our reality now. he continued “your daughter seems to have an abnormally developed brain” Shelly is already in tears at this point. “indications with the large offset eyes, deformed brain, and facial clefting, is that this child may not survive to birth. the conditions that could cause this are not compatible with life” both of us are crying now. i’m holding my wife as tight as I can. this is the worst news anyone could receive about their unborn child. the Doctor continued “we know this is hard, and we have options available for you if you wish to terminate the pregnancy safely” I about came out of my seat at that point. we had just been given the news that our daughter had a more than likely fatal birth defect, but he was asking if we wanted to speed along the process? I was livid. my wife hysterical at this point. I told him we needed a few minutes to talk privately.

We were inconsolable for a good few minutes. it was quickly becoming the worst day of my life. and Shelly asked me…”what do we do?” We were both raised in Catholic families. my own mother was a staunch pro-life advocate and attended rallies and marches throughout my youth. I spent many summer afternoons playing across the street from an abortion clinic with my brothers and sisters as she held signs. As I grew older my own feelings on the subject were much more softened than hers. while I didn’t personal believe in abortion,I felt its not my right to dictate that to others. So we were faced with that very moral dilemma. “what do we do?” my wife asked through tears. I breathed slowly, trying to calm myself. “we give her the best chance possible. no matter what that means. I made you a promise that no matter what we do this together.” we embraced. we cried. the doctor knocked and came back into the room. I think he half expected that we wanted to go forward with terminating the pregnancy. he seemed utterly surprised when we declined. I think part of me was in a bit of doubt….maybe they made a mistake…its still too early she has time to develop still…maybe it was too early to get a good picture… I keep telling myself, and my wife “everything is going to be OK.”

That was the beginning of our journey. from that point will start my personal journey in special needs parenting. my life would never be the same. Through this blog, I will share our triumphs, our sorrows. I hope that you follow along and laugh, cry, learn, and maybe grow closer to your family through our story. a Dear friend of mine “Fr. K ” told me after we received some wonderful support from our church and friends. “It is not you who needs to be thankful, you do not ask for any of this. It is we who should thank you for sharing the Miracle that is Hannah in your 24/7/365. you two are simply amazing parents”

So I am here to share. everything from changing diapers and tracheostomies, to celebrating our little victories, to self-care for the caregivers. I hope you find this enlightening and follow our story as we continue our Journey of HoPE.

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