To My Husband, the Father of Our Child With Barth Syndrome

Almost eight years ago, I had no idea what we were about to get into with our son Christopher’s journey with Barth syndrome.

Both my husband and I had our own dreams and anticipations for our son we were about to receive in our arms. When Christopher arrived, those dreams were shattered, and the usual first moments spent bonding together were through an incubator and lots of tubes and lines. From the beginning, we were told to brace ourselves to imagine the unimaginable. We’ve made the hardest decisions anyone could ever face and even planned our newborn son’s funeral. We chose to let go if that were God’s will. We grieved over the dreams we had for our child. We watched helplessly as our oldest child, Justin, lost all security in his previously sheltered life.

Well, I believe our mighty God had other plans for our little family. I believe He wanted to show the world the miracles He still performs on a daily basis. Slowly but surely, our miracle Christopher made milestone after milestone. Justin slowly regained his confidence and security, and this experience has turned him into one of the most compassionate young men I know.

Our dreams and prayers were answered: Christopher has been with us far longer than we dared to imagine. He has accomplished some incredibly special milestones. (Being uncertain we would see them made those moments so much sweeter for us.) Even though we deal with some extreme circumstances at times, we somehow found a new “normal.” I found comfort and a new purpose from spreading awareness and our miracle story. Though being in the spotlight can be uncomfortable for me, “being in the public eye” and meeting many strangers has become necessary to fulfill my new dreams and missions in life. Just like when we lost our baby just before Christopher, my way to heal and continue living in the world is to talk about it. Finding others who truly “get it” and sharing our experiences. Giving one another support.

In this way I think a lot of men and women are different from one another. Or at least that’s true for my husband and me.

My husband has been beside me every step of the way through this journey. He has faced his biggest fears. He has made heart-wrenching decisions that I hope you are never in the position to have to make. We have been a team throughout this journey. We do cope differently. I know he and others get tired of hearing about it. My husband is more private and does not find solace from being in the spotlight, though he is willing to tell anyone who asks that God deserves all glory.

Sometimes seeing what others go through is just too much for him. It makes him relive our own experiences over and over, struggling with peace over the trials and fears we still face on a daily basis. He has had to be so strong. He has already lost and still faces losing his children. I think because he is more quiet about this, sometimes he doesn’t get the support he needs. He just isn’t going to talk about it, with me or anyone else. I think it is hard for a man even more than a woman sometimes because they feel like it is their job to fix problems with their families. And with the problems we face(d), they are obviously beyond his ability to fix. He struggles every day coping with everything. He use the same outlet that I do by networking.

I guess the point to all of this is, I want to recognize my silent pillar, my rock through the hardest times, my husband. Thank you isn’t a good enough word, Chris, for sticking in there, even when it gets hard. Thank you for being supportive of my ways of coping with our journey. I pray I am the best wife and partner I can be and all you deserve. I want to support you through every hurt, fear and dream. I love you with all of my heart.

Thank you for choosing (and keeping) me as your life partner,

Kristiana

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