Barth Syndrome

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Barth Syndrome
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    What's New in Barth Syndrome
    Kristi Pena

    Letter 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 The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

    Kristi Pena

    To the Impatient Woman Standing Behind My Child With Special Needs and Me

    I used to be like you. I used to be impatient. I used to be in a hurry. But the little boy I was in line for changed all of that for me. When you impatiently moved into our personal space to let your hurried presence be felt, please know we sure felt it. When you realized we were there to handle a large order, you said loudly, “I sure picked the wrong line,” as you walked away. You gave me the nastiest look you could possibly muster. I felt myself get defensive as the tears stung the back of my eyes and threatened to appear. I had to remind myself I used to be just like you. (And remind myself I was slightly more emotional today due to the prolonged worry over my baby.) I realized you couldn’t possibly know these things about my son and me. You couldn’t possibly know just last week we celebrated his miracle anniversary, the date he was discharged from hospice care. You couldn’t know waiting is my job now. You couldn’t know that just today alone I spent a lot of time texting, emailing and speaking to multiple people on his care team to coordinate his extensive needs. You couldn’t know we went to multiple specialist appointments, including palliative care. Palliative care doesn’t mean end-of-life care like some may think, but it does mean he has a lifelong, incurable and complex condition. You also couldn’t know one of the reasons it took us longer is because I needed pharmaceutical counseling for yet another new medicine, making it a grand total of 32 doses of medicine every day. You couldn’t know his entire family had to learn CPR hoping we never need to use it for him, or that we go everywhere with a defibrillator for preventative measures. How could you know we’re regulars at the local children’s hospital? That most faces we see in the hospital’s hallways are as familiar to us as your neighbors are to you? You couldn’t possibly know that. I’m grateful our pharmacy team gives us all the time we need to make sure he gets the best care possible. They play a large role in our lives and do a wonderful job. But I do realize filling his pharmaceutical needs can be time-consuming. I’m sure you can’t imagine what it takes to accurately draw up 32 doses worth of medicine each day. U ntil he came into my life, I know I couldn’t possibly fathom this. I’m really not upset with you, dear lady. While I hope tragedy never impacts your life, I do hope someone inspires you to change the way someone changed me. I used to live in the fast-paced world, b ut this little boy of mine forced me to slow down. Things take time. Waiting rooms and doctors take time. Nail-biting test results take time. Getting medicine filled and ordered takes time. Waiting on him to reach milestones his peers reached a long time ago takes extra time. You couldn’t know how lucky we feel that he’s even alive. You don’t how lucky we feel to even know the name of our son’s disorder: Barth syndrome. How could you know just by looking at him that he still struggles to run and jump? Or by listening to him that he couldn’t talk before he was 4 years old? You could never  know doing things people take for granted, like enjoying the snow, caused him to have a stroke, and we had to wait some more. We had to wait for him to regain skills that took him so long to reach already. Walking, talking…doing things we take so much for granted took a lot of time for him to achieve (all over again). His heart may need to be treated with care, but it’s so full of might. You just could never know because he won’t let his challenges stop him. He may be slow, but he never stops. One thing is for certain — I don’t mind the waiting anymore. It’s what I do. Things I used to regard as the “little things” are the most important and precious things in life to me now. I believe he and God has shown me strength, courage and patience I never thought I had. And you know what? He is so worth it. I’m so excited to see what his future holds. I will take all the time he needs. Follow this journey on Facebook at Crusade4Christopher.