Dear Self in the beginning of this journey,
Your world is crashing in on you. Champion is in the hospital recovering from open heart surgery and you just received the devastating news that he is missing a piece of his 17th chromosome and as a result it is predicted that he will never walk, talk, eat on his own, roll over or develop beyond that of a three month old.
You are stuck in a hospital with doctors, residents, and nurses coming in and out of the room at all times as you try to get a grip on yourself. You are trying to process this rock your world, shake the foundation of your faith, cut you to the core news that you just received while making important critical decisions about the care of Champion.
You cling to hope, but your heart is breaking. If feels like it is shattering to pieces inside of you and it feels like you can feel each piece cutting you deeper and deeper the more the gravity of the situation sinks in. While you are in the hospital room with Champion there is little time to think, to fully process and so you don’t. You are in action mode, advocating for him, trying to navigate the lingo of doctors as various procedures are recommended, some you refuse, some you accept. Your feelings at this time are on the back burner.
Finally Champion is released from the hospital and you bring him home, the same child you took to the hospital, the same child you carried in you for nine months, but to you it feels like he is a stranger. It feels as though your role as his mother has been stripped away from you, replaced by the opinions and recommendations of medical professionals to decide what is best for him.
You grieve the loss of the child you thought you had and wonder if you have what it takes to care for the child you have. You feel defeated and heartbroken.
Champion sleeps in the bed next to you. At night you wake up to look at him and all you see are the features of his syndrome. The same facial features you loved analyzing and pointing out which family members he resembled now taunt you. You no longer look at him and see those resemblances, his facial features have now become characteristics of his diagnosis, reminding you every time you look at him of the missing chromosome piece and all that you have been told he will not be able to do as a result. Well meaning comments about how cute his upturned nose is cause tears to stream down your face, knowing that upturned nose is not the result of some glorious uniting of genes, but the result of a genetic mishap.
You keep his diagnosis to yourself. You tell family members but ask them not to mention it to you and let them know you don’t want to talk about it. You don’t share with friends and every time someone asks you what new milestone Champion is doing these days you suffer inside as you struggle to avoid the question.
You isolate yourself and throw yourself into the task of getting as many services in place as you can to make sure he gets as much early intervention as possible. Every idle moment your thinking turns to Champion and the life predicted for him and you honestly don’t know if you have it in you to be his mom.
You go against the natural mothering instinct in you and you have thoughts of how long they predicted he would live and you feel relief as you think how the timeline predicted is so short. You feel so ashamed for this thought and so you keep it to yourself and it eats away at you.
You go about your days caring for Champion, taking him to therapy appointments, working with him at home. You have many sleepless nights. You are so angry. You have such intense anger and you are quick to lash out at those who love you. Especially your husband, who is grieving himself and is really your greatest ally, but you often push him away, forgetting you are on the same team and that you need each other. Your faith in God is wavering. You feel like you have nowhere to turn and depression begins to settle in.
Wow, those beginning days were hard. They really took a toll on you. I am still, three years later experiencing some of the effects of those early days. I really wish I would have been able to reach you then, to tell you how things would be now, to give you hope.
If I could’ve talked to you then this is what I would have told you.
I would tell you that you would begin to see Champion as Champion and not as Miller Dieker Syndrome. Days and then weeks would go by without the diagnosis being at the forefront of your mind. You would begin to enjoy being his mom. Somewhere along the way you would fall deeply in love with your son. You would give yourself permission to love him fully, without the fear of the future, without the fear of losing him, without the fear of that you are not capable of being the mother he needs.
I would tell you that you would gain so much strength for this journey and even though you think you can’t handle it and you don’t have it in you, you will rise to the occasion and soar.
I would tell you that your capacity to cope and care would expand greatly. You will begin to see the world differently, in an enriching, fulfilling, beautiful way.
I would tell you that you would begin to see Champion reaching milestones it was predicted he never would. It would happen in his own way and his own time, but you would see it and the joy of watching him progress would take the place of the grief that once overwhelmed you.
I would tell you that you would meet some amazing, compassionate, caring professionals who take an interest in Champion and help you to help him. Champion would affect their hearts as well and you would take pride in your son’s ability to bring joy to others.
I would tell you that you find peace that surpasses your understanding. That your faith in God is renewed at a deeper level than you imagined. You will learn first hand that God does not lie when He says He is near to those who are brokenhearted. You will feel His presence as you experience some of your darkest moments. You will experience His love in a way that is difficult to put into words.
I would tell you that you have a front row seat to watching a miracle take place. And that life is not the dismal one you thought it would be. It is really very beautiful… difficult… but still beautiful.
I would tell you that yes, you will still struggle. You will still have moments of sadness, moments where you grieve, but the moments of joy will be in more abundance than those sad moments. You will find that you are happy with where you are at.
I know that you will still continue to grow in this journey but I believe that you are in a good place. Three years ago I didn’t think things would ever get better but they have. You have grown and matured in ways I don’t think you would be able to.
Although you are in a good place there are so many things that I wish you would have done differently, to help you ease the pain you were going through.
I wish you would have asked for more help, that you would have accepted more people’s offer to help.
I wish you would have opened up and shared more with those who love you what was going on.
I wish you would have been honest with your feelings and recognized the grieving process you were going through and not condemned and blamed yourself.
I wish you would have journaled through the pain rather than suffering silently in shame of your thoughts and feelings.
I wish you would have taken better care of your own health.
I wish you would have reached out sooner to other moms of children with special needs. It took you six months and when you finally talked to a mom who had been there, done it and was still doing it, it was such a comfort for you.
I wish you would have clung to God, your husband, and realized earlier what an amazing gift you have been given in your son. But I am glad you know and do these things now.
I am proud of who we have become. I look forward to what the coming years hold and I know that as long as we keep love, faith, and hope at the forefront of our hearts… all will be okay.
Love,
Self three years into the journey.
