JMB is the mother of two beautiful daughters, ages 11 and 7, and wife to "B" for 15 years. Their younger daughter Sophie was diagnosed with Prader-Willi Syndrome, a rare genetic syndrome, at 6 weeks old. JMB has been blogging since 2009. If you enjoy her story of faith, please stop by "Say What You Need to Say" and thank her!
Just over seven years ago, my younger daughter was born. She arrived fully equipped with ten fingers, ten toes, beautiful skin, and her very own, rare, challenging genetic syndrome: Prader-Willi Syndrome. In the few seconds it took for her to arrive in this world, I went from being whoever I was back then, to being a special-needs parent. Although I have no idea how much of the journey lies ahead, or how much further it will impact my faith, I do know that in that moment...everything changed, including my faith life.
When I look back and try to remember the details of the first year of her life, they are a blur of doctor's appointments, therapy appointments, feeding frustrations, fear, shock, a bit of grieving....and then, when she finally, finally seemed to turn a corner/eat better/smile, then came better times. As we very gradually got a grip on things (an ongoing and never-finished process), we also began to slowly adjust to our new title, "special-needs parents".
I do not recall, in the first months of fear and crying and adjustment, ever getting angry at God. I do not recall many moments of the "why us" variety - because, while I am curious about why this is part of God's plan for us, for our family, and for our daughter, it is in more of an intellectual way than anything else.
It is perfectly natural for special-needs parents to ask angry "why?" questions. In my opinion, getting "angry with God" when a child is born with a disease or medical issue or syndrome is just part of the grieving process the child's parents go through. They grieve for the life they thought they would have with the child - all the activities they thought they would do, all the "normal" family stuff - the vacations, the birthday parties, the day-to-day life as a family. All those things look different, when a child with special needs is born. So it would not have been surprising had either I or my husband decided to rail at God, for Sophie having been born with this complex and frustrating syndrome.
But I didn't. I'm just not prone to that. Furthermore, in those first months I was far too busy and exhausted to spend a lot of time being angry. I had my moments, certainly, of crying and being heart-broken, of repeatedly saying to my husband "this wasn't how it was supposed to be". Of course I have wondered why Sophie was chosen to carry the challenges of PWS with her all her life (there is no "cure" for PWS). Of course I have wondered why God chose to send her to us.
Just over seven years ago, my younger daughter was born. She arrived fully equipped with ten fingers, ten toes, beautiful skin, and her very own, rare, challenging genetic syndrome: Prader-Willi Syndrome. In the few seconds it took for her to arrive in this world, I went from being whoever I was back then, to being a special-needs parent. Although I have no idea how much of the journey lies ahead, or how much further it will impact my faith, I do know that in that moment...everything changed, including my faith life.
When I look back and try to remember the details of the first year of her life, they are a blur of doctor's appointments, therapy appointments, feeding frustrations, fear, shock, a bit of grieving....and then, when she finally, finally seemed to turn a corner/eat better/smile, then came better times. As we very gradually got a grip on things (an ongoing and never-finished process), we also began to slowly adjust to our new title, "special-needs parents".
I do not recall, in the first months of fear and crying and adjustment, ever getting angry at God. I do not recall many moments of the "why us" variety - because, while I am curious about why this is part of God's plan for us, for our family, and for our daughter, it is in more of an intellectual way than anything else.
It is perfectly natural for special-needs parents to ask angry "why?" questions. In my opinion, getting "angry with God" when a child is born with a disease or medical issue or syndrome is just part of the grieving process the child's parents go through. They grieve for the life they thought they would have with the child - all the activities they thought they would do, all the "normal" family stuff - the vacations, the birthday parties, the day-to-day life as a family. All those things look different, when a child with special needs is born. So it would not have been surprising had either I or my husband decided to rail at God, for Sophie having been born with this complex and frustrating syndrome.
But I didn't. I'm just not prone to that. Furthermore, in those first months I was far too busy and exhausted to spend a lot of time being angry. I had my moments, certainly, of crying and being heart-broken, of repeatedly saying to my husband "this wasn't how it was supposed to be". Of course I have wondered why Sophie was chosen to carry the challenges of PWS with her all her life (there is no "cure" for PWS). Of course I have wondered why God chose to send her to us.
Perhaps the answer is this: God chose Sophie to be a blessing. Pure and simple, a blessing. Sophie is in no way a "mistake" - she was created exactly as God wished her to be, faulty 15th chromosome included. I don't need to fix her - she's not broken. She's perfect just as she is. She has brought so many moments of unadulterated joy to our lives: learning how to talk when that is such a difficult skill for children with PWS to master, learning how to walk unassisted, and learning how to read... for children with PWS and their parents, none of these achievements can be taken for granted - they are a huge celebration, every time.
The "fire" that is this syndrome, is most assuredly being used to refine my soul. Many days I know I am found wanting - the days when the behavioral issues of PWS are just too much...when Sophie's hyperphagia (consistent feeling of starving along with a consequent obsession with food) is driving both her and me crazy...when her behavioral quirks are proving unbearable to her older sister. But the lesson I am learning, through all of this, is that God doesn't make mistakes, and that as challenging as living with PWS is for our little family, good things have and will continue to come from this journey.
Being a special-needs parent....you know what it demands of me, every single day? It demands that I look consistently to God, to ask for grace and patience, kindness and compassion. It demands that I lean on Him consistently, and especially when I have nothing left, emotionally and mentally. It requires that I consistently forgive those in Sophie's life, both now and in the future, who may not be very kind to her - children and adults alike. This particular parenting job with my Sophie asks very specifically for love that is unconditional, that is firm in protection, that is consistent in forgiveness. Much as I might wish she could control her constant hunger or her behaviors, she just can't. As frustrating as that might be for her and for us, the bottom line through all of this is that we - and everyone around her - love her for exactly who she is. When she has a meltdown and becomes hostile, as frustrating as that is, we must forgive her - because it is the syndrome talking, and not her. I also have to forgive myself at times, for the very human feelings I often have in response to the demands this syndrome places on me, as Sophie's primary caregiver. I have to draw on a supply of understanding I don't often feel, in order to be patient with both Sophie and her sister. I don't know where else that supply can come from, except from God, who is right there in the room with me. That knowledge helps, because it is so very easy to feel alone in this journey.
Thanks for reading!
The "fire" that is this syndrome, is most assuredly being used to refine my soul. Many days I know I am found wanting - the days when the behavioral issues of PWS are just too much...when Sophie's hyperphagia (consistent feeling of starving along with a consequent obsession with food) is driving both her and me crazy...when her behavioral quirks are proving unbearable to her older sister. But the lesson I am learning, through all of this, is that God doesn't make mistakes, and that as challenging as living with PWS is for our little family, good things have and will continue to come from this journey.
Being a special-needs parent....you know what it demands of me, every single day? It demands that I look consistently to God, to ask for grace and patience, kindness and compassion. It demands that I lean on Him consistently, and especially when I have nothing left, emotionally and mentally. It requires that I consistently forgive those in Sophie's life, both now and in the future, who may not be very kind to her - children and adults alike. This particular parenting job with my Sophie asks very specifically for love that is unconditional, that is firm in protection, that is consistent in forgiveness. Much as I might wish she could control her constant hunger or her behaviors, she just can't. As frustrating as that might be for her and for us, the bottom line through all of this is that we - and everyone around her - love her for exactly who she is. When she has a meltdown and becomes hostile, as frustrating as that is, we must forgive her - because it is the syndrome talking, and not her. I also have to forgive myself at times, for the very human feelings I often have in response to the demands this syndrome places on me, as Sophie's primary caregiver. I have to draw on a supply of understanding I don't often feel, in order to be patient with both Sophie and her sister. I don't know where else that supply can come from, except from God, who is right there in the room with me. That knowledge helps, because it is so very easy to feel alone in this journey.
Thanks for reading!
Later,
Jen
Jen
Good morning! I'm visiting from SITS! I always love to read inspirational stories and accounts of what God can do! Thanks so much for sharing...I'm now a follower!
ReplyDeleteGreat post Jen! Great series idea as well! I love the header for this blog too.
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