Well Mom and Dad, if you are reading this letter by now your child has been diagnosed with a Leukodystrophy. Let me begin by saying CONGRATULATIONS ON THE NEW BABY!!! In looking back, the thing that stands out in my mind after receiving this same rare diagnosis for my son Morgan was how awful it was to have people say “I’m sorry” . Uh, I HAVE A NEW BABY, PEOPLE!!
This is a time to celebrate a new life, a new member of the family, and to rejoice in being parents! This is a time to enjoy every coo, every smile, every moment. What this isn't is a time to be sad, to treat your child as if he/she is dying. What this isn't is a time for family and friends to pity you, avoid you, not know what to say to you. A new baby is a miracle, and yes you had hopes and dreams for this child to be normal, have a normal childhood, enjoy all the normal things that normal children do - but now your family simply needs to find a new normal! To learn to live each day to its fullest, not mourn for what will never be. My life literally changed when a very wise Mom advised me to “stop mourning your child while he is on this earth, I promise you there will be plenty of time for mourning later”. The BEST advice I have ever received!
From that day forward we had our new normal - whatever made Morgan smile we did over and over and over and over again, wanting his laughter to go on forever, we just kept banging that cabinet door! When he started cooing, we jumped in with a narrative of what he was saying. When Morgan started laughing for no reason, we all stopped whatever we were doing on a dime and joined in. Anyone looking in from the outside must think we were the biggest group of weirdos ever, but actually our attitude was contagious and our family and friends began to follow our example and stopped feeling sorry for him, pitying us - in fact, we opened their eyes to a new way of living life!
I had the misfortune of having a well-educated doctor at the top of his feld tell me that I would NEVER see my son’s 4th birthday. That I shouldn’t take him to physical therapy because what was the point, really? I am here to tell you that the information that your doctor has shared with you about the course of this disease, the prognosis, all the bad stuff in your child’s limited future is based on medical research that is oftentimes decades old and no longer 100% accurate. You are fortunate to have the world wide web at your disposal, and I promise you that you will find more information about this disease than you want to even think about right now on the internet. Some more accurate than the rest, so be careful what you choose to rely on! The one thing that will make a huge difference in your life will be finding another parent that has walked this path before you that can guide you with their wisdom of frst-hand experience. No two children with Leukodystrophy are the same, and no two will have the same course or outcome. The important thing to remember is that you are your child’s best advocate, and if you buy into the “I’m sorry it’s a death sentence” it will be a self-fulflling prophesy!! Talk to other parents, get 2nd and 3rd opinions from professionals, educate yourself on the disease, join a support group, and always always always trust your gut because Mom really and truly does know best!
In conclusion, my son Morgan will soon be 18 years old! Yes, the same child that would “never” see his 4th birthday! I credit that to fnding another parent that had “already been there, done that”. I will leave you with two thoughts - CONGRATULATIONS ON THE NEW BABY! And live every day as if your child will live forever, because after all no one ever guaranteed any of us that. :)
Kristen
This is a time to celebrate a new life, a new member of the family, and to rejoice in being parents! This is a time to enjoy every coo, every smile, every moment. What this isn't is a time to be sad, to treat your child as if he/she is dying. What this isn't is a time for family and friends to pity you, avoid you, not know what to say to you. A new baby is a miracle, and yes you had hopes and dreams for this child to be normal, have a normal childhood, enjoy all the normal things that normal children do - but now your family simply needs to find a new normal! To learn to live each day to its fullest, not mourn for what will never be. My life literally changed when a very wise Mom advised me to “stop mourning your child while he is on this earth, I promise you there will be plenty of time for mourning later”. The BEST advice I have ever received!
From that day forward we had our new normal - whatever made Morgan smile we did over and over and over and over again, wanting his laughter to go on forever, we just kept banging that cabinet door! When he started cooing, we jumped in with a narrative of what he was saying. When Morgan started laughing for no reason, we all stopped whatever we were doing on a dime and joined in. Anyone looking in from the outside must think we were the biggest group of weirdos ever, but actually our attitude was contagious and our family and friends began to follow our example and stopped feeling sorry for him, pitying us - in fact, we opened their eyes to a new way of living life!
I had the misfortune of having a well-educated doctor at the top of his feld tell me that I would NEVER see my son’s 4th birthday. That I shouldn’t take him to physical therapy because what was the point, really? I am here to tell you that the information that your doctor has shared with you about the course of this disease, the prognosis, all the bad stuff in your child’s limited future is based on medical research that is oftentimes decades old and no longer 100% accurate. You are fortunate to have the world wide web at your disposal, and I promise you that you will find more information about this disease than you want to even think about right now on the internet. Some more accurate than the rest, so be careful what you choose to rely on! The one thing that will make a huge difference in your life will be finding another parent that has walked this path before you that can guide you with their wisdom of frst-hand experience. No two children with Leukodystrophy are the same, and no two will have the same course or outcome. The important thing to remember is that you are your child’s best advocate, and if you buy into the “I’m sorry it’s a death sentence” it will be a self-fulflling prophesy!! Talk to other parents, get 2nd and 3rd opinions from professionals, educate yourself on the disease, join a support group, and always always always trust your gut because Mom really and truly does know best!
In conclusion, my son Morgan will soon be 18 years old! Yes, the same child that would “never” see his 4th birthday! I credit that to fnding another parent that had “already been there, done that”. I will leave you with two thoughts - CONGRATULATIONS ON THE NEW BABY! And live every day as if your child will live forever, because after all no one ever guaranteed any of us that. :)
Kristen
