Day 23 of Guest Blogging for TSC Awareness
By guest blogger Susan McBrine
Being a mom is the hardest job any woman ever has. No one prepares you totally for the complete neediness of a baby, or the way you suddenly know for the rest of your life you will love this baby with a love you didn’t know you even knew how to give.
You are in awe of this feeling and overcome with joy every morning when you stagger sleepily into your baby’s room and see her tiny face light up when she sees you.
No one can prepare you for the absolute wave of grief that hits you, however, when a few months later, a strange doctor tells you that baby has tuberous sclerosis .
The baby you envisioned watching graduate from school, get married, become an adult… All those dreams of normalcy seem to vanish with two words spoken from a person you now want to slam your fist into and call a liar! You ask why, why? And you are angry, sad, and finally determined to fight this disease. You also know that nothing will change the love you feel and nothing will stop you from getting this child the medical help she needs to live a happy life.
As the years go by , perhaps you have other children, perhaps your marriage fails or gets stronger, perhaps your friends you thought you had fade away from your life because your every waking minute is consumed with caring for the child who now has brain tubers, seizures, too many medications to count, kidney tumors, behavior problems, autism and major developmental delay. Those friends have been replaced with, perhaps, other moms of a special needs children, who are the only ones who understand your devotion to this special child. The child, who despite driving you mad several times a week, is so endearing when she finally can say ” I love you ” and finally can interact and play with other children .
Your heart breaks for her every day and your heart celebrates every day at her slightest progress because it is a huge long-awaited accomplishment. You stay awake at night wondering how you will pay for her medication, whether you are being a good enough mom to your other children, a good enough wife, a good enough teacher, worker; and you worry, most of all, if your child with TSC will live, have a quality of life , a future. And what will happen to her if something happens to you?
What you don’t worry about is yourself. You’ve forgotten to worry or even think about yourself most of the time because there is no time for you. Doctors’ appointments, IEPS, hospitalizations, blood tests, therapy appointments, more doctors’ appointments, medical tests, MRIs, EEGs, sonograms, surgeries, psych evaluations, teacher conferences, trips to pharmacies …
It seems endless and every few years another body part or organ pops up with a TSC symptom and you grieve all over again for the healthy child you dreamed of and you cry for the suffering one you have now and love so much. The tears are always there just below the surface.. But so is the joy that she has defied the doomsday prognosis, the life expectancy. And she has taught your other children compassion, kindness and tolerance. You are so proud of them and grateful they are healthy and normal.
You thank God for every day she lives and beats TSC and you thank Him for making you strong enough to raise her. One day you realize she has made you a better person! But your marriage may not have survived the strain because he was never really committed or never really dealt with his grief. It’s too late to wonder why. The marriage is over. It ends when you understand he isn’t capable of standing by your side and never was.
Or your marriage and bond grows stronger, if you have the right man, because of this special child.
Your child is now an adult with, perhaps, a child’s mind, and you have spent your adult years in a career working with teens and children in regular and special education while raising your own and you realize you’ve still forgotten yourself.
You’ve spent many hours explaining to friends, relatives, doctors, teachers and strangers what tuberous sclerosis is and helping other mothers cope. And insisting to them that you are neither a saint nor a martyr for choosing to raise this child despite the many people who say,”I don’t know how you do it.” Sometimes they say that because they are secretly wondering if they could do it if it was their child. The answer is simple . You have no choice. Your child needs you.
One day you also realize that finding yourself will be the healthiest thing you can do. You meet and fall in love with a real man, just when you thought they didn’t exist (as I did) if your first marriage has failed. Eventually all your children, except your TSC child, leave home to successfully live their own lives. And then your worst fear comes true. TSC has won the battle. And in my case the following happened:
Your TSC child’s second kidney is failing after endless hospitalizations and medical complications, including a year with a feeding tube. Dialysis and transplant are considered, agonized over, and then your trusted pediatric neurologist and you make the decision that she would not tolerate either successfully, only prolonging her suffering. You can no longer care for her at home and work also, which you have to do, so you reluctantly, sadly, place her in a group home with a nursing facility where she is surprisingly happy and social for a time. Meanwhile, you continue to work and travel two hours one way to visit her on weekends when you can get there.
About a year later she is facing complete and total kidney failure and you are facing hospice care for the child you fought and battled for 30 years to keep alive. Now you realize you have to allow her to die and end the suffering…it seems impossible to bear the grief this time.
Even though you are finding happiness in life, your world is collapsing again because your baby, your first born special child is dying and you have to let her go after a lifetime of helping her to live. How does a mother endure this pain after you were chosen to learn all the lessons raising a special child has taught you? You lie awake at night wondering and greiving all over again and you ask why? Why?
There are no answers…but you know after burying this child that the hardest thing a woman can do ever is to be a mother and watch your child die.
Your other children continue to bring you great joy, pride and love in your life. You are so thankful you were able to experience the joy of raising other non-affected children to adulthood. Yet you will always grieve for your special child and miss her unconditional love, total innocence and uncanny sense of humor in spite of all her suffering.
Yet you have found yourself finally…. Because you realize you were meant to be her mother to become the person you now are. This was my TSC journey and one typical of so many other TSC moms who have made similar journeys. But their journey will be more hopeful and less lonely because of the Tuberous Sclerosis Alliance. I hope all the moms find themselves because I know we all forgot ourselves for a time.
Global awareness has increased today. And there WILL be a cure.