Diagnosis: Trisomic disorder
By Grandma Lu
I am the mom of a daughter and son-in-law who made a heartbreaking choice, and the grandma of a baby angel in heaven.
It has been barely six months since the loss of my first grandchild, a precious granddaughter who is now a tiny little angel living with God and all the other angel babies. I would readily accept all the pain my daughter and son-in-law endure – gladly soak it into my soul – if it meant that my sweet and brave girl and my wonderful son-in-law could feel some semblance of peace in their hearts. Oh, how brave they have been.
I had only known about my grandbaby’s existence and impending arrival for about two months before I was told that she would very shortly be gone. My daughter and son-in-law live quite far away and therefore were able to keep their exciting news a secret from everyone at home until they came for Christmas – their gift to us. I quickly went into celebration mode. What followed were several blessed and blissful weeks of sharing the news with everyone who would listen to me, hour after hour of dreaming about the baby to come and countless trips through the baby section in every store in town!
Then the sky fell in. They had gone back home after Christmas to learn, over the next few weeks, the most devastating news expectant parents can hear.
After a first detection that something may be wrong, they went through weeks of tests, living in a state of agony and fear, hanging on to every thread of hope. Finally they were told the worst they could have imagined. Their baby, a girl, was very sick. She had a trisomic disorder and many things were wrong. With a final diagnosis and doing all the research they possibly could, they made the devastating and heartbreaking decision to let her go. They would suffer so that she would not have to. The worst of this for me was the knowledge that they endured this entire time completely alone. I realize and understand that it could be no other way. Others cannot make these decisions, nor should other feelings and opinions be a part of a decision that only the two of them should make, in private, with their doctors.
I remember waiting for the call that would tell me when they would be going to the hospital. I remember waiting for close to 30 hours for that final call from them at the hospital, telling me that the delivery was successful, that she had been held and cuddled and baptized, and that she was gone. I remember going to the cemetery for them a few days later in a state of numbness to ask about buying a plot for a baby. I remember barely making it home in time to throw up. How could this have happened to my child?
If any of this seems familiar to you, then you know what life has been like since your child walked down that path of no return, into a dark state of grief and despair. I work hard to get through every day and can hardly stand the knowledge that their days and nights are so much harder than mine. All my energy these days is absorbed into maintaining a reasonable level of normalcy, hiding alone in my grief, praying for help and strength, praying for the gift of a healthy baby for them.
But first of all, I am praying for their health and well-being. I now have a daughter who, as a young woman, isn’t experiencing her child-bearing years as she deserves, and never will. She isn’t the same. Her eyes aren’t the same. She appears to have lost her sparkle, and oh boy, did she ever used to sparkle. My son-in-law is brave, and calm and supportive, but his pain is clear to me. From now on, pregnancy will be lacking that wonderful carefree joyous sense of anticipation for the two of them. Any pregnancy will be overshadowed by fear, with more medical tests than any of us grandmothers could ever have imagined.
So now the only question that remains is, what do we do for our children? What can we do? Nothing we do or say seems to be enough or the right thing. We can’t change what happened, nor can we take away the pain of their loss.
After much soul searching, I find myself with these thoughts and reminders …
Try not to focus on what I can’t do. Instead, concentrate on what I can do. Even when we ourselves have days when we can barely hold our own heads up for the weight of the worry, we must inspire hope, prayer, strength, faith and determination. Continually encourage them, individually and as a committed couple, to push on and never lose hope. Help them find the tools and resources that we, in our day, would not have had. Encourage them to get appropriate medical referrals and professional counselling. Help them find books to read and share. Remind them to get their rest, eat healthfully, live their days with purpose, spend quiet times together, and be patient, kind and gentle with each other. As grandparents, I believe that we must honour them by always honouring the memory of their baby, and tell them to hold their heads up with dignity because they have displayed the ultimate in courage and selflessness. And most importantly, make sure they know how much they are loved.
We are a generation ahead of them, older and supposedly wiser, therefore we know that loss happens. It happens to everyone at some point, we just don’t know who we will lose, when or why or how it will happen. As parents of grown children who are making their own way in this life, we know there is no way to alleviate the helplessness they feel, there is no way we can erase their pain or ‘inject’ strength into their souls, and there is no way to convince them to believe that all is not lost. They will learn just as we have, and still are.
On their own journey.