There are so many uncertainties involved in this thing called Trisomy 18 but one thing that is for certain is that each child's story is unique. There is a kind of "kinship" felt, however, by those that have been touched by this disorder and those who grieve. When Trisomy 18 entered our lives we had to first get past the shock and disbelief but then we felt lost in a series of doctor's visits and a maze of decision-making. We share with you some things we found helpful in our journey. Some of them we gained from other parents of Trisomy 18 children and others are things we learned as we went. You don't have to walk through this alone. Find a good support group--family, friends. A wonderful resource is Trisomy 18 Support. There you can find the latest information and resources on Trisomy 18 as well as connect with others that have been and are going through similar things. You will need support before and after the arrival of your child no matter what.
Receiving the Diagnosis:
Allow yourself to grieve. You have lost more than you can even begin to grasp at this point. One
mother told us that the day she received the diagnosis was the hardest. We would agree, but in all
honesty, it doesn't necessarily get easier. Nothing about Trisomy 18 is easy.
As you begin decision-making do what is in the best interests of your family--not the doctors, your
extended family, friends or anyone else.
Preparing for your child's arrival:
The end of each child's story is always so uncertain. Will they pass away before delivery? Will they
live? How long? ---The questions go on and on. We were advised by our doctor to make final
arrangements for our son as soon as possible. We were horrified by the thought of that but after
having time to think about it and muster the strength, we did make arrangements for Zach shortly
after his diagnosis. The doctor's reasoning was that we didn't need to have to make those
arrangements after he came. We were so glad that we had done everything ahead of time. We
were deeply grieving his loss after his arrival and we found that, as terrible as it sounds, people will
take advantage of grieving parents. As we searched for a casket , a funeral home and a cemetary
for him to be buried, we had funeral homes trying to charge us up to $1500 and we were only
planning a graveside service! As it ended up, a funeral home donated their services, and the
cemetary gave Zachary a plot in their "Babyland"--the only thing we paid for was his casket. If we
would have had to make arrangements after he had come, our decisions would not have been made
in the best frame of mind under the circumstances. Again I say, nothing is easy about this whole
process but this could make things a little easier.
We tried to involve Zachary's brother as much as we could. The tendency at first was not to talk about
"the baby" because it was so painful for us. But as parents we realized that Noah was being effected
by this as well and he was grasping for answers in his own little way. Though he was only 2 at the
time, he had questions. We did our best to answer him honestly and in a way he could understand.
Have a birthplan in place. This is a detailed plan of your wishes for how you would like to handle your
child's arrival.
Your Child's Arrival:
For taking pictures, take some black and white shots. Because T-18 babies are born with many health
issues, their color is not always the best and the black and white film downplays that. Our best
pictures of Zachary are in black and white.
Take pictures and get momentos (hand and footprints, lock of hair) even if you may think you don't want them. You can always throw them away later but those precious moments can never be gotten again.
Dealing With Your Grief:
Grieving the loss of a child is truly a process. It is filled with highs and lows. There is a country song
that says "I breath in, I breath out. I put one foot in front of the other and take one day at a time."
At first we struggled to get through each moment. But taking one day at a time is the only way to
get through it.
As you are ready and as opportunities arise, share your child's story with others. There truly is healing
found in facing loss instead of ignoring it.
Other grieving parents told us that 6 months after losing a child can be extremely difficult. We found this to be true. We thought we were doing so well and then it really hit us hard. I think at 6 months,
others begin "forgetting" about your loss and that can be very painful.
YOU KNOW YOU'RE GETTING BETTER WHEN...
Your memories make you smile instead of break into tears.
When someone else's pain hurts you more than your own.
When you can tell someone else life really DOES go on.
One day you wake up and you don't have to remind yourself to breathe.
You want to find a way to leave your grief in the past.
You find you are actually enjoying living.
You can come home and be content in quiet house.