FIVE YEARS LATER, 5 THINGS I HAVE LEARNED
When the sun rises this December 15th, it will mark the fifth anniversary of the worst day of my life. It will have been five years since I heard an ultrasound tech utter the words “I can’t find a heartbeat”. It will be five years since I lost my son Tyler to Twin to Twin Transfusion Syndrome and my life changed forever.
When I look back, I can remember every single detail of that day, from the weather (snowing), to my outfit (dark jeans, a black top and new silver hoop earrings) to my frame of mind. I had felt that something was wrong for about two days at this point. I woke up nervous that morning, and upset that I did not have anyone to accompany me to my ultrasound, but once I got into the car I tried to push back those feelings. I focused on trivial things, like if the staff would notice my new outfit and how well my car would handle the snow.
I remember the long walk from the doctor’s office to the high risk maternity ward of the hospital, where I was admitted. I remember the smell of the room and the way it felt to sit alone, watching T.V and listening to the heartbeat of my surviving twin Chase on the fetal monitor.
In fact, the vision of that day remains so clear, that when I close my eyes I feel that I could walk back into that memory as if I was walking into a set of a T.V show. If that was actually possible, and I could visit the scared Christina who was sitting alone in her hospital bed, watching her world fall to pieces, this is what I would want her to know.
- You are about to learn a lot about friendship.
In the weeks immediately following my loss, I found that some people whom I expected to be wedged to my side were noticeably absent.
I recently re-read a piece that I wrote about one year after I gave birth and I was embarrassed at how openly I expressed my anger and resentment towards a particular person. It was then that it occurred to me, that I no longer felt this way. I have forgiven them. In fact, the relationship is the healthiest it has ever been. This forgiveness occurred automatically over time. With another person, it was not that easy. I didn’t want the relationship to end and I invested a lot of work into healing it. The friendship suffered but is starting to get back on track.
However, for every person who blew me off there were so many other people who went above and beyond to reach out to me. These people were amazing. They left me feeling embarrassed for how I had treated friends who went through struggles in the past.
So now, whenever a friend is going through a dark time, I try to be just like the people who were my “angels”. I hope that I can make people feel as loved as I felt. I have very high standards to measure up to.
- You can’t change the past so it is pointless to live with regret.
The day our twins were diagnosed as having T.T.T.S, my donor, Chase had almost no amniotic fluid. Tyler, my recipient was overrun with fluid. We were in stage 1 of T.T.T.S. The perinatologist recommended performing an amniotic fluid reduction in Tyler’s sack which would hopefully stabilize the fluids and we agreed to this procedure.
Two days later when we went for our consultation at Children’s Hospital of Philadelphia (C.H.O.P) we learned that the fluids had remained stable. The procedure had worked; however, since there was not currently an imbalance of fluid, we were not eligible to have the laser surgery. Had we not had the amniotic fluid reduction, and we progressed into stage 2, we might have been candidates for the surgery which would have given each twin “his own” placenta.
So what if? What if I had refused the amnio-reduction? Would we have been able to get the surgery? Would they have both survived? Or would we have arrived at C.H.O.P two days later to find out that the fluid imbalance was too much and both boys died? Is not having the surgery what killed Tyler, or was the damage done by the initial surge of fluids enough to take his life? This is my first “what if” with my pregnancy but certainly not my last.
What if I had requested to be on complete bed rest? What if I hadn’t spent so many weekends walking around, showing tourists the sites of Bethlehem, PA (where I live) at Christmas? Would Tyler still be here?
After Tyler’s passing, Chase became the sole subject of my “what if’s”. When we noticed his cord blood flow steadily decreasing at 32 weeks, we choose to deliver. What if we kept him in even just a few weeks longer? Would he be healthier now? Would he not be burdened by autism and global developmental delays? Or would he too have become an angel?
It just took me about two minutes to jot down my “what if’s”. Even as I re-read them to edit, there were only grammatical changes. The list is still clear in my head five years later. I still wonder and I still repeat them out loud to friends and family from time to time.
My biggest regret of the entire pregnancy and my entire life is that I didn’t hold Tyler when he was born. I was over tired from two days of labor followed by an emergency C-section and I also feel that I wasn’t given the proper counseling to know what a healing measure this would be.
When it really gets hard, I try to remember that the decisions were made based on the information we were given at the time, and out of love and concern for our boys. Just as nothing I can do now will bring Tyler back or change Chase’s autism, nothing I did then caused them to occur.
- The loss of a child is not something that you get over.
One thing you may have noticed if you are going through grieving the loss of a child, is that when people are unfamiliar with a situation, or unsure about what to say, they tend to say some really stupid things. I remember a few years ago I ran into a friend who was a huge support to me when I was in the hospital. I mentioned something about Tyler and she paused and said “You never got over that, huh?” like she was fully expecting for time to heal this wound.
What people who haven’t gone through this (or any other extreme loss) do not realize, is that a still born or infant loss isn’t a rain storm that we need to learn to dance through. It is hurricane Katrina, a huge, devastating storm that destroys everything in its path. There is no time to dance because you are too busy trying to re-build.
Five years later, the raw grief has mostly dissipated. I rarely spend time lying in bed and crying for Tyler. I can now look at twins in the grocery store, or spot a double stroller without breaking down.
But some things are still very hard. When we found out the sex of the boys, my mom’s friend had two little blue hats crocheted for us. I still haven’t been able to look at them.
I can’t ever imagine a holiday, first day of school or family vacation where it will be okay. There will always be someone missing. I know that I will not be 100% complete until the day comes when I will get to have both of my twins in my arms.
- You are stronger than you think
When my husband and I first decided to start a family, we did genetic testing and blood work. This was the first time I had ever had to have blood taken. I was so nervous that I made him come with me and hold my hand. It was all I could do to not pass out cold in the lab that day. At the time I had no idea that I would have to endure much more terrifying procedures. Several more blood tests, an amniocentesis, and a C-section later, I was able to laugh at what a wimp I had been.
When Chase was about one I was showing a friend his N.I.C.U pictures. He was born at 3 lb. 2 oz. and later went down to 2 lb. 11 oz. In the pictures he was covered in tubes and gadgets. She looked at me and said “You are a strong woman.” It never occurred to me at the time that I was being strong. Most days it was all I could do to just make it through to bed time.
The strength to get through the medical procedures, carrying an angel baby for six weeks while waiting for my survivor to be born, a month with a child in the N.I.C.U and the many hard events that would follow over the next five years did not come strictly from within me. I drew my strength from God and my faith in Him.
- You will emerge from the dark tunnel and find happiness again.
I have been laughing a lot recently. Things crack me up. My marriage is the strongest it has ever been.
I am finding time to work out and spend time with friends. Life is returning to a new normal and it feels great!
In fact now that I have come out of the depression, I am more aware of just how dark of a time that was. I look back and see how sad I was and how that negatively affected many of the business and personal relationships around me. I feel like I am in a good place and I am continuing to grow and heal. I am finding healthy ways to memorialize Tyler.
I have also found many new friends in the online baby loss community. They have become such a part of my life that I feel that they are just old friends whom I haven’t seen in a while. I have even had the opportunity to meet several of them in person. The co-officers of the T.T.T.S Support Team are both fellow baby loss mom’s whom I met on line.
I had written the story of my T.T.T.S. experience many times for friends blog’s or books. But when Piperlyne had the idea to publish our stories on the Facebook page, I knew that I didn’t want recycle an older piece because all of them ended with Chase coming home from the N.I.C.U. Now I see that Tyler dying and Chase coming home from the hospital after one month is not the end of the story. It is only the beginning.
So back to the scared woman sitting in the hospital bed nearly five years ago. I am unable to go back in time to tell her that she would survive. That in addition to the pain, many blessings would come from Tyler’s death. I am only able to move forward. Together with my co-officers and volunteers, we will continue to build the support team (www.TTTSgriefsupport.com). Every package that is sent and every life that we touch is done in honor of our children. I know that we are making them proud every day.