An Unexpected Journey

“Sometimes an unexpected turn in life leads to the biggest blessings.“

Sometimes life takes us places we had not planned to go. Places we might not choose to go. Places that will forever change us. Stepping into the unknown can be scary. Then, along with the scary comes the joy, along with the adversity comes the strength. Along with all that we perceive we have lost come the blessings. So many blessings…

I will never forget the day my world shifted.

At the time I might have told you it was the worst day(s) of my life. Looking back from the other side of the great abyss that separates my “previous life” (the one that came crashing down around me that day) with the “alternate Universe” I now inhabit. I can absolutely confirm that that day brought with it the most incredible blessings and the greatest opportunity to discover my true strength and commitment, to truly learn what is important in life.

The day started out just like any other. It was just a few days before Thanksgiving in 1999. A typical soggy gray Western Washington autumn morning. After dropping my oldest and youngest sons off at the Middle School, I pulled into the elementary school to drop off the middle two boys, late, as usual.

While the boys gathered their backpacks and lunches and scrambled out of the car excited about their day, I absentmindedly looked up and noticed the “Little Bus” pulling up to the curb to drop off a student. You know the bus I mean, the bus for “those kids.”

As they unloaded the young boy in his wheelchair I sat there watching, my hand on my abdomen casually cradling the “slight bump” of my little girl. I wondered with awe and that unnamed fear we experience when witnessing things we don’t understand and are not quite comfortable with, “How on Earth do those parents do it?”

My lifetime membership to their club

I waved goodbye to my boys and headed off for my day to prepare for Thanksgiving. As I drove away a feeling of unease came over me. An hour or so later my cell phone rang. It was my doctor with my invitation and notice of my lifetime membership to their club…

My mind was racing. The doctor was talking but I only caught pieces. Problems with the baby. Something about a two vessel cord. Cysts in my baby’s brain. “We’ll need to do more tests after Thanksgiving.” he said. Thanksgiving? Seriously?

Somehow we got through Thanksgiving and the next few days. We were sent to a specialist for additional tests. Another ultrasound. Whispered voices, club feet, possible problems with her heart, small gestational age. Crazy thoughts racing through my mind, “If she has clubbed feet then what shoes will she wear to her prom?” None of it made sense to me.

We were taken to a conference room for counseling. Based on the markers they had found (markers means problems with the baby) they believed that our baby had a Trisomy. This means that she had 3 copies of one of her chromosomes rather than the typical 2) They thought it was likely she had either Trisomy 18 (Edwards Syndrome) or Trisomy 13 (Patau Syndrome) or there was a chance that it was Trisomy 21 (Down Syndrome). They told us that if it was Trisomy 18 or Trisomy 13 our baby would certainly die.

Further tests could confirm what we were dealing with. This meant doing an Amniocentesis. We wanted to know all we could so we agreed to the test. The test was done and we went home to await the results. We were sad and we were scared. The way they described our baby made it sound like she was an alien creature.  We wanted our baby to be okay and most of all we wanted our lives back. After days or worry and waiting, the results came in, Trisomy 18.

“You could lose her any day.”

“You could lose her any day.” said the doctor. “She might survive to birth but will certainly die either during or right after delivery. You can wait it out or if you’d like we can “interrupt” the pregnancy. That will get this behind you quickly and you can try again.” Try again? She’s our baby not a lottery ticket. This baby matters.

We were given no hope. We were told we would not bring our baby home. We were told she was not a “viable” pregnancy. We were offered genetic counseling. We were offered the opportunity to “interrupt” our pregnancy. The one thing we were not offered, was hope. And hope was the one thing we desperately needed.

The next few days were a blur. Before this news the baby had been very active and very much alive. I noticed she had stopped moving. Was I losing her already? I spend the evening scouring the internet for answers. Then one night, there it was… I found stories of others who had traveled this road. I found families. Many of those families had lost their child but some of those families had children who were living with Trisomy 18. And one thing they all had in common whether their child was living or not was they all felt blessed by the experience. Their child was a valuable member of their family. Here was our HOPE!

At that moment my little girl kicked, and then wiggled as if to tell me, “Mom I’m still here, I just needed to know we’re are in this thing together.” At that moment she stopped being something to fear and became once again my little girl. I knew then that while our time might be limited, we were going to make the best of the time we got and celebrate this precious little life every day.

On my next appointment I shared my findings with my doctor. Instead of sharing my excitement she looked me in the eyes, slammed her fist on the table and said, “You’ve got to get this through your head. This is NOT a viable pregnancy. There is NOT going to be a baby to bring home from the hospital. The sooner you accept this, the better for you and your baby.”

Months of Limbo

The next few months were what I refer to as Limbo. Those months of worrying, and wonder. Those months of tears and anger. The highest of highs and the lowest of lows. All on the journey of bringing our daughter safely into this world. Those months of walking two paths: The path where we plan for our child’s birth. And the path where we plan our child’s funeral. All the while trying to hold on to hope and yet knowing that we could lose our baby any day.

As we grew closer to her due date we presented our doctor with our birth plan which included a possible c-section if necessary. Our doctor rejected our plan, refusing to even consider a c-section. “I will not do an unnecessary surgery on you because this baby is going to die either way. I won’t even allow her to be monitored during labor so you don’t know when she dies.”

We were livid. This was our baby. She deserved a chance. And, we should be the ones making the decisions. The doctor was fired and we asked another doctor to deliver our daughter. The new doctor wasn’t thrilled with the idea of a c-section but agreed it should be our decision. We explained to him that we understood the baby could die, but it was extremely important to us that she be born alive. “If we have 30 seconds to look her in the eyes and tell her we love her it will be worth it to us.” 

As our due date approach I started to feel anxious. I knew that each day closer we got to her “birth day” brought us that much closer to having to say goodbye.

A Blessed Day

March 25, 2000 was a blessed day. Kristina Rachel came in to this world via c-section and was pronounced “a Miracle” by her doctor. She was tiny, just 3lbs 10 oz and she was beautiful. She required no intervention at birth, just a little bit of extra oxygen. . They weren’t really sure what to do because they were expecting her to die and this tiny child was all about life and living! They placed an NG (feeding) tube to make certain she was getting enough to eat and aside from that and being very tiny she was not really different from any other newborn.

After 5 days in the hospital we went home. We knew the hospital was sending her home to die and we also knew that there was nothing they were doing for her that we couldn’t do at home. We also knew that at home she would be surrounded by the love and energy of people who believed in her and in her possibilities. 

The next few months were a roller coaster ride. Every morning I would wonder if today was the day I would lose her. After living in fear of her dying for months, my husband, after finding me sobbing yet again about this tragedy that had befallen us, told me: “We are not living her death any more. From now on we are only living her life.” From that moment on our focus has been on helping Krissy grow and learn and become the incredible person she was born to be.

My Greatest Teacher

From the beginning Krissy has been the greatest teacher I’ve ever had. This little girl who can not do anything to care for herself is so filled with love that no matter how much she needs, she still gives far more than she takes. She is a beacon of light. She has taught me to believe in possibilities. She has taught me what it truly means to give of yourself. She has taught me that we create the world we live in. We can choose to be happy in spite of unimaginable odds. Life is a gift and no one I know has celebrated that gift as beautifully as Krissy does.

Today that little girl is a young lady and that “Little Yellow Bus” has been coming right to our door for 16 years! Kristina is 19 years old and after graduating in 2018 now attends the transition program at her high school. Krissy may not be your typical teen but she continues to teach and lead and share incredible love and happiness. Because of her, we have friends around the world. She blesses our family in ways we could never have imagined. Her influence helps us view life from a stronger perspective. One thing I know with certainty, I am a better person because Krissy is in my life.

Krissy truly is my Super Hero.

There is much more to Krissy’s Story and from time to time I will share an experience or life lesson she has taught me here on Empowered Wisdom. To stay up to date with Krissy’s adventures follow Krissy’s Story on Facebook.

Thanks for reading our story and always remember to Embrace the Journey!

Abundant blessings,
Terre