Bryce's meaning in life

Dear Bryce,
Walk barefoot and build your dreams...



Baby of Mine (Lullaby from Dumbo)

Baby Mine, don't you cry.
Baby Mine, dry your eyes.
Rest your head close to my heart,
Never to part.
Baby of mine.

From your head down to your toes,
You're not much, goodness knows.
But you're so precious to me,
Cute as can be,
Baby of mine.

But you're so special to me,
Sweet as can be,
Baby of mine.

I sung this lullaby to Bryce after his delivery.

We have been struggling with one main question, WHY? Why was Bryce so unlucky to have Trisomy 13? Why even with this, did his diaphragm not close correctly? Why didn't I miscarry in the first trimester? Why was Bryce's heart so strong, to survive as long as he did? Our answer to at least some of these questions are: Bryce fought to be known, and not be forgotten. Bryce wished to have an impact in this world, and he wanted to be loved.

There is a meaning to Bryce's life.

There are so many gifts that Bryce gave to us. I never imagined that I would have to make this type of decision. I never fully appreciated the miracle of life and also the depth of my love for my children. I never realized how much I love being pregnant and caring for a baby in the womb. Bryce showed me my magnitude of what it is to be a mom. He gave me the gift of knowing exactly how I love a child.

I am in anguish about my son Bryce.

The night of discovering we would have two boys, our main fear was that Bryce would be in Zane's shadow. That he would always be compared to his big brother. We questioned if we could love a second child as much as we love Zane, and how unfair that would be to Bryce if we secretly did not. We were incredibly wrong. Bryce gave us the gift of knowing the depths of how capable we are to love another child, that the soul of our heart can expand enormously for ALL of our children.

I mourn my lost son Bryce.

Bryce gave me the gift of delivery. With Zane, I had a cesarean and even though he was a beautiful healthy boy, I was always disappointed that I did not deliver naturally. Obviously the circumstances were not as I imagined, but given my other choices I found peace in being able to hold and love him. I found solace in my labor and delivery.

I weep for my beautiful baby boy Bryce.

The circumstances surrounding Bryce's condition were unusual enough that it caused a re-evaluation of the previous genetic tests and conventional ultrasounds that were run. Bryce is being discussed by various medical personnel to determine why didn't medical science catch his conditions earlier. Our obstetrician, the genetic counselors, the radiologists are all looking into what they can learn from Bryce's situation. The data are still there, Bryce will continue to be studied.

I am humbled that many wish to know and fully understand my son Bryce.

Bryce was circumcised. There were two reasons why we chose to do this. One, to give him the mark of the covenant - like his father and brother. Two, to collect Bryce's cells. Some may know that with Zane we did the same. Gusti's lab works on a pathogen that needs to always live within cells, and to grow the parasites you have to also grow human cells for them to infect. It just so happens that human foreskin fibroblast cells are easily available at hospitals. Various labs collect these samples (if parents wish to donate) and use them in their studies. We collected Zane's foreskin, and his cells have been used by Gus for his own research purposes. We decided to do this with Bryce as well, except the cells will not be used for Gus' research but instead be donated to the leading tissue and cell line consortium ATCC for research purposes. They have Trisomy 21 cell lines, but not Trisomy 13 or 18. Bryce's cells will be the first Trisomy 13 cell line available. In addition, the perfect control cell line would be a sibling from the same set of parents. We will also donate Zane's cells for control studies. Although there can never be a cure for any trisomies, researchers can use Bryce's cells to help understand the molecular and genetic mechanisms of these chromosomal disorders. Bryce's cells will aide science, families and their children inflicted with Trisomy 13.

I am in awe in what we can learn from my son Bryce.

Finally and on a slightly lighter note, Bryce keeps us grounded with Zane. Our sweet little terrible two boy can sometimes push our buttons. I am sure Zane hates it when he is so upset to throw a tantrum and all we do is smile. Bryce reminds me of how much I actually love to hear my son's cry.

There are so many gifts that Bryce gave the world and we have yet to determine the full impact of his short life.

I will always love my sweet son Bryce.

Bryce, my son, you were wanted. You are loved. Your spirit will continue to live in so many hearts. We will learn from you and your life for many years to come. You will not be forgotten, you will be remembered. I love you Bryce, I love you.

Thank you for those that read this and care to learn about and remember my son Bryce. This is a gift that we can give to honor him.

The photo above was taken professionally free of charge by a photographer at the hospital. A surgeon, whose love for photography and patients began this nonprofit organization. I am very thankful to have such an artistic and beautiful photo of my son. My hands cradle Bryce.