Return to Zero Submission

I talked about the film Return to Zero here

They are asking for families to write the stories of their children, and will actually select 80 to publish in their book.  You can learn more here

This is my submission:

Dylan, and Noah's Stories

My husband and I were married in September 2010 and knew that we wanted to start a family right away.  In December, we found out our family would be growing that following September. The pregnancy was completely normal.  I had morning sickness, with the full strength cravings. I avoided the things I should have and did everything I was suppose to do. We were SO excited to learn if we were having a little boy or girl as we walked into our 20-week ultrasound. Little did we know, it would be the worst day of our lives. We learned that our son, Dylan, would be facing many obstacles.  They noticed an issue with Dylan’s eyes and intestines, along with a cleft lip and palette.  Each defect on their own would be manageable, some even repairable. The issue was why all of them all at once.  The doctors knew there would be surgeries, but we wouldn’t know the extent of Dylan’s challenges until he arrived. The doctors tried to prepare us as best they could, and even offered aborting my pregnancy. I told those doctors, that even if I only had minutes or days, I would be carrying my baby as long as he’d let me. He deserved that much. And in all honesty, I was in love when I first got my positive pregnancy test. Dylan was born on August 14, 2011 via an emergency C-section. He let out two cries so that we knew he was there, and then the NICU team rushed him away to work on him. I was able to see a picture. I was unable to see my sweet boy until about 36 hours or so, because I couldn’t walk after surgery. Knowing my baby was sick and that I couldn’t go to him was gut-wrenching. Dylan couldn’t breathe on his own and needed to be intubated and hooked up to a ventilator.  His chest formed poorly that would not allow his little lungs to work properly. The moment I was able to see him, I fell head over heels in love. 

Throughout countless blood draws, assessments, diagnoses, and eight surgical procedures, his little body and enormous spirit forgave, and loved unconditionally. If he was startled or scared he'd begin to cry for a moment just to let you know, and an instant later, would stop and forgive. Dylan showed us life and love in the absolute purest form. He knew no race, religion or of any matters/beliefs the rest of us allow to get in the way. He is the definition of forgiving and patient. Dylan is the strongest person I know, he fought and fought, but in the end, his little body just couldn’t.  With the help of palliative care at our wonderful Children’s hospital, we brought Dylan home on October 17^th.  We were able to take him outside where he was able to feel the sun on his face and feel his little hand wave through blades of grass. He was able to met his cat and dog and be held by all his grandparents, some great grandmothers, and his aunt and uncle.  Dylan passed away later that evening in my arms after my husband was telling the doctors how we wouldn’t have changed a thing, that Dylan was perfect just the way he was.

The doctors were not able to give us a definite reason why Dylan had the genetic disorders he did.  We did all the routine tests and everything came back normal. We are dealing with an unknown genetic disorder. The best way to describe it is to think of a huge downtown library with tall rows of books. Each row of books represents a chromosome.  Know go find the missing word.  Without me telling you which row, which shelf, which book and which page.  This isn’t a “can’t you test for it” kind of thing. The genetics team we are working with are trying VERY hard to locate the issue and gave us a 25% chance of reoccurrence. (25% meaning it would be a recessive genetic disorder meaning that both my husband and I would have the same genetic defective-which by itself is 1 in a million).  It could also be a fluke, a one time DNA mess up. The genetics team didn’t think that this was what we were dealing with, but again, they couldn’t tell us much so we were not going to give up hope that it was a fluke.

What did we want more than anything? A biological baby between the two of us.  So try again we did, and in September 2012 we found we were expecting.  We were excited and were terrified.  We knew right away that regardless if we were having a boy or a girl, that Dylan would be their middle name. We later found out, at our 12-week ultrasound the doctors thought that our baby might have the same intestinal disorder, but we needed to wait until he/she was bigger.  We were worried half to death, but wanted to continue on enjoying the pregnancy by giving into the chicken finger cravings and by taking the weekly bump pictures.  We went back in a few short weeks later; only to find out we would be re-living the same nightmare. Noah was found to have the same birth defects and genetic anomalies as his big brother, Dylan.  We knew that we didn’t want to put Noah through everything that Dylan did.  All those surgeries and procedures… We were told that we had a 50% chance of Noah surviving the delivery and prayed constantly for the opportunity to meet our son. Those prayers were answered on January 30 when Noah was brought into the world. We were blessed to have just under 2 hours with Noah.  Long enough to tell him over and over that we love him.  Long enough to kiss him all over.  Long enough to hold him. 

My husband and I try every day to keep going, to be strong.  We want to be better people and to honor our children the best way we can.  We tell their stories to anyone that will listen.  They inspire us daily. We have raised money for the March of Dimes and Children's Hospital of WI.  We have donated food and care packs to our local Ronald McDonald House and the NICU. We do good things in their names to make them proud and will continue to do so until we meet them again. They live on in our hearts and we feel their presence everyday.