Bereaved Parents, special needs child

Take Him Home and Love Him (death of a special needs child)

by Cheryl Pacquette

Cheryl Pacquette and Bryant

Bryant was born in 1989 when there was little information given to young mothers in a “no known risk group” pregnancy, even if said mother was insisting ‘something’ was wrong. Our tiny town hospital did not even have an ultrasound tech on duty when I went into the hospital at 36 weeks because Bryant had stopped moving. They had to call someone in, around midnight and that’s when we found that the baby was in fetal distress due to Polyhydramnios. [This is an excessive accumulation of amniotic fluid. The condition may increase the risk of having a cesarean section]. Still, because of the ‘hour’, surgery was scheduled for 8:00 a.m. and the OB doctor said “I haven’t lost a patient yet” and walked out of the room leaving me with a fetal monitor on and a dread I could not even begin to describe.

At 8:00 a.m., I had an emergency c-section and was promptly told that I could have other children because “this one is grossly deformed and is going to die”. They continued (I was not even sewn up from the c-section) to inform me of the facts I already knew. I was young, could have more children, and this one was going to die. I assumed he was already dead because usually doctors ‘sugar coat’ things and I figured if it was this bad, he surely must have been stillborn. However, that was not the case and I was wheeled in to see my little deformed baby and that was precisely when Mama Bear kicked into high gear. I demanded to be transferred with him to the hospital with a NICU [Neonatal Intensive Care Unit]. They told us he would die within 24 hours. I said either you transfer me with him or I sign myself out and go up anyways. So they arranged for an ambulance.

Bryant did survive, but he spent four long months in the NICU fighting everything from full codes (cardiac and respiratory arrest) to Necrotizing Enterocolitis [This is the death of intestinal tissue. It most often affects premature or sick babies] and congestive heart failure. He was given a feeding tube on February 14th, two weeks after his birth (Valentine’s Day) and a tracheotomy on March 6, about six weeks into his short life. He was on full life support and finally, after all these awful events and near death experiences (one code lasted two hours) they gathered us to a room, said they could do nothing more for him, and if my wish was to take him home to die, they would fulfill it.

I was jubilant. Surely, I knew I could take great care of him. In the NICU, while the nurses were okay, they seemed to fuss over the ‘cute babies’. I would arrive, Bryant would be laying in his crib, with a tube hanging over him with his food and drool all over his face and a dirty diaper. I would ask why he wasn’t being held or changed or whatever and the nurses would say, and I quote “Go for it”. It was horrific and because of his facial differences, he was definitely treated differently, along with the assumption that he was going to die and was blind, deaf and profoundly ‘retarded’.

He was neither deaf nor blind nor retarded, which really isn’t even the point. Even if he had been, did he not deserve the same affection and love? One doctor, the Neurologist did say that to us, “Take him home and love him” and that’s precisely what we did. While Bryant did, in fact, die at home, it was 20 years later.

He came home on full life support and our tiny apartment was turned into a miniature NICU. Slowly, we were able to help him and get other medical interventions, which, in turn, got him off life support, breathing on his own and that’s when the real adventures began.

Bryant had an uncanny knack for knowing 1) who could help him and 2) and probably more importantly, who he could help. The two went hand in hand and Bryant’s entire life was a reflection of a truly gifted spirit guide helping others along this path and journey.

Society may not always view those with disabilities or physical ‘imperfections’ to be perfect, but Bryant was. While challenged by his physical and medical issues, he was, to me, perfect in soul and a steadfast teacher in so many ways. Bryant never was the victim – there were times he needed help and assistance which he graciously accepted, but he would then be sure to return the favor. He was a strong advocate for persons with disabilities and other advocacy issues. He wanted to make a difference. He was only given 20 years, but accomplished more in that time than many do in a life-time. And he definitely taught me so much about life and love.

Missing Bryant is non-stop. It’s 24/7 ~ 365. But he lives in everything and seemingly is everywhere. That makes me smile and that makes me proud. I know he had affected so many people through his life and patience with us. Teachers who worked with him are now Administrators and credit knowing Bryant with so many positive things in their lives. I am in contact with many of the people who knew Bryant and am humbled to receive e-mails and letters about how his life has affected and impacted others in a positive way.

When all is said and done, that’s what we hope to do for our children. To have them live a life to the fullest and to make their mark on the world. Certainly Bryant did this and much more. He still teaches me every day. His appreciation for the beauty in life and the beauty of the inner person, the soul and spirit, is something that really can only be taught by example. And my spirit guide, Bryant, was the best.

My doctor mentioned to me after Bryant passed that not only did I lose my son I lost my ‘career’. Bryant and I were heavily involved in advocacy and I continue upon that path. Initially, I wasn’t sure if I still fit in. He actually passed away during the tail end of my Leadership Series through the University of New Hampshire. I continued on with it even though it was difficult; but it was my way of showing Bryant I would continue on. Just this past month, I received a request from our local Disability Rights center to publish his picture alongside an article for medical services for our State. I am honored. We also have established a Scholarship Fund for those at the high school he attended who are going into some type of advocacy. And the Arts. Bryant loved music and the Arts 🙂 I continue with the Leadership Group and am on several boards that deal with issues facing our youth, both disabled and non-disabled. Bryant taught me to be involved and stay involved.

Bryant shares the best place on earth
with his family

I write this on vacation. We are going to the “Happiest Place on Earth”. Bryant LOVED Disney and this will be my first time back since he passed. I am sure it will be emotional, he loved being there so much and we used to go every year since the first visit, which was a Wish visit (I am still also involved with the Wish group as well as helping other families). I know for a fact that Bryant is smiling and proud. That’s his Legacy. Life and Love. A beautiful spirit who I was so honored to know and love.

I have much to do to keep up with the life Bryant lived and find myself sometimes falling short. But I know it is a tribute to him to continue the work on behalf of others. His siblings also carry the life lessons from their brother and miss him terribly but they have found ways to connect with him as well; his sister is going into Special Education; his other sister is involved with the School Band and Orchestra (clarinet / cello) and wants to do something in the medical sciences. His brother is still young but I know that Bryant’s spirit and life will continue to move us all in finding new paths and journeys. That’s what his life was all about, growing, learning, teaching and always inspiring.

I miss and love you xo xo Bryant.

About the Author: Cheryl Pacquette has been married for 23 years to Dave, the love of her life. They have four children; Bryant, Emily, Julia, and Liam (21, 13 and 8). All of the Pacquette family are proud to be New Hampshire natives. They currently reside in New Boston, NH.

Cheryl has an EMT License, is an active Certified Emergency Response Team (CERT) member for FEMA, and is currently enrolled in college for a Business Degree. She has recently completed the University of New Hampshire Leadership Course and serves on the High Hopes Wish Foundation Board as the Information Advocate. Cheryl has been appointed by the New Hampshire governor to the Special Education State Advisory Committee (SAC) on the education of students/children with disabilities. Her true passion, besides her family is writing. Cheryl believes that we all can learn something new every day and we can also teach something new. That’s her goal day to day. You may follow Cheryl on Bryant’s Blog.