contributed by Jordan Zak, mom to Sawyer (living with PWS)
On June 27th, 2021, we welcomed our first son into the world. Grant was born with Trisomy 18 and due to heart complications, he passed away on June 29, 2021. Our hearts were broken but we knew his life had meaning and there was a purpose in the plan God had laid out for us. We decided we would move forward with the adoption process. Our son Grant had prepared us to be medical parents, and we still felt that calling and decided that opening our hearts to a child with a chromosome disorder was a way to honor Grant and help a child who needed medical support. At first, we thought we would be matched with a child with Down Syndrome as that was the only chromosome disorder we could think of other than Trisomy 18 and 13. When we got the call about our daughter, I had only heard of PWS in passing or watching clips of interviews on social media, we were unaware that it was a chromosome disorder. We quickly joined Facebook groups and reached out to others who had adopted a child with PWS before making our decision. Although we did not go out searching for a child with PWS we believe everything worked out the way it was supposed to.
Have you adopted other children and if so, is the process different depending on whether or not they have medical needs?
We had never adopted a child before, but we were informed that the adoption process was very similar to that of a typical child. We decided to push our adoption process longer and fill out forms for adoption subsidies. In our home state of Ohio, Medicaid is not awarded to all disabilities, and we can receive Medicaid from our adoption subsidy. That is the only difference I believe between our adoption and that of a typical child.
What kind of supports are there for adopting a child with a syndrome like PWS?
We are in a couple of Facebook groups but we have not found much out there for us so far. At this point, we are trying to navigate life as parents to three children differently. We would love to find more adoption support as questions will arise eventually and we want to be best prepared to help Sawyer with any trauma that she will experience. In the beginning, we were trying to wrap our heads around PWS, and we began building our support there. Finding Kebra and Saphira a fellow PWS family helped us so much. Although we are hours apart, I know Kebra is only a text away when a PWS thought pops into my mind. We are slowly building our village and know that as Sawyer grows so will our support. We have a great family who supports us and has stood behind us from the beginning. Without them, we would not be able to provide the life we do for our children. We are also lucky that Sawyer’s adoption is open. If we ever need more medical history, we can reach out to them. It is also nice to know that Sawyer has family from all parts of her life supporting her and encouraging her to be the best Sawyer she can be.
What has been a challenge and what has been encouraging?
A challenge I try to overcome every day is comparing Sawyer to other PWS children. The benefit of having a large Facebook community is that our questions are answered quickly, and we can build relationships with other families going through similar situations. The downside is we see all the milestones everyone else meets, some faster than others. Sawyer is now 3 and is not yet walking. It is hard to see children younger than her walking and running. Comparing often darkens all the amazing things Sawyer has done and is doing. I do my best to try to remember what milestones she has met and remember how far she has come. Every PWS child is different and creates their path.
Something that is encouraging is that Sawyer is always happy. Sawyer doesn’t compare herself to others she just lives her life as her. Every morning she wakes up happy and ready to take on the world. Everyone around her always mentions how she is always happy and smiles all the time. Sawyer has not met a stranger and loves all the people she meets. Sawyer recently started preschool and walked right into the building without even a look back. Sawyer walks through life with a positive attitude, and love for all, I know that Sawyer will move mountains, it just may look a little different than the typical person.
How has your loved one integrated into your family?
We met Sawyer for the first time on December 7th, 2021. Not even 6 months after our first son had passed, we were welcoming a new life into our world. Sawyer brought so much light back into our lives that I can’t even begin to describe what that first time seeing her felt like. Sawyer has always had a way to draw people toward her and it all started back in the NICU. The entire NICU staff adored her and became very protective of Sawyer.
We were the second family to come into Sawyer’s life, so they were hesitant to welcome us in the start. One evening as I was feeding Sawyer, I remember her heart monitor beginning to peep. The sound of that machine brought me immediately back to the NICU with Grant. I lost all control and began crying as I held Sawyer, praying we would never have to relive this sound again. The nursing staff quickly adjusted the monitors and what I thought was an emergency was just a moved sensor. I believe it was at that moment that the nursing staff knew Sawyer was a part of our family. Seeing my emotion during that moment I could feel the hospital staff let their guard down and begin to welcome us into their circle of trust. I never needed a moment to know that Sawyer was a part of our family, but this helped solidify something I already knew.
When we brought Sawyer home our families welcomed her with open arms. We believe that God and Grant knew exactly what they were doing when they brought Sawyer into our lives. A year after bringing Sawyer home we welcomed a new son into our family and Sawyer and Henderson are amazing as siblings. So, Sawyer has always been a part of our family, God just knew it before we did.
If families are interested in adoption, where should they start?
I think the first place for families to start is to ensure that they are willing to open their hearts to anything that comes their way. Adoption is not a pretty picture, we had a choice in the crayon that is used for the drawing but Sawyer is still able to draw her own picture. We knew that we were going to love Sawyer no matter what life brought with it and that is how we knew we were ready for adoption. Another thing that they could start doing is researching adoption agencies in their area. Some agencies have virtual question sessions. These sessions can help you determine not only if adoption is right for you but also if that agency is the right fit for your family.
Do you have advice or words of wisdom for families considering adoption?
The words of advice I have for families considering adoption is the wait is worth it. Our story is different, and our adoption was very quick. However, our journey to parenthood was long. If we had never stuck with our journey and had given up after the first bump in the road, we would never have seen how great our life turned out. We now parent three children in 3 completely different ways but I would never change anything about our life, even the hard times.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.