Sharing Their Joy: A Family of Nine’s Adoption Story
November 1, 2017 – CAF is proud to celebrate National Adoption Month throughout the month of November. Our goals are to bring attention to the need for permanent families for children with thalassemia both in the U.S. and globally, to provide the greater community with resources and information on thalassemia adoption, and to share the stories and perspectives of adoptive families. CAF thanks the Joy family for sharing their story with the community. We hope you are inspired by their journey!
The Joy Family
Could you tell us a little about yourself and your family?
We are a family of 9 living in southern California, Chad is a federal employee and I (Liberty) am a registered nurse. Chad and I met in college. We have 7 children total, ranging from 2 years all the way up to 19. Of our 7 children, 4 are adopted, and 2 have beta thalassemia major.
When did you decide that adoption was right for your family? What made you make this decision?
Chad and I discussed adoption before we got married, we knew it was something we wanted to pursue in the future. I grew up with a brother who was adopted as a baby and always had adoption on my heart. We were blessed in 2005 to be able to adopt our son Samuel through an open adoption situation in the US. We later went on to be foster care parents in 2011 and 2012. In 2012 we decided to pursue international adoption through the China Special Needs Program and adopted three children through this process, including our two children who have beta thalassemia major.
Daniel in China (photo provided by adoption agency in 2013)
Daniel in 2017
Ava in China (photo provided by adoption agency)
How did you learn about Thalassemia?
Children who are available for adoption through the China Special Needs Program have medical files providing basic information for families to decide whether they would like to pursue their adoption. In February of 2013, our adoption agency sent us the file for a precious little one year old boy whose special need was listed as thalassemia. At that point we knew only the basics of the disease and truly did not know what life would entail if we adopted him, and we had a very short 72 hours to research, pray, and decide whether he was to become our son.
I began furiously looking into anything thalassemia related and stumbled upon a Yahoo group titled “AdoptingThalassemia” which referred me to the Cooley’s Anemia Foundation website and to another thalassemia adoption support group on Facebook . I read every single thing on the CAF website and found the map of the US which shares the contact information for selected thalassemia centers. I immediately zeroed in to the center at Children’s Hospital of Los Angeles (CHLA) since it is near where we live. I contacted Sue Carson, the nurse practitioner who oversees the thalassemia program, and sent her the medical file we had received. Sue was very generous in carefully reviewing the medical information with me, spending well over an hour explaining the pathophysiology of thalassemia, what treatment would look like, what the complications of the disease might be, and what we could expect. After this conversation we felt educated enough to make an informed decision. We decided to move forward with submitting a letter of intent to adopt this adorable little guy, and make him our son and name him Daniel! I have told Sue more than once that the hour she spent on the phone with me in February 2013 is why Daniel is our son today, we truly owe so much to her.
After making the commitment to adopt him, we had 5 months from the time we locked Daniel’s file until we were able to travel to complete his adoption in China in July of 2013. During that time, I continued to research and learn as much as I could. One of the main platforms through which I was educated is a group on Facebook called, “Adoptive Parents of Children with Thalassemia.” The learning curve was steep, but through this group I felt like I began to truly understand and could anticipate what life would look like for us. Daniel came home July of 2013 at the age of 16 months, he is now 5 and is doing so well. He is healthy, thriving, and adds quite a bit of volume to our household.
Tell us a bit about your road to adoption. How long was the process? What were some of the challenges you faced?
Our adoption of Daniel was 12 months long and Ava’s was 8 months long. The mountains of paperwork are definitely a challenge, but nothing that cannot be overcome. The biggest challenge of all for me was definitely the wait, knowing that this child was mine, and not being able to go get them immediately was so hard.
How did you find answers to your questions about adopting a child with thalassemia?
After we received approval from China to adopt Cai we joined an adoption group that was and continues to be a huge source of support. Since this disease is rare and we are spread out all over the country it’s wonderful that we are able to connect and help one another through social media. Since then, I also run a private Facebook group for people parenting thalassemic children. We are a small group, but we are tight knit.
What are the greatest joys of being an adoptive parent to a child with thalassemia? What are the biggest challenges?
Having a child with thal has completely changed our outlook on life as parents. We slowed down, we appreciate every single second. To be honest, my greatest joys are the same with my adoptive son as my biological children. My heart bursts with joy when I get to see his “firsts,” when he shares his day, snuggles me and tells me he loves me more than anything. The fact that I get to be his mom is one of my greatest joys. Adopting Cai has also brought me into a deeper relationship with Jesus. It’s made me realize how much He loves me (because He has adopted me!) and how all of His children are important to Him. It’s such a joy to have a front row seat to his miracles!
The biggest challenge for me is watching my thal babies go through really hard medical things and feeling helpless. Some days there is needle stick after needle stick. When they can’t get a vein, we don’t have a choice. They NEED a transfusion. There are procedures and sedation and the risks that are read out loud to you time after time. You sign the papers and you keep putting on a brave face for them like everything will be ok and it’s just “routine.” But your mama heart is crushed every time you hold them when they cry through the physical and emotional pain of thalassemia. I just wish I could take it away. But it is not going away. This is their life. And on the other side of that is THIS IS THEIR LIFE! We build thal into our routine. We go to school, we get labs, we play outside, we get a transfusion, we have dinner together and we get to live this lucky life with them. We take it one day at a time and we focus on our blessings. Thalassemia takes a huge toll on the entire family, but it is also a HUGE blessing. I believe our boys are stronger, more resilient, more caring and empathetic and will one day be world changers.
For me, advocating for their needs is another challenge. Fighting for your child to get the best care possible can be hard when you don’t always get to call the shots. Their hematologist may disagree on a certain path of care which can be hard when things are constantly changing. We make it a priority to educate ourselves on current treatments and share that with our medical team. We also try to stand beside their teachers in understanding their medical needs. And we can’t forget fighting with the insurance company to get necessary prior authorizations month after month. There are just so many areas to advocate! We are at a new point where we are trying to teach them to be their own advocates. It’s a tough gig.
CAF: How did you learn about Cooley’s Anemia Foundation, and what makes you support CAF?
When our oldest son Corbyn was diagnosed, we did our research and found CAF! They have truly been a light in our life. They have helped with finding specialists, being a constant source of support, financial assistance, and the list goes on.
Many people at CAF are not just contacts, they are friends. I cannot tell you what CAF has meant to our family, especially before social media when we felt very alone in this disease. We host a Care Walk every year to raise awareness of thalassemia and our goal is to fundraise for CAF to support the work they do for us and others living with thalassemia. They help fund major research and we are progressing rapidly in care because of their efforts. They are my go-to thal experts and, most importantly, they brought us to our son and I am forever grateful.
What advice do you have for individuals who would like to adopt a child with thalassemia?
If you already have a child with thalassemia, I would say that it is a huge blessing to have someone for them to go through this with. Having someone to complain to and support you who really gets it is priceless. When we first brought our son home from China, watching Corbyn do medical things first calmed him. If he could see his big brother do it, he could too! We dubbed our boys the blood brothers and it has truly strengthened their bond. No one else in the family will ever get what they go through on their level.
If you are contemplating adopting this special need and it’s new to you, don’t be scared! It’s overwhelming at first, but you will get in a groove and you have so much support now days. These children are worth it!
Some important logistics I believe you should look into before you pursue adopting a child with a chronic disease such as thalassemia are your insurance coverage options, the distance between where you live and a transfusion clinic/hospital, and your career flexibility. Things come up last minute with thal, transfusion schedules change and I believe it’s important to be in a job that supports and understands that. Also, you have to understand that your child could have other needs besides thalassemia. Multiple diagnoses are difficult to juggle, BUT AGAIN they are worth it and you wouldn’t think twice if your biological child was born with a special need. You’re a mom, you do it!
Is there anything else you would like to share with the community?
I just want to share that our own supportive community matters! I am so thankful for our thal community, but our community of family and friends supporting us day in and day out is so important, too.
We are extremely grateful when you hold our hands, celebrate our victories, listen to us cry and show up for us. I am continuously amazed at how great our friends are. Everyone who bring their kids to our annual Care Walks. Our friends who explain thalassemia to their children. Our family babysitter who helps us juggle appointments. And their teachers who provide an inclusive environment with their peers.
I also just cannot share about my brave boys without recognizing their supportive sister! Special needs siblings are, well, super special. Sister is always at their transfusions, long appointments, getting them drinks and helping them in any way she can.
In our home, adoption means love and thalassemia means life!