Turning Three with a Trisomy
Three was always one of our lucky numbers, but even more so when our twins recently celebrated their third birthdays. Back in 2016 when we received Anastasia’s diagnosis, the geneticist told us that the first three years are the worst and Anastasia may not even make it to three. The doctor predicted several horrible scenarios that have haunted us ever since.
Thankfully many of those hypotheticals haven’t come true, but some did. Yes we have found our daughter turning blue in her crib from lack of oxygen, we have watched her have countless seizures, and we have held her during many tests, hospital stays and after surgeries. But despite all of those heartrending moments, Anastasia is still with us, and she has proven some of the experts wrong.
What has helped us the most along the way, are the new friends we have made and the support we have felt from our community. Often without us even asking for help, people have made meals, visited Anastasia in the hospital, walked our dog and donated therapy equipment. We have appreciated it and needed it.
We always reflect a lot around the twins’ birthday. Aside from the obvious reasons such as another milestone being reached and a cause for celebration, the twins’ birthday also falls between Mother's Day and Father's Day. We still feel uneasy around Mother’s Day and Father’s Day. For years those events were painful because many friends and family celebrated becoming parents while we struggled through infertility. Even after adopting the twins, those holidays can be tinged with stress or sadness because often Anastasia can’t attend family parties, and she simply can’t experience life like all the other children who are celebrating their parents. Most of all, we have friends and family who want to be parents but can’t because they haven’t met the right person, are experiencing infertility, suffering through miscarriages or mourning a stillborn child. We know and respect their pain.
This year was particularly hard because just before Mother’s Day our beloved dog Duchess died. Duchess was special. She loved the twins as much as we do and protected them until her last day. She died at home next to Anastasia’s wheelchair. As we said goodbye to Duchess, we asked her to take good care of Anastasia because Duchess is likely to greet Anna on the other side before we do. It was a painful time, and sometimes still is. Duchess was loved not just by us, but by so many others too, as evidenced by the dozens of messages, flowers, photos and cards we received from the people she had helped in her life as a therapy dog with the Canine Therapy Corps of Chicago. We will never forget Duchie; she will always be a part of our family. Duchess, you healed hearts, and we miss you terribly.
It was difficult attending to the 24/7 care for Anastasia while trying to also care for Duchie in her final weeks. Anastasia’s seizures resumed shortly after Duchie passed, and Anna had to go back to the children’s hospital to determine what kind of epilepsy she was now developing. It was a hard month.
However, brighter times are coming! These events propelled us to apply for a service dog for Anastasia, partly in honor of Duchess, but mostly because Anastasia needs help.
In the near future, a service dog center in Ohio will select three puppies who seem especially suited to detecting seizures and will train them for a year, specifically to work with Anastasia. We are already collecting clothing that Anastasia was wearing when she had a seizure and sending it to the center. The dogs can smell the chemical change in Anastasia's brain before she has a seizure, and they will be trained to alert us when that happens. It's amazing! We'll then spend two weeks at the center training to handle each dog and ultimately one will be chosen to be Anastasia’s best friend.
The dog will wear a special harness that will help Anna learn how to walk, and it will carry Anna’s emergency medications. The dog will be trained to tow Anna’s wheelchair, open doors, take her jacket off, pick up her toys, calm her down when she is overwhelmed and even dial 911! This special dog will learn around 80 commands and will be Anna’s constant companion. It will alert us if Anna stops breathing. (At the moment, Anna can’t sleep without constant supervision, which means that we often don’t sleep.) In short, a service dog will make Anna’s and our lives safer and easier.
At the same time, we are hoping to convert our minivan to a wheelchair-friendly van. Anastasia is growing and it is getting more difficult to lift her into our car along with all of her equipment. A specialist company in Minnesota will convert the van over two months. It will have a lower chassis, a side ramp and interior clamps to tie down Anastasia’s wheelchair, so she can easily accompany us on family outings.
We are excited about the upcoming changes to improve Anastasia’s quality of life and also ours. However, the changes come at steep costs that are not covered by our health insurance. Anastasia qualifies for a grant to pay for the majority of the van conversion costs, but not everything and there is no funding available for seizure dogs. All families applying for a seizure dog must fundraise on their own.
The bottom line is that we need to raise $17,000 to pay for the service dog’s training and another $7,000 to complete the wheelchair van conversion. We hate asking for help; but if you have fundraising ideas or would like to make a donation, our family would really appreciate it.
Please email fundraising ideas to: trisomy9mosaic@gmail.com.
Donations go directly into Anastasia’s equipment and therapy account and can be made here.
We are so grateful for any help or advice you can offer! We will keep everyone updated with our service dog and wheelchair minivan journey!
* To view a video celebrating Duchess's life, click here.
