Told by Lauren and Adam Mann
We met in high school at Bishop O’Connell in Arlington, VA. Although we attended separate colleges, we returned home after graduation, got married, and quickly welcomed Isaac into our family. Isaac is our firstborn, and he has three siblings. Family is very important to us! Our extended family lives in Northern Virginia. Our kids are growing up with multiple generations and get to spend a lot of time with the family and church. We believe this is also valuable for Isaac!
Isaac was a preemie and had an extensive hospital stay at the time of his birth. We found out that Isaac had a heart defect when I was pregnant, so he had to undergo surgery soon after he was born. When he was about two weeks old, we learned that he had a genetic condition, among many other diagnoses. However, we were told that its significance was unknown, so we focused on other areas of Isaac’s body that had greater, more life-threatening needs.
As Isaac grew older, he missed milestones such as crawling and walking. Initially, doctors told us that this was because he was a preemie. We were hopeful that he would catch up, but he continued to fall further behind. Isaac was one-and-a-half years old when our second child was born. As his sister grew, it became more apparent to us how delayed Isaac was. Finally, when Isaac was two years old, we saw a geneticist.
The geneticist ran tests and tried to assure us by saying that everyone has some degree of abnormality. What we were facing with Isaac could be nothing. We learned that Isaac has 4Q Chromosome Deletion Syndrome. It is estimated that only one in 100,000 children are affected by this syndrome. The amount of genetic information he is missing is minuscule, and the geneticist explained that the amount of information Isaac is missing in his genetic DNA is equivalent to a single page of a 3,000-page book. However, he was not sure how this would affect Isaac because what genes are missing in our DNA is of greater concern than the number of genes missing. This has turned out to be very significant for Isaac. He has relatively severe issues with the amount of genetic information he is missing.
He has been through many diagnoses over the years. So, it is hard to figure out what to attribute to the genetic condition and what could be related to the other diagnoses. Thankfully, a parent support group of other 4Q Chromosome Deletion kids has been very helpful to us in navigating through this relatively unknown journey. Jill’s House has also been a tremendous lifeline, providing a space for us to pause and take a breath.
We are both nurses at Children’s National in DC, which is where we learned about Jill’s House. The thought of sending Isaac to overnight respite care scared us because he can’t talk at all. We know what Isaac needs; but sometimes, even close family members have difficulty meeting his needs. However, when a coworker who also happens to work at Jill’s House shared how much she valued and trusted the organization’s mission, we decided to initiate the intake process.
He has done a few overnight stays, our other kids have attended the typically abled siblings’ night, and we have enjoyed a few mom-and-dad gatherings. The Jill’s House community seems really strong and close-knit! There are so many outreach programs for everyone in the family. We are excited to continue with Jill’s House!
The first time Isaac stayed at Jill’s House, we called a few times and were told that he was having so much fun. When it was time to pick him up, it was hard to get him into the car to go home! The joy on his face was so encouraging for us! For a long time afterward, Isaac used his communication device to say “House! House! House!”. So we knew he thought about Jill’s House often, and he now has his own “Jill’s House” button.
When you first look at respite care, there can be a little bit of guilt. But it’s nice to know that we can do something with our other children, or something for the two of us, and Isaac will also be having a good time with people we trust.
We are just so grateful for Jill’s House!