Up until 2011, life seemed pretty “typical”. I had been married for almost 10 years, we had one child, both my husband and I were working full time, and my career had really taken off. We relocated three times – across the Midwest – for my job and I had supervisor responsibilities spanning across 36 states and 3 times zones. I completely threw myself into work and felt like the sky was the limit. Although we were pretty content in general with our little family, we were always trying to have more children and put our desires into God’s hands.
Then, in 2011, we found out we were pregnant, and not just pregnant with one baby – but with twins! This was absolutely unexpected. By that time I was almost 40 years old and was worried about the pregnancy. Still, we felt very blessed for this opportunity to grow our family. This pregnancy was much more difficult with carrying two babies, as I am a smaller person at just under 5 ft tall. The twins were born just a bit early at 33.4 weeks and this was when our life as a family changed forever.
Our twin boys were born with severe reflux and one of them also a very rare heart defect that required open-heart surgery as soon as possible in order to increase his survival rates. We spent two full months in the NICU getting them well enough to go home and then another month in the PICU at a Childrens Hospital a state away for one of them to get the heart repair.
Once we were all home, our house looked like a hospital – heart monitor’s, oxygen tanks, CPR protocols for the reflux in additional to all of the necessary baby items for two babies. We decided my husband would stay home from work full time to care for them. It was a very very difficult transition. Because we had moved for my career, we were not near any family, so we relied on our community and church “families” as much as we could.
Believe it or not, those first few weeks were just the beginning of many more challenges to come. Both of our twins were diagnosed with autism by age 3 (they were non-verbal) and then also ADHD by age 5. They had vast developmental delays. We started utilizing school district special education services as well as county special needs services. Understanding and navigating these disabilities was all very confusing, exhausting, and unbelievably challenging. There were so many doctor visits; so many assessments.
During this time, my husband also was going through health challenges. He had been a type 1 diabetic since adolescence and had very uncontrollable sugars. This caused many additional health problems and side effects. He underwent a pancreas transplant when the twins were 3. In fact I remember getting a call at the transplant house at Mayo with the confirmation that our twins were “officially” diagnosed with autism. I was his primary caregiver for the months that followed his surgery.
Throughout this time, our oldest son had to grow up very quickly. He went from being the only child, to being an older brother – of two boys with multiple health conditions, the “man” of the house when my husband went through his surgery, and an active caregiver for any and all things needed. He joined almost every medical appointment and was a part of any of our necessary treatment decisions. I watched him struggle – a lot. His world had completely changed. Yet, with all he had to bear, his level of understanding and empathy surpassed anything I could have imagined.
Fast forward to 2021 … believe it or not, we all are OK. Our twins are in full all day autism therapy getting such incredible treatment and help. We have a full treatment team of doctors, therapists, specialists, and educators. They are now verbal – hallelujah! My husband is doing well too. After two mild organ rejections and several bouts of pneumonia, he has gotten to a point where he is much more stable. And our oldest has become the most responsible, caring, empathetic and hard-working 18 year old that I know. He has decided to to pursue a career in the medical field and has begun his first year of college.
