Interior design is a passion of mine because of how it’s impacted our lives and the lives of the families we work with. When I get messages from clients when we’ve finished a space that say, “We are spending so much more time as a family. We snuggle up together in our bed and watch movies together,” and “We love our house more than we ever thought possible,” my heart LIGHTS up.
It’s all about the connection we make with those we love in our safest place. Many times our homes don’t necessarily support our lifestyle in the most beautiful, functional way, and even more frequently, we don’t have time to think about it.
As a parent of a special needs child, this is even more compounded. Our oldest daughter has a rare genetic degenerative disease. As all parents of special needs children know, caring for our special needs child is frequently a full-time job, and if you add to that additional children, IEPs, appointments with specialists, behavioral challenges, work, marriage…home gets pushed to the bottom of the pile quickly out of sheer survival.
Home is the easiest, safest, most accommodating place to be with our daughter. Going out into the world presents all sorts of challenges for all special needs parents as we navigate dietary needs, diaper changes (those little fold down tables in a public restroom don’t work so well for a 75 lb 12-yr-old, amiright?), stroller accessibility, not to mention the emotional impact of questions, stares, comments and assumptions of strangers. I’m getting sweaty even just thinking about getting our kiddo in and out of the car.
We have made a very intentional effort to make our home as accessible and safe for Anni as possible, working around medical equipment and being aware of what it takes to physically care for her while still fitting in with our personal tastes and style.
This is a beautiful balance of function and beauty, caring for her while we care for ourselves. We want our home to be a place where we can entertain friends instead of going out, hang out as a family, and make sure we get the physical and emotional rest we need to care for her the best we can.
I want to share my story with you.
People have asked me over the years how and when we got Anni’s diagnosis.
“Did you know that something was wrong?” is a question that I have heard a lot.
Truth is, we didn’t have a clue that something was wrong for the first 3 years of her little life.
She was behind in speech, but not so much that I considered that something might just not be quite right. Right before Emma was born, Anni started having terrible sleep issues. When Emma came along and my mom was in town to help out, she shared a room with Anni and told us that she thought Anni might have something going on. She gasped and choked a lot while she was sleeping. So, we scheduled an appointment with an ENT at a children’s clinic. She took one look at her and heard how she was breathing and said we should schedule an appointment to get her tonsils and adenoids removed. Taking it all in stride, we did just that. Fresh out of surgery we were leaning over her bed, and the ENT who did her surgery asked if Anni had any developmental issues. We told her that she was behind in speech, but that was about it. She told us that Anni looked like she had some facial characteristics that indicated there may be something going on that we were unaware of.
I was surprised and to be honest, irritated and a bit indignant. Why would anyone think that my beautiful daughter had something wrong with her just based on what she looked like? We may have just brushed this incident off, but we had two other random encounters with people who thought that Anni may have some developmental issues.
We chatted with our pediatrician and she said that we could easily do genetic testing to rule anything out. There had been discussion before about doing genetic testing because Anni had been off the charts tall for her age. We thought that would be a good route to go, so we scheduled an appointment with a geneticist. He physically examined Anni, asked lots of great questions, and decided to send us along to endocrinology to check hormonal levels. He didn’t think she had any characteristics of gigantism and didn’t see anything else that was really concerning to him. Before we went to endocrinology though, he wanted to do a urine screening, just to make sure.
We did the test, then forgot about it, certain that it would come back negative. They called us later and said the screening came back positive, but it was such a sensitive test that it may be nothing at all. A blood test would rule anything out.
It was November 14, 2011. A Monday. I got a call from the geneticist’s office. Her blood test came back showing that Anni had a rare disease. She told me briefly what it was called, and that it wasn’t a good diagnosis. She transferred me over to scheduling to make an appointment for us to come out to see them to learn more. When they didn’t answer, she got back on the phone with me. I asked her to spell out what the name of the disease was, and she warned me against looking on the internet after we got off the phone. I told her that was exactly what I was planning on doing. I guess she figured that whatever I would read about on the internet would scare the crud out of me and that she would rather it came from her. I don’t remember much of what she said, but I do remember asking her what the life expectancy was. “The only other child we’ve seen with this disease passed when she was six,” she said hesitantly.
“Could we come out tonight to talk about it with you?” I asked after I finally found my voice. She said they’d keep the office open until we arrived. We had an hour and a half drive ahead of us.
I had no clue what to even think. How could I have dreamed that our daughter would have such a serious, life-shortening disease? I could not believe that it was possible that my three-year-old had already lived half of her life.
When I got off the phone with her, I just sobbed and prayed. Emma (6 months old) was taking a nap, and Anni was at pre-school. I called Ryan at work and somehow related to him what I had learned. He left work and came right home. Walking into her school felt like a very bizarre dream. When I saw her in her classroom, I felt like I was seeing her for the first time. I hugged her, barely holding back tears, and managed a smile to her teachers. All I really wanted to do was collapse on the floor and hold Anni as tightly as I could, letting the tears fall on her little blond head and kissing her again and again and again.
As we drove out to Portland, we discussed what little we knew, cried a lot, prayed a lot, kept staring at her sweet face. When we got onto the main highway, right in front of us was the brightest, most clear rainbow I have ever seen. Right next to it was a second rainbow, very dim, almost unnoticeable. In that moment, this metaphor painted in the sky was a sweet and timely gift: Anni’s life is like the second rainbow. It’s a dim picture of what life is going to be like in heaven. It’s like her body. Not anywhere close to the perfection and radiance of a new, fully functioning body in heaven. I felt in my bones that whatever happens, she’s going to be okay.
We arrived at the hospital and went into the room to talk about what this diagnosis meant for Anni. We asked lots of questions. We did learn that the young girl that the genetic counselor had referred to earlier (who died at 6) died so young because of complications from an experimental treatment and that the average life expectancy is mid-teens.
That night we had to tell an aunt, uncle, and two sets of grandparents the news. I won’t forget the feeling of having my insides twisted and compressed like they were in a clamp that just kept tightening. The days and weeks that followed are a blur, telling people how our lives had changed and incidentally theirs too. I have kept all the cards that people sent. It’s a tangible reminder of how much love we live in.
The months and years that have passed since the first searing slice of a wound that caused unimaginable pain and sorrow have not been easy. In those first months, there were numerous nights lying awake wondering at the future, grieved by what it’s going to hold. As the years have gone by, the grief has morphed and changed as our experience has shown us that life with our daughter is an incredible gift, despite the unknowns, the challenges, and difficulties. Anni has been the single greatest influence on my life, and I am proud and so so lucky to be her mom.