I have another daughter

I love the book Wonder. It's about a boy named August, who has a gene mutation that caused physical abnormalities in his face, and the various relationship dynamics in his life. There is a line from the viewpoint of Via, the sister, where she says, "August is the Sun. Me and Mom and Dad are planets orbiting the Sun. The rest of our family and friends are asteroids and comets floating around the planets orbiting the Sun." This quote strikes me to the core because I wish so hard it wasn't true. But so much of our life and my work and even this blog revolve around this stupid disease.

Growing up, I knew a girl named Sarah. We ice skated together and went to the same middle and high school. We weren't friends but we knew each other. She was in the popular crowd. She wasn't the prima popular, but the wing woman and side kick. I had known of her for probably 11 years before I knew anything about her family. As a senior, I worked at a videographer's studio and was putting together a photo montage that Sarah's family had ordered for her graduation. Her younger sister has down syndrome. And I never knew it. I probably hadn't paid attention to who was part of her family at school events and she didn't tout it openly.

It makes me think of Via in Wonder when she starts high school and doesn't talk about her brother and even tells her new friend that she's a only child. It makes me think of my other daughter, Morgan. She's an incredibly bright seven year old. Morgan was probably four years old the first time we explained that all the doctors visits were because Kylie's heart is special and it doesn't quite pump the way everyone else's does. When she was a little older, we added that there are arteries in her body that carry blood and the medication Kylie takes keeps those arteries open so her heart doesn't get too tired. And that medication is different than vitamins.

I still remember the day Morgan asked if Kylie was going to die. She and I had been talking and I had to explain to Morgan that Kylie isn't going to get better (unless researchers find a cure in the future). And it was so painful to see that veil of innocence taken away from her. It doesn't help that so much of my Facebook feed has pictures of kids in hospital beds. We were watching a video today of a machine based CPR and her question was, "Will Kylie need CPR?"

I worry too much sometimes at the toll it takes on her. She's often so aware of my exhaustion and I can tell she goes out of her way sometimes to avoid needing things from me. And it's not fair. She didn't choose this; none of us did. But I can't take it away either. I read in a two separate books that during childhood, we develop coping mechanisms for pain, disappointment and trauma and they often become some of our most natural and powerful strengths. I feel like I see glimpses of that when Morgan becomes so self reliant and resourceful. She almost has a innate reaction of not wanting to be instructed on how something should be done. She has melded these traits into another natural talent she possesses.

She has an imagination that is beyond my comprehension. She can create realms and stories and just disappears into a world of her choosing. Even when she was little, she was the kid that would take pieces from each play set and put them together into a new story (which drove my organizational mind crazy) and I'm so glad I let her. And she's an incredible artist. She also reads three grade levels above her. I can't keep up; I just hand her the bag at the library now and say, "Enjoy shopping."

She is generous and kind. She always wants to buy things for people or give her money to her brother or help us pay the bills (we don't let her pay our bills). I want to, and need to, push against the natural gravitational forces that this chronic illness bears downs on me. I want to carve more time out to spend with this amazing girl because as she grows up, she's going to be unstoppable in whatever world she creates.

So cool and over my head

One thing I love about the PHA conference is that they open it to medical professionals and patients and caregivers. It's this giant melting pot of super-knowledge, interaction, and feedback. In one of the dinner sessions, the speaker was talking about something so cool, I barely understand it. So I thought I'd share the microscopic amount I understood in the 30 minute presentation :)

Researchers are studying certain gene mutations on something called bmpr2 (bone morphogenetic protein receptor type II) and it's 33 relations that are located on chromosome 2. They seem to have a big impact on the development of pulmonary hypertension. It took years to find these receptors but now a research team is running four different trials to learn more about the role these receptors play in PH. This could lead to a better, faster, and less invasive way of diagnosing PH as well as a new avenue to explore cures to this awful disease.

Science is so cool! I should have paid more attention in biology....sorry Ms. Myers. 

The conference I attended was through the Pulmonary Hypertension Association (PHA)

The best group of people you never wanted to meet

Community is essential when you are a parent of a child with chronic illness. I was so fortunate when my friend Sophia introduced me to my first PHriend, Monica. Monica encouraged me, hugged me and said "Welcome to the family."

At conference we had a time to get together in support groups. There was a group specifically for Parents of children with Pulmonary Hypertension. My friend Sarah said to the group, "This is the best group of people you never wanted to meet." And it is so true because being a part of that group means that you share with us a huge pain and suffering in your life. But I've also never experienced such a true belonging with a group of strangers than those parents. We live 100s and 1000s of miles apart. An online support group keeps us connected day to day. And conference gives us time together to celebrate, support, and grieve.

In another session, a parent said to use the online group to vent your feelings and get support. Take your emotions there. There is no need to spout that off into your children. It was such a profound yet simple statement. My PH child and other children have no idea the stress and pain I feel so frequently. And they have no business at this age to have to carry a burden like that. They know her heart is special. And that she takes medication to help it work like theirs. And that's why we go to the doctor so much. That's all they need right now. I have a community to help carry of the load of I-can't-keep-it-together-right-now! And for that I am extremely grateful.


The conference I attended was through the Pulmonary Hypertension Association (PHA)