Living in our rare disease world has brought us so many emotions and feelings. Some stages last longer than others. From the beginning to current, you can see how these feelings have changed for us on our journey with Jordan’s Syndrome.
Fear- my child is missing milestones. We’re afraid something might not be right.
Blame- are we, as parents, doing something wrong? Did I miss a prenatal vitamin during pregnancy? Are we not getting her enough nutrition? It must be because I can’t breastfeed her. She won’t suck properly, I must not know what I’m doing.
Desperate- prior to diagnosis we were so desperate for answers. We spent so much time searching for answers.
Discouragement- we are deep into seeing specialists. No one is able to help us. No one can get us answers. We don’t think we will ever have answers.
Isolation- we are out on this island alone. No one understands us, our needs, our challenges.
Excluded - we don’t feel part of the parenthood tribe. We aren’t invited to social experiences because others are aware of the differences which are becoming more obvious. No one wants to share their own child’s milestones, they think our feelings will be hurt.
Scared- we got the phone call from genetics. There is a mutation that is thought to be pathogenic. We are the 40th in the world. This is scary.
Angry- how could this have happened to us? We love each other. We wanted a child. We went to all of our OB check ups. Everything was fine.
Validated- we knew we couldn’t ever stop searching for an answer, even though it was normal for people to tell us “she’ll get there.”
Welcomed- we connected with our global family after diagnosis. Wow, it’s great to talk with others who seem to understand exactly everything we just said.
Novice- there is so much to learn. We know nothing about this. We have a million questions.
Hopeful- there is a research team!!
Appreciation- for all the simple tasks we take for granted, like walking and talking. Appreciation for health care workers, researchers, teachers and therapists.
Expert- soon we are educating others.
Mentors- soon we feel comfortable supporting and encouraging new members of the group.
Thankful- to be part of this great group of human beings and making new friendships.
Proud- to contribute to the research. To share our story and advocate. To watch our rare princess thrive.