Today is Rare Disease Day. Kind of funny that they scheduled it on Leap Day, a rare day that only happens every four years.
I would love to be one in four.
When you are a rare disease/syndrome you are one in a million. In the case of PACS1 you are 1 in an unknown number. When you are a Pitts/Hopkins kid you are one in 300,000. It doesn’t matter if you are 1 in 10 or 1 in billions, if you have a rare disease/syndrome all you feel is alone.
Because having a rare disease isn’t just having PACS1. A rare disease/syndrome is more than having a label it is having something that affects every aspect of your life.
And your family’s life.
For Bridget it affects her speech, her mobility, her feeding and well everything. In truth it is all Bridget has known. This is who she is and she is quite happy. She has a rare (very rare) syndrome. It just makes her Bridget. No better or worse than any other child.
Not to make this about me, but as a parent of a child who has a rare syndrome it affects every moment of my life and hers.
Having a rare syndrome means instead of choosing a job based on your abilities, you choose it based on your family’s situation. It means friendships that you held dear are now let go because they get tired of making accommodations. It means family members think they get it, but they don’t.
It sounds superficial. I challenge you to look at your child and take away all of the normalcy. Instead see your child in a walker or diapers or glasses or not being able to dress themselves. Now imagine your reaction when a family member says, they had X issue with their child (who is an honor student) and they “outgrew it”. Then bite your tongue, because that fight is one that is not worth your time.
Your marriage is affected. The percentage varies, but it is supposed that almost 80% of parents who have a child with special needs also have a marriage that ends in divorce. I’m not blaming the child. I firmly believe the marriage probably had issues before the child. What I will attest to is that when you have a child with a rare disease the stress on your marriage is 400% more than one with the typical child. My marriage was a lot more secure with just Abby until Bridget came along. Not that Bridget would destroy my marriage. But she definitely affected it. When you do not sleep for years, when you are constantly worried that your child will not live or thrive. When you spend hours fighting insurance companies, doctors and family members that your child needs help. When you spend more time in your child’s therapy appointments, doctors appointments, special education appointments and then implementing all of the above in your home environment you are not spending time on your marriage.
You are not spending time on your partner.
You are not spending time on your other children.
You are not spending time on your family members.
You are not spending time on your friends.
You are not spending time on your career.
You are spending every moment on your time surviving.
That is what being a parent of a child with rare disease is like: spending all your time on surviving.
It affects every aspect of your life and it makes you neglect the other parts of your life.
The goal becomes finding people who “get” you. Who know your struggle and can offer you solace and support.
I’ve been very lucky, through this blog, to find people who “get” me. I used to hibernate with Bridget. Only talking to one or two friends because I didn’t want to seem like a martyr. Or worse, give the wrong image of life with Bridget. In those early days I was so isolated and overwhelmed. I had no idea the power of support.
One of the scariest decisions I made was to turn this blog from anonymous to THIS IS KERRI.
It was also the best decision I ever made. Our family began to better understand our journey. Our friends both near and far have become Bridget’s loudest advocates. In turn, their own children have become advocates for those who are different.
Having a child with a rare disease still affects every aspect of my life. It changes what job opportunities I take. It affects friendships when I cannot be there for my friend as they are for me. It affects my marriage when I am too tired and overwhelmed to be a wife. It affects how I parent two completely different children in two completely different ways.
But the support I have found by sharing our story? That has affected my life in every possible way as well.
In the best way possible.