What do I wish I would have known at the beginning of our patient journey that I know now?
That it will be okay.
But seven years ago when we were at the HTC with our then newborn baby boy waiting on a diagnosis I would’ve never thought that. Then getting the hemophilia confirmation and a three day stay in the NICU…I would’ve said, “no way”. As Jackson got older and my heart jumped to my throat with each new milestone I realized that it IS going to be okay.
We now self-infuse and have been for a while. I’ve met with local and state Congressmen to advocate for hemophilia. I’ve always had a voice but it’s become louder and with specific purpose. If you would have said I would be a mentor to newly diagnosed families I would have said, “You’re crazy”! Or blogging for our hemophilia adventures or serving as a Board Member for our local Chapter?! Say whaa?
This week I sat on a panel discussion for hemophilia with our local chapter and HTC for newly diagnosed families. I was them not that long ago. To sense their fears, concerns and knowing what the road ahead looks like for them but knowing in the end they will ultimately be ok. Their family unit will be stronger and they will be well equipped to speak their mind for their sons who are not yet able to speak. It’s a journey I’ve come full circle in and yet I’m still learning.
So if you are a newly diagnosed family or established family with a bleeding disorder that needs some encouragement…It’ll be okay.