The transition from living what was considered a "normal" life to our new normal was …. Different. Looking back to before Grayson's diagnosis, there were so many signs he had hemophilia. Without getting into all the details and multiple stories, this should have been discovered way earlier.
Grayson had issues crawling, walking, and playing at times, which did not stop him from playing like a normal toddler BOY. He jumped, ran, and played just as hard as any other boy... sometimes with painful consequences.
It turns out my husband and I always had concerns about his bruising and periodic joint issues in the back of our minds. Nothing was ever a concern when it was mentioned to our previous pediatrician. Even still, we were very cautious with him - parent's intuition. Some thought us to be overbearing and overprotective. It turns out our instincts were on point.
As parents, the final diagnosis was very hard to swallow. There is no family history of hemophilia, which made this even more puzzling for us. Once Grayson was diagnosed with severe hemophilia b, the roller coaster ride seemed to fly way too fast.
Shortly after the diagnosis, we were in the hospital watching our son go back for surgery to have a port placed. The port would allow us to give his weekly infusions a little easier (the veins in his arms and hands are too small for such frequent injections). Imagine just learning your firstborn has a rare bleeding disorder, and you have to send him into SURGERY. Talk about gut-wrenching.
Well fast forward to the present time. Grayson is much more active. It makes me tired just watching him sometimes. He started t-ball. He goes fishing constantly (His nickname is The Legend-Check out that story on our website https://specialtyteesandco.com/pages/story-of-the-legend ). He feels better, walks better. He still has some bad days and has joint bleeds every now and then. This is just the new normal, and we have learned to roll with the flow.
The significant difference in our life before hemophilia and life now is the knowledge of this disease. We knew nothing about hemophilia before all of this. We now know much about it (and are still learning), which is good but also scary.
Knowing now what has been wrong all along, having proper treatment and amazing doctors on our team, we can make more informed decisions about Grayson's well being. We will always try to let him do things any boy without a bleeding disorder would do (no matter how bad we want to put him in a bubble). We still have to be cautious as he does have a pretty severe disease. BUT we are learning more and more every day.
I can not brag about Grayson enough! He has been just a trooper through this whole transition. Not once has he asked for his port to come out (one of my biggest fears after his surgery!). While he does not enjoy getting his treatments every week, he knows it has to be done, and ALWAYS says he feels so much better afterward. He has a very good understanding that he has a disorder that not many people have. He knows his limitations (even though he tries to push them to the fullest at times).
I am very proud of him, and he keeps me going at times. I mean, how could you not keep going when your son with severe hemophilia doesn't stop?! We have been so blessed with this little boy, and I can not wait to see what he will achieve.