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| My Strong, Brave Little Man |
Hard to believe that it has been this long, but today marks four years since Brayden had his first seizure, and lost consciousness due to IBHS. It doesn't matter how much time has passed, the events of that day, holding his lifeless little body in my arms, will forever be ingrained in my memory. The fear, the agony and the pain of thinking I might lose my son for the second time in his short 14 months of life haunts me. Despite the time that has passed, and the improvements in his condition, every time he suffers a spell, those emotions feel just as raw. However, I have learned a few things in these 4 years, and have improved in some areas. Here's a few...
"Some times the people around you won't understand your journey. They don't need to, it's not for them" ~Unknown
I'm sure some people are tired of hearing about it, some may even feel like I should "get over it" because "he's fine". I try to forgive their ignorance. They have not known what I have. Felt the emotions that I have. Watched helplessly as some one they care about, so much more than they could ever care about themselves, suffers. I'm not going to lie, it hurts me, but I know, I can't let it consume me. In some ways I appreciate their ignorance, I wish I never had to know these things, or feel these emotions, and I would never wish this on anyone.
"It Doesn't Get Easier, you just get STRONGER" ~www.dailyquotes.com
Over the years, I have talked to so many parents, new to IBHS. Like me, all they want to hear, is that it gets easier. I always tried to avoid that phrase, its deceiving. When I caught myself saying those words, I always try to elaborate. I would tell them that while it never gets easier to watch this happen to your child, it gets easier for you to control your emotions until you have gotten your child through the spell, and recovery. Just the other day I found this quote on Pintrest, and it really hit home. These are the perfect words to describe how you change as you care for your child. It doesn't get easier, but you do get stronger in so many ways. Your will becomes stronger as you find ways to keep moving forward, to suppress your emotions and feelings until the quiet of the night or a hot shower, when you can let them flow freely. Your voice becomes stronger as you become an advocate for your child. Your knowledge becomes stronger, as you research more than most doctors. Your ability to support others in rough times becomes stronger, because you have known rough times. The strength of a parent caring for a sick child, is superhuman, and not to ever be underestimated.
"Just keep swimming"~ Dory, Finding Nemo
Special thanks to Dory from Finding Nemo for this brilliant quote!! I repeat this to myself often when Brayden goes through rough times, and I am heartbroken by this condition still being present at 5 yrs old. This is not permanent. Following each rough patch, we have good patches too, its just a matter of getting through the rough times. They won't last forever, even if the condition does. Reminding myself of this fact, has helped a lot. It keeps me going, when I feel I can't go anymore.
One final note on this IBHSiversary, be patient and be kind. Not just with others, but with yourself. Give yourself time to adjust, allow for mistakes, and don't forget to pamper yourself from time to time, it will refresh you and help you to continue on. Raise awareness. The more you tell your story, the more this condition will become known for what it is. You may not change every mind, but if you change one, that is a success story!!!
Thank you for sharing in or journey!
~Jennifer
