The story of Natilee
Our lives were permanently changed the day that Megan Summer McSween was born. Pregnancy with Megan wasn’t easy and we knew that life after her birth would be just as difficult. But, we had no clue what the journey and toll would be like.
When I was 4 months pregnant, we found out that Megan would be born with Bilateral Hydronephrosis (water in the kidney that obstructs and prevents normal renal functions). Since then, the many surgeries, the pains and the ‘what if’s’ are everyday moments. Every time Megan goes in for another scan or surgery, the anxiety that sets in as you hope this will be her last… Then the sad reality knowing the doctors could find something else.
It’s not easy and it never will be when your child is hurting, rattled and shaking with pain and you can never, ever, EVER do anything to take the pain away or ease her fears; or better yet the fears you as her parent and caretaker has.
All I can do is hold her little hands, as she squeezes mine and asks me to “Make the pain stop”. Or when she looks at her doctor after another scan and she asks “so when is the next surgery?”. At night I often have to rub her lower back to help ease her pain as she tries to sleep. There’s no tea or any other remedy to make her ever feel better, just pain meds. I kiss her forehead every night thinking (better yet hoping) will she have a peaceful, painless sleep tonight? I have done this every night, since the day I gave birth. Yet still, I am blessed to see how far she’s come despite the odds; my tiny itty bitty 5 pound baby girl with the perfect circular head. It’s these little moments, we have to help get us through…the reason she was given the nickname MegaStar, because through it all her personality shines through.
This journey is not one that I can say is easy, it’s not a journey for a person that cannot take the hiccups that Pediatric Kidney Disease might offer. You have to have faith and you have to know that even with that faith, life will happen. When it does you just have to prepare for the next phase in the journey. Despite all we go through, it’s these simple words of Megan Summer “I Have No Worries, Just Keep Blowing Bubbles” that inspires me to keep fighting for her.”