The night that changed my life
by Jake Moore
As many of you know, my niece Mabel was born with a rare neurological disease called batten disease. My sister knew something was not right at a young age with Mabel. She simply was not developing and coming to the stepping stones as most children would. With the help of many doctors, at the age of 2 Mabel was diagnosed with batten disease, and we would not yet know just how much this sweet little girl would change and impact people's lives nation wide. As most know my family has had a lot of tough times. But none of us knew that this would be the toughest and most life changing time of our whole lives. This is a story of my sweet niece's final days through my eyes.
For the longest time I've wanted to write about this. The amount that it impacted my life and still does every day is extreme. So here it goes.
In the time that Mabel was slowly getting worse my sister and her boyfriend at the time rented this beautiful ranch style house on top of a hill right on the outskirts of clinton. And instantly we all knew exactly what room would be that sweet little girl's. It is a beautiful room right as soon as you walk into the door with 2 glass doors that you could see through. My sister loved those doors because she could watch her, pray, thank god, and cry while watching Mabel's gentle body sleep. It fit Mabel perfectly to have that room because she was always the center of attention. There was no other thoughts besides that would be her room.
It did not take long before Mabel's room was laid out perfectly. My sister has always been great with decorating. When you would walk in the bed was on the back wall right in the middle of the room with a night stand on the right side with her bedtime supplies-Diapers and etc. to the right when you would walk in was a blue love seat where believe me when I say, Mabel got a lot of love on. Ramee spent countless hours on that couch with our precious little girl. To the left there was a desk with a computer used for Mabel's nurses and anything else to sit stuff on. And finally there was a rocking chair in the corner of the room right by the window. This room was simply as cozy as could be.
When we knew that Mabel was going downhill we all tried to prepare ourselves for what was to come, because unfortunately, we knew it would come. My family has always been very close with God, and I truly believe that that is what has pushed us through so many hardships in my life. And there was no doubt that Mabel was a gift from God, but I also feel she impacted so many more than just this family of mine. The journey was unforgettable- from the many batten disease conferences we have attended, to the people we have met, all the way up to the people she touched in her too-short of time. We were more than blessed to have this beautiful gift from God.
When the time got near, Ramee wanted us all to be with her, and we were right by her side through everything. Mabel was soon to be ready to meet the Lord and be reunited with her great grandmas, and when I picture it now, I know that my grandma is still, to this day, rocking her and won't let go. Mabel is in good hands and I'm so thankful for that!
The day had come and we knew that Mabel was soon to go to Heaven. We were all at that beautiful house on the hill that day. I remember it like it was yesterday. As the sun started to set on that day and the night time came in, the ones still at the house found ourselves in Mabel's room, packed in there honestly. My dad was in the rocking chair, Ramee and Mabel sat on the love seat, and the rest of us were strung out everywhere on the floor and bed. I (and I'm sure everyone) had no clue how much that night in that little room would teach us. We found ourselves laughing, crying, telling stories, and sometimes there was a silence, but I felt that the silence that was there wasn't a sad silence-it told us that it would all be okay. Jesus was with us that night and we felt it. As the night went on none of us were even considering sleep, we just wanted each other close. Ramee's friend's husband came in and baptized Mabel. We held her, kissed her, and were so thankful for her. And we all still are. Around 3 o'clock my sisters friend arrived from a plane for our sweet little girl; she was loved from all 50 states. I could go on and on of the details from that night.
Before the sun rose on that spring morning, Mabel took her last breath and went to be with the Lord, and I knew she was in good hands. With something that innocent, and gentle, and life changing, how could you not believe? I learned more from those moments than I ever will in this life; the peace, the silence, the comfort-it was so real in that night. And when my sister and I stepped outside that early morning with the sun rising, it was the most pure thing I have ever witnessed. The birds sang, the world was silent, the cool breeze blew by. It was all simply perfect.
I left to get coffee that morning and was finally able to have alone time and cry, (most know I don't show emotions near as much as I should.). I'm not perfect. But my niece was, and she showed me how to be humble. I told the lady at caseys to have the best day she could that morning and walked out. I said that because I had just learned how this life works, and how quickly it can be gone. I learned to take the little things and be so so grateful for them. I learned the life and the man I want to be that day. It most definitely changed me.
As the afternoon arrived we met at the small little cemetery in the country with nothing but wide open fields surrounding it, which couldn't have been a better place for our sweet Mabel. Everything was the most beautiful thing that day. For once in this busy life, time stood still. Family was the only thing that mattered at that very moment. No bills, no work, no stresses, just family.
We laid our girl to rest right next to my Nanny, and it couldn't have been a better spot. With a bronzed angel on top of a bench to sit with our girl. Where later in this life my sister and I would sit and talk, reflect, laugh, and cry. That day I hugged my sister, and told her that she is the best mother that anyone could be. And I truly believe that to this day. There are still tough days for everyone but as a family we make it through those. We're a team, and in this life the only thing that matters is God and family.
And now here it is, another birthday we as a family are celebrating for Mabel, we still enjoy being as close as we were on that very night. As close as we can. I sit here watching these kids running through our field, laughing, playing. They're growing up so fast. The very same friends who were packed into that room on that night laughing and hugging. And still to this day I feel that peace, that quietness, and that comfort. The world is once again standing still in my mind. No work, no bills, no stresses, just family. And those are the moments that are what we live for. Nora and Braden are loved by so many people. More than they will ever meet in this life. Just as Mabel was. I can't help but thank God for that. I'm also thankful because of what Mabel taught me personally. I will not ever take even a day for granted. Because we never know when our hour glass will run out, but I personally am going to live each day like it's my last. So for that, thank you Mabel.
Now I'm not a writer, I've never written anything in my life so bear with me. As I sit here tonight looking back on the journey I felt the need to write about this. Through my eyes, not through anyone else's. the things I learned that night and those few months I hope I can pass on to someone, and make they're life's a bit easier. Just know that your family is always there in times of need, the endless love a family gives can carry you through the hard times, it can even change you. If there's anything I ask from anyone who is still reading this, appreciate the little things in life, take every breath God gives you and thank Him for it. Life can change in the blink of an eye; so laugh a little more, smile, find that true happiness. Take a deep breath as that sun rises over the trees, thank God for those birds chirping. Seek the times where the world right in front of you and the stresses disappear. That is truly what this life is about. Because this world can be cruel. But it can be beautiful also. And that's why I will never lose hope.