This guy is a fighter, he amazes me, he reminds me each day of who I want to be. The smiles, personality, the snuggles.....he is the best snuggler. I held my precious guy the other day, seizure free. I didnt want to let go, I never want to let go! His little arm reached up around my shoulder and he smiled the sweetest grin. I avoid the heartache this disease brings as often as I can, knowing there will be plenty of time for it later. But there are times like this when it is overwhelming, so I held him as tight as I could, never wanting to let go. Trapped in this moment, grateful for it and afraid of losing it. Lost in that, a ding from my ever present iphone and what did I see but a couple of silly stickers messages from a couple amazing Batten moms. I was reminded that I was not alone, and I am truly blessed. Blessed to have this boy as my son, blessed to have God in this journey who cares enough to have friends send silly facebook stickers. Blessed to have the opportunity to stay home with my family each and every day, for a husband who works so I can have that privilege. For children who are each amazing in their own way, for the struggle this journey brings to each of us. Blessed to have a place on this journey, front row, to see how much this little guy does for us each day and to see the impact he has in others lives as well. Our God cares so much for Elijah and our family, weeks when money is so tight we are not sure where it will come from, blessing flow in, like visitors and not just visitor but those with food we can heat up and eat. What a blessing on our already stretched budget! God cares about the little things, hot tubs that make our little man warmer from the inside out, that needed repairs and repairs come in under quote lending to a little less stress for mom and dad. Nurses, friends, family, Facebook friends, encouraging notes, a warm house, a kind gesture. A thoughtful gesture by one friend here on Elijahs page, who is handing out these super cute cards to trick or treaters to help spread awareness. An idea I never would have thought of but just warms our hearts and spirits. This morning a post by a young woman with words of a song, Cause what if your blessings come through rain drops What if Your healing comes through tears What if a thousand sleepless nights are what it takes to know Youre near What if my greatest disappointments or the aching of this life Is the revealing of a greater thirst this world cant satisfy What if trials of this life The rain, the storms, the hardest nights Are your mercies in disguise. Friends they truly are, they truly are. Have a blessed day and enjoy your blessings.
Posted on: Fri, 24 Oct 2014 12:11:43 +0000
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