I am a blessed mama, I promise. But, it doesn’t always sound like it when I share bits about my life … here is one example.
As the cashier slid the 4 bottles of clear, unflavored Pedialyte across the scanner, she said, “That’s a lot of Pedialyte, is someone sick?”.
“Uh… not really. I have a daughter with special needs… she has a feeding tube and needs gentle fluids.”
It’s easier to say “special needs” than to say “mitochondrial disease”. A lot of the time I get away with the easy explanation. But, not that day.
“What kind of special needs?”
“Actually… she has a terminal disease, called a mito-chon-dri-al disease.” I pronounce it slowly, since I am used to people saying, “mito-what?!”.
I knew what came next.
Like a robot, I start explaining mito.
At this point, the person’s eyes glaze over and I realize they are only nodding and saying “uh huh, I see” to be polite. I feel my face heating up and I quickly end my little speech.
“Anyway, she has outlived her life expectancy by two years so far.”
They don’t seem to hear that last part and this is usually when they say how sorry they are and how hard it must be for me, etc.
I can’t help it… I can’t let them believe that my life has been ruined by Abigail. I have to say it.
“Actually, we are really blessed by our daughter. She is amazing and we have learned so much from her!”
Once again, the head nodding and the ‘I see’s’ start. They don’t see any blessing in having a terminally ill child at all. I don’t blame them, I guess.
But, this time, I had more explaining to do than I had anticipated… as the questions continued.
“Is she your only child?”
“How many children do you have?”
“I have… well, I have 4, uh.. actually I have 5 kids… but well, one passed away.”
I searched for the right words. This was the first time I had spoken about Elijah to a stranger.
The first time I was asked, “how many children do you have?” since my 5th child was born.
How badly I wished I could just say “5” without having to explain any further.
“Oh no! How did that happen?”
I gave her the short version.
“He was born with failing kidneys and lived just 88 minutes.”
“Poor Mama!” she shook her head in disbelief.
I just smiled a little smile. I could feel the tears stinging the backs of my eyes and I knew my face was beet red.
But, what was going through my head was that I wasn’t a “poor mama” at all.
I am a blessed mama. And, I wish I had had the courage and right words to say all that was in my mind at that moment.
You see, I am a writer, not a speaker. I can not speak well in public or to strangers… or even to family for that matter… especially if I become emotional or the center of attention.
I didn’t say it then. But, I will write it now.
I am the mama of 5 children. Each unique and special in their own way. I have watched my babies suffer like no mother should ever have to (and there are many, many mothers who have had to!).
But, how blessed I am to have been given this life! I know that Jesus, the Savior of my soul… has never left me alone. In fact, I have felt His presence much stronger during the hardest, darkest times. He carries us through the roughest times…
I look back and say “wow! how did I make it through that time without losing my mind??” and then I see Jesus plainly… clearly there in my memory. “Oh yeah, it was Him… He carried me through!”.
What a beautiful gift to be given. These times of proof of God’s existence! I have a God who knows exactly what my husband and I need to grow closer to Him… to have faith like a child… to know that He IS!
Yes, it is hard… yes, I cry tears of sorrow. Yes, I wonder why… yes, I wish things could have been different. That Abigail could have been healthy. That Elijah would have survived. Yes, I am human with a weak flesh.
Yes, there is a place in my mind where I see a little 4-year-old brown-haired girl playing with my white-blond 6, 2, and 1-year-old children… I picture her with glasses and pigtails… I picture her asking lots of questions about “why?”… I picture her and Josiah being the best of friends and the worst of enemies. I picture her talking about Jesus. I picture her being my little helper.
And, Elijah… well, he would have been born this week. So fresh and new. That one-of-a-kind newborn smell still on his fuzzy little head. The sleepy little cuddle bug that just needs mama to be happy. The getting to know him process would be underway… and excitement would fill our home.
Yes, I have those moments where I can’t help but ponder the “what could have been”‘s.
But, my soul is in communion with God like it never could have been if I hadn’t experienced the loss and grief of this world. Would I trade these heavenly gifts for the earthly treasures?
Sometimes I would like to… but in the end, no I wouldn’t. And each one of my children has played an important part in my walk with Jesus… no matter how little time they were in this world.
I am a blessed mama.