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I Refuse to let this Life harden me.

I have cried more tears than I can count.

My head aches.

My heart burns and my thoughts are foggy.

I had to hold my children not affected with SMA and tell them of the devastation and loss we have had in the SMA family and community this past week. Tears welled up in their eyes and their faces went pale as they realized the stark reality of this horrendous disease.

They asked, “did they have type 2”... and the resounding answer was yes… Yes, the children that went to heaven, were similar in age and had the same type of disease that 2 of their sisters have…..😭


I had to tell my daughter that her friend, Madisyn is no longer with us here on earth. I held her shaking body, while she sobbed for the loss of her friend. A friend that was just a few months younger than she. A girl that could understand life the way she saw it and had developed a bond with over the past year through text messaging and picture sharing, but is no longer here to share a conversation and a laugh with. 😭

I had to walk through the reality of knowing, today may be all I have with my babies…. As we truly do not know what tomorrow may bring; As its not always a cold that takes our children… sometimes they go naturally….. 😭

Through it all- The tears fell freely…. At times, my lungs wouldn’t contract the air that I needed. I was stuck at a silent whimper, with my jaw clenched, my neck tensed up, sitting in a collapsed ball- wishing for the aching pain to go away….

But it won’t.

I am riddled with grief for the families not holding their children tonight and for the thought of me not holding mine.

Today was the reality check; that this is my reality.

Not knowing when the last day will be… When things might, “turn for the worse”... or when I will have to say my last goodbyes….

And It broke me….

I am not ready….

I am not ready to lose one of my children…. But how could one ever be “ready” to say good bye to their child?

I am not ready to watch this horrific disease raid their bodies…. But how can one be “ready” to watch their child get weaker day by day?

I am not ready to walk through the dark days with my children who are left behind…. But how can you ever be “ready” to loose a sibling?

It hurts…

Gosh… It. Hurts. So. Bad.

There is so much more to do. So many more days needed to accomplish the hopes and dreams that have been dreamt for all of my children.

There is so, so much more…..

But- all I have is TODAY.

And while I have today, I will hope for tomorrow.

Today was a good reminder that I need to continue to make the make the most with what I have now.

Even if I needed to feel the enormity of our reality… I will rise up when a new day comes, and face it with all the strength the Lord will grant me.

I pray the Lord will continue to grant me his grace to lean into and His strength to carry me through this unknown journey through life.

I can love and kiss my babies and hold them extra tight. I can make them all feel like the most special and loved kids in the world. AND- I can make this life, a life of adventures and surprises.

All while doing all this- I will pray that the good Lord will spare me yet another day, to make the most with what I have…. Just one more day....

And while I stumble about this life- I can only hope the world will see;

God is good, love conquers all,

and the circumstances you have, do not need to be limitations on your life…

As I refuse to be hardened by these circumstances.

I can only hope that their suffering and the suffering of my family, is not in vain…

I believe Denalli and Ryka and all of our children are “on loan” from heaven, but the 2 girls have a ‘rush’ sticker slapped on the side of their soul.

I can only hope that their lives and our journey through this life will leave a lasting on impact lives around the globe….. Then we can look back and know that all these hard days were worth the struggle, the heartache and the pain.

That is it. BE BLESSED~ XOXO~ Natosha Mae

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