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Writer's pictureSarah Lango

The Day That Changed My Life: Confession of a Special Needs Mom

Updated: Dec 3, 2018


Special Needs Parenting. Parenting a medically fragile child. Mourning. The day that changed my life. Finding Joy on hard anniversaries.

Anniversaries are a funny thing.


This date has been on my radar for a while. I’ve been anxiously awaiting the morning when my alarm clock would sound and my phone would read April 13th. 


An ordinary date to most.


Still nothing could prepare me for the emotions of this day. The way in which a simple date seemingly takes you back. 

The eaery manner in which your life almost seems divided. Before and after.


You see, this anniversary is not one we celebrate. 

Special Needs Parenting. Parenting a medically fragile child. Mourning. The day that changed my life. Finding Joy on hard anniversaries. How to remember without being wrecked.


Today is the 2nd anniversary of my daughters first seizure. 

The day I walked in to find my perfectly healthy 3 month old, stiff and convulsing, and unresponsive.

The day in which our hearts were shaken and our lives were changed.

On this day two years ago we unknowingly embarked upon a journey that we wish we never had. 

Wide eyed and unaware of all the hard that would greet us over the next months and years. 


This date was the beginning of the havoc reeked upon our home, our family, our hearts and of course our little girl. The chaos that we never imagined. The desperation one can never prepare for. 


But again this day is here.

And next year it will arrive again.

If I'm honest, I’m not sure what to do with this date.


It’s one of several that seem to be seared upon my soul. Re-living each wretched moment. Questioning every word spoken and every decision made. 


Being the caretaker of a sick kid can be extremely difficult.

Maybe you have a similar date? One when a diagnosis was given. One when a symptom you were not expecting knocked you off your feet. One when the words of a physician or even a friend left your heart wrecked for days as you untangled the reality of this demon you face.



Special Needs Parenting. Parenting a medically fragile child. Mourning. The day that changed my life. Finding Joy on hard anniversaries.

A day when life changed.


I want to pretend like this day holds little weight, BUT I think instead I will sit under the weightiness.


I will remember that this journey though extraordinarily hard, is not in vain.


Because through all the days of complicated change, God has changed my heart in some of the best ways possible.


And, through all the moments of unimaginable hurt, He has grown me all the more compassionate.


And, the intense seasons of chaos have allowed gratitude to seep into our ordinary in ways that may have never happened otherwise.


And, though that day two years ago, and so many other horrendous days following wrecked me to my very core, I am not left as wreckage.


Because each time, each moment, each broken heart, He slowly but surely, as I allow, places my broken pieces back together, redeeming the wreckage in a way I cannot yet fully see.


So, today I will mourn again. I will recollect all the pain. I will allow the sorrow of this journey to pour down my face once more. I will let go of the life I thought would be. AND THEN, maybe I will celebrate, for through it all God is at work. Yes, God IS at work.


Are you the parent of a child suffering from illness or disability? Can you relate to this post in some way?

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Special Needs Parenting. Parenting a medically fragile child. Mourning. The day that changed my life. Finding Joy on hard anniversaries.


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2 comentarios


glausj
26 jun 2018

Yes, can totally relate. The day my perfect daughter had a stroke at just 4 months old. Our life turned upside down. Thank you for sharing your story x

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brosehelen
13 abr 2018

I remember my 5mos old boy when he had his very first seizure and followed by so many more after that. Every time he's seizing it breaks my heart that I just wanna die, he still gets seizures but just the minor ones.5 kinds of medication twice a day helps a lot. he is 3yrs old now he was diagnosed with Dravet syndrome Feb 14, 2017.

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