Sarah Lango

@gracefilledgrowth | contributor
Sarah Lango is a momma of three, wife, writer, speaker, advocate, caretaker and coffee lover from small-town Missouri. She is the founder of Gracefilled Growth, where she writes about her faith, marriage, motherhood journey and her new experience of being a “sick kids” mom. Her passion is to inspire others to live authentic lives, learning together, and embracing the grace that God so lovingly offers. You can read more of Sarah’s writing at www.gracefilledgrowth.com.
Community Voices

To The Special Needs Mom Who Sits Alone

Previously published here: https://www.gracefilledgrowth.com/blog/to-the-special-needs-mom-who-sits-alone

To the mom who sits alone….

Alone because the world is always moving on without her,

Alone because the chaos is too much,

Alone because no one realizes the truth of her reality…..

To the mom who sits alone…..

Holding a fragile child,

Calming a frustrated toddler,

Telling the kid you love over and over that it will be ok.

To the mom who sits alone…..

During ball games and barbecues,

Birthday Parties and firework displays,

Weddings and outdoor adventures.

To the mom who sits alone….

For a hundred reason, that really all boil down to one….

Because its too hot, or too bright,

Too overwhelming or too exhausting,

Too difficult to maneuver or too stressful to conquer…

BUT really because your child needs you, and that’s all that matters.

So you sit alone, but with them….

You watch ball games from vehicle windows,

And listen to distant conversations and laughter from inside,

You send your family off on outdoor adventures with a smile, but one that aches.

You view the world from hospital rooms,

And the walls of your home become barriers that detain you from the life you once lived.

Barriers for which you wish you had never become accustomed.

To the mom of a special needs child,

Or an autism child,

Or a #SeizureDisorder child,

Or a sensory disorder child……

Perhaps today you sit alone.

BUT, may I remind you that you are NOT.

Not alone in this world.

Not alone in these hard places.

Can we sit alone together?

Asking God to meet us here, where our hearts grow feeble and faint?

Because though I sit alone, I am not alone. And, neither are you.

Sarah Lango

To the Teacher Who Will Be Working With My 'Typical' Child

If you are the parent to a medically fragile child or a child with a disability, you are well aware of the ways in which the extra needs of one child stretches into every area of your life, impacting even the smallest details of your family. Undoubtedly, the life of the typical siblings changes, too. Last year, we had several emergent scenarios that took place throughout the school year due to the health of our youngest child. Because of that, this school year I wrote a letter to the teachers of my typical kiddos, inspired by this letter over at The Mighty.  I wanted to help teachers understand the way in which our every day life can potentially be turned upside down in a single moment. To the teacher of my daughter (the sibling of a child with a disability): We are thrilled that our daughter will have an opportunity to learn in your classroom this year! She is such a great kid and we anticipate watching her thrive as the year goes on. However, I wanted to make you aware of our situation at home, a situation that could, at times, affect her school life as well. Our daughter is the sibling to a medically fragile child. Her younger sister has a severe type of epilepsy called Dravet syndrome. What this means for our family is that at times our ordinary days will quickly turn to emergent chaos. It means there could potentially be nights when mom had planned to help with homework, but she ends up on an ambulance ride instead. It means there could potentially be mornings when mom had intended to make lunches, but a seizure struck before we could make it that far. It means there could be exhausting times when we stumble into school late because we didn’t get home from the emergency room until late the night before. Or evenings when she is abruptly and unexpectedly taken to stay with an aunt or grandparent because mom and dad rushed to the hospital unplanned. Or weeks when mom and dad are out of town for specialist appointments, so the normalcy of life is a bit off kilter. Sometimes she may show up to school extra anxious, or scared or tired. Sometimes you may observe her a bit more on edge, or more sensitive to situations that should not cause tears, but do. We are not making excuses for our child, but we recognize that in trying to fight for one child’s life, the details of another child can potentially fall through the cracks. The emotional strain that comes with her sister’s health issues affects all of us. We are crossing our fingers and hoping that these chaotic days are few and far between, but as our child’s teacher and the adult who will be spending the most time with her throughout this year, we feel it is valuable for you to be aware of our family dynamics. Most of the time, our daughter handles all of this so well, and there is a possibility you might not even notice a difference on the hard days. But, in the circumstance where it is not, we just want you to know, sometimes our days do not go as planned, sometimes our “normal” gets quickly altered, and sometimes we need people to understand that this effects her, too. Thank you for investing in the life of our child this year!