The In Between

 

 

A few weeks ago, our laundry room flooded.  The floor needed to be ripped out, and well, it is a process.

So, I began taking our laundry to the laundry mat once or twice a week.

At first, I was irritated with the loading and unloading of the baskets.  It seems that any time I needed to take the multiple loads of laundry to be cleaned, a child would undoubtedly need their bedding washed as well.  And the amount of laundry continued to multiply. 

The good news is, doing all the laundry at the same time gets it all done in one swoop.  But it still takes time.

And then, I began to enjoy that time.  Those hours were inviting.

I found myself alone in the laundry mat waiting for the clothes to finish washing so I could transfer them.  This is when I found time to read, catch up on emails, or just sit in the quiet.

While waiting for the clothes to finish one cycle and move on to the next, I found myself in the in between.  Not just the in between of the washer and the dryer, but the in between of life.

 

This week I received a call regarding my daughter’s upcoming MRI.  My instinct told me that the MRI was scheduled rather quickly.  We were only told a week ago she would need this MRI for something that did not appear very worrisome.  I followed that instinct, and I called the doctor’s office that requested the tesI to see just what they were hoping to find or, rather, rule out.

An orbital tumor

My three-year-old.

My precious baby girl.

Our official “we are doing with babies” baby.

She has medical disabilities already, and this fiery daughter of mine has overcome so many obstacles in her short life:

She was born very early at 23 weeks.

She has a trach that she depends on to breathe (although we are hoping to lose that accessory soon). 

She has a feeding tube for nutrition as we are still working on eating.

She has Adrenal Insufficiency that requires daily steroids just so her tiny body can keep up.

She has been in the hospital more times than I can count.

So now, we must worry about a tumor?

It does not seem fair.

Although, life rarely is. 

The MRI is scheduled for next week. 

This week, I find myself in the in between- the time between transferring my worry from one cycle to the next.

It is during times like this that I find it difficult to move, to concentrate, to focus on anything but the big bad thing looming overhead.

So I transfer the laundry.

As I stood quietly against the tables in the quiet laundry mat that are meant for folding, listening to the whirring of the machines and lost in my own thoughts, I realized that this is where my faith is tested.

The in between.

Do I worry?  Or do I welcome the unknown and allow God to take me into His arms for rest?

Do I google? Go down the rabbit hole of all things orbital tumor and drive myself to the brink of shutdown?  Or do I simply give my worries over to Him and know that He is faithful?

When things are good or bad, it is easy to cast all our cares.  We are well versed in praising God for the good things and praying to God during the bad.

But the in between

It is possible to live dreading a dangerous storm even while the sun is shining.    It is possible to plan for the worst while praying desperately for the best.

The in between, where fear and love co-exist

Where anxiety and peace share their story

This is where I will live for now.

When I do not know if the outcome will be great or grave, it is difficult for me to know what to do.

 So, I simply pray.  I pray for the next step. 

I stand in the in between waiting to transfer the clothes and my worries.

And I fold the laundry.

 

 

To the mother of my son’s best friend:

 

Thank you.

When my son was little, I prayed for him to have a friend.  His medical needs were limiting his ability to walk, talk, and play, but I so dearly wanted him to experience the love of a friend.

I dreamt of lego parties and muddy shoes.

I longed for sleep overs and slices of pizza.

As we entered Kindergarten, I looked on the roster and tried to depict what children might be his friend.  But choosing friends, even when you have disabilities, comes naturally.

And so, years of friendship formed within the walls of our small school.  Though he could not talk, my son would light up at the sound of your child’s name.  He would giggle and squirm, all signs of happiness in our world. 

Pictures were taken.  Gifts were given.  Memories were made.

And my momma heart melted with every single one.

Maybe this feels awkward being thanked for something that appears small.  But, dear friend, please know, in our world your child moved mountains.

They created a language just between them.

They shared smiles and secrets.

Your child made a choice to include my son. 

They held his hand. 

They spoke to him naturally and with purpose. 

They picked him for partners during PE, knowing his participation was limited.

 

At the end of his life, when nothing else mattered, those friendships stuck with me.  They helped me realize that his life, though short, had been so full of love and laughter.  His life had been meaningful.  He had been given the gift of friendship so pure and natural.

Now, among the pictures and memories that hang on my wall, I cherish a picture of my son with your child.  It reminds me daily of the innocence that exists in childhood friendships and the love that was given so freely to my boy.

So, friend, thank you.  Thank you for allowing these friendships to grow.

From one momma heart to another, those memories will never be forgotten.

Hope

 

Lately I have been thinking a lot about hope.

The word is in the songs we sing.  It is in the words people use to encourage us.

Hope was once a word I used to express expectations for my children.

I hope Autumn finds her passion.  I hope Fischer always smiles.  I hope River goes to school.

Now, hope has a new meaning.

Fischer has continued to decline over the past two years.  Some losses are evident such as the lack of head control or the decrease in laughs.  Some take a little time to notice such as the realization that it has been a while since the last time Fischer really belly laughed or went a day without pain. 

Hope is a funny thing.

Before, my hopes for my children revolved around what I wanted them to accomplish.

I hope Autumn falls in love.  I hope Fischer is able to communicate with us.  I hope River never stops showing her emotion through her ever changing facial expressions.   I hope they all have the opportunity to play on a sports team.

Now, my hopes are different.  They aren't tangible outcomes.

I hope Fischer wakes up every morning and goes to sleep every night knowing how much we love him.
I hope he continues to always smile when Scooby Doo is on.
I hope my girls never feel forgotten in a world that is not always kind to them.
I hope I never fail them as a mother.

And I sit in a state of limbo.  I want to hope for the future.  I want to daydream about my children's destinies.
And yet, I am scared of what lays waiting for us.

 

Anticipatory grief is real.  It is also terrifying.

I am not simply grieving for his life, but I am grieving for the child I once had and all the dreams that felt so real just yesterday, the secret dreams I kept hidden in a small space in my heart.

I am grieving for little league and flag football.

I am grieving school projects and first crushes.

I am grieving for first dances and first heartbreaks.

I am also grieving for his smile and his laugh.

My once happy boy is not as happy as of late. 

 

Today we went back to remote learning for Fischer due to his increase in illness and overall decline.  I cannot be certain that he will ever be healthy enough for him to go back to school in person. 

And so I grieve.

 

Fischer’s future has always been outlined in reality.  We understand the ramifications of his underdeveloped brain.  We understand that as he gets older and bigger, many things will become much harder for him.
Yet, we never viewed our lives or his in that manner.

We are children of a loving God.  We know who the ultimate healer is.  We have put our hope in knowing that everything works out for our best.

Though those things still hold true to our hearts, we have had to face some questions that we were naively not ready for.

And suddenly every single day seems so precious.

And all we have to hold on to is hope.

Our lives have become about quality over quantity.

It is not about how much time we have left but what we do with that time that matters. 

Dear Momma,

 I see you.

I see the smile you plaster on your face when behind the scenes you are weeping. 

I see the time and effort you put into each and every day while you are in much need of rest. 

I see the worry and anxiety build behind your eyes while you pretend you have it all under control. I see you. 

We are the same. 

We are the mothers to medically fragile children, and the world is often not kind to us. While other parents remark about their child’s milestones and first words, we accept that inchstones are just as important, and we celebrate those tiny moments: 

The moment when your child held your gaze for even a few seconds because that is understanding 

The moment your child cried when you turned on the wrong cartoon, because that is a form of communication 

The moment your child crossed their hands to midline because that is progress 

All of those moments are celebratory, and they deserve billboards and banners and facebook posts.

While other mothers show off their child’s report card full of As and Bs, we read through the progress notes regarding how child being able to maintain a grasp for ten seconds. 

Our worlds are not the same. 

And we often feel alone and forgotten. 

But, sweet momma, you are not forgotten. You are loved. You are cared for. You are prayed over. 

When you come into the world of special needs parenting, you are often given the poem “Welcome to Holland.” It illustrates the beauty of navigating an unknown place and finding the hidden world full of wonder. It is beautifully written. It is remarkable. It is needed. 

But it is also a “Welcome to Holland” moment every single day. In the world of special needs parenting, no two days look alike. One day may be full of meeting small inchstone (we use inchstones as a measuring stick in our home, because milestones do not come so easily). The next you may be simply trying to survive on little caffeine and even less sleep. 

So, we Welcome to Holland ourselves every day. 

Today, my son held his head up. He is eight years old. But some days, as his body grows weaker, he cannot hold his head up. So today, we celebrate neck strength. Tomorrow maybe he will grasp an object or maintain eye gaze for several seconds. Those are tomorrow’s wonders, and they will be celebrated tomorrow. 

Exhausted momma, I understand you. I see how tired you are. Yes, you are tired because so often you get little sleep, and the sleep you do get is full of unconscious thoughts about doctor appointments, therapies, and referrals. But, you are also tired because your entire being goes in to doing the very best you can for your littles every moment of every day. It is exhausting, but your hard work does not go unnoticed. I see you. 

Frustrated momma, I feel you. I know how difficult it is when professionals do not understand a diagnosis or lack of growth from a goal. I know how hard it is to hear how your child fails in comparison to checklists that are designed for typically developing children. I know how hard you try to not allow those opinions to cloud your perspective, and yet, you still feel a tinge of guilt for being jealous of other parents. 

Sad momma, I get you. I know how lonely this world is. I know that even when you are brimming with joy over the smallest of growth, you are grieving for the loss of the dreams you once had for your child. I know you try your absolute best to only let your children see you smile and tell them over and over again how proud you are of them while secretly wishing you had done one more therapy session, made one more phone call, worked harder on getting one more referral to go through. 

But, sweet momma, you are enough. You have always been enough, and you will continue to be enough. You are made for this. I do not, nor have I ever, believed that God only gives special needs children to special people. We are not special. We are not somehow different or better than any other parent. And the only goal for all of us is to do our best and love our children. However, I do believe that parents of special needs children are equipped with more patience, more understanding, and more compassion- not because we deserve it but because we notice how little those attributes are provided for our children, so we strive that much harder to accommodate for others.

And today I give you permission to give yourself some grace. You are doing it all, but a car cannot run on an empty tank. 

Loved momma, take a nap. Binge a show. Paint your nails. Read that book you bought that you have been wanting to pick up for months. Bake those cookies full of calories because you deserve them. Tomorrow will bring so many more things for us to worry and fret about. 

But today, dear momma, you are enough.