Saying Goodbye to Someone Special

It’s never easy when someone important in your life announces they are moving countries. When my daughter’s respite carer, A, told me she was moving to England for her new job my heart just sank. I’ll be honest, the tears were streaming by the end of our conversation in the living room.

A is an amazing girl. She’s a classroom assistant in Brielle’s school for the deaf and blind, which is how we first met her. She would have loved to stay in the school but sadly a lot of the assistant positions are only temporary contracts with no job security and little rights L

Basically she was told near the start of last school year that she should look for other jobs as there were only a few places come September. How stressful for her…

We had such a great set-up in that she’d walk Brielle home from school on days she was watching her, and usually stop at the park and playground on the way home. Brielle just loved it! We have many fun memories of things A did with her- taking her to the beach, carving and decorating pumpkins at Halloween, taking her on carnival rides, taking her up on double-decker buses much to B’s excitement.

On her last day with us last week, A made a full day out of fun. A bus ride into town, playtime and lunch at Funky Monkeys, amusement ride-ons and finally stuffing a special monkey teddy at Build-a-Bear. It completely floored me- she calls Brielle a little monkey and they made a purple monkey smelling of grapes with a heartbeat you can press and a recording of A’s voice telling Brielle she can hug the monkey whenever she wants to hear her voice- so special!

Honestly feeling a bit lost now at the thought of losing A as a carer – it’s going to be very hard to find someone so caring and attentive to Brielle’s needs. A knows BSL (sign language) and was so amazing at pushing Brielle’s signing and communication. Hoping maybe we can find another person from her school but they’d never replace A.

So thankful for the year and a half we’ve had with her though and I know we’ll be lifelong friends as I know Brielle holds a special place in her heart too.

And so, we Laugh

My home is full of many things. Children. Medical equipment. Noise. Pets. Medications. Medical pump alarms. Syringes…so many syringes. Imagination. Curiosity. Therapists and Social Workers. Teaching. Therapy tools. Meltdowns. Snack times. Tears. Dance parties. Diapers. Messes. Chaos. And laughter. So, so much laughter.

Parenting can be the hardest kind of work for anyone. Being the stay-at-home parent in a houseful of children with complex medical needs and disabilities can add some extra angles of both the hard and the beautiful. I love my life. It’s so much of what I dreamed of for the years before I had it and I feel I am firmly seated in the center of my life calling and passion as a mama to many with multiple diagnoses. Within that calling is a little extra dose of chaos than the average household, some extra hardships, and lot of extra wonderful.

Just like any other family, we have the best kinds of days, and we have days that are just plain hard. Some days, we cry, and we cry a lot. But sometimes, that doesn’t seem to be enough.

And so, we laugh.

One child has been up the entire night, two more children awake due to a feeding pump malfunction, and as I hear yet another child start to wail down the hall, I just laugh.

When we have been in the hospital for weeks with one child while juggling about a million therapy and medical appointments for the other children and we squint out eyes and look for the village that is supposed to come around those raising a child (or 7), we laugh.

We laugh when we try to make a trip to the library and can almost hear “Wrecking Ball” blaring around us as a personal family theme song among the stares and whispers.

When everything seems to be alarming, spilling, pooping, vomiting, and crying, my husband and I look at one another and…we laugh.

When someone says something so incredibly ignorant about one of our children, we confront, advocate, and angry cry. And then later, we laugh because it’s just too crazy that people say what they do.

We laugh because our life is so over the top it doesn’t seem like it can be real some days.

We laugh because we have run out of tears.

We laugh because our hearts are light as we behold miracles.

We laugh because laughing reminds us that we are in this together, even if the rest of the world feels so far away.

We laugh because we know how much we love this crazy life we live.

We laugh because as we look in the eyes of the child covered in bodily fluids yet again or into the eyes of a little one waiting for our response after they have finally calmed down from a meltdown, we know they look to us to speak to their souls about the little things being the big things.

We laugh because we are cynical.

We laugh because we can’t contain our joy.

We laugh because we are lonely.

We laugh because we can’t contain our sorrow.

We laugh because life is beautiful.

We laugh because we are so angry, we don’t know what else to do.

We laugh because it is how we connect, refuel, and how we remember we can keep going.

We laugh because we are exhausted and delirious.

We laugh out of nervousness because we aren’t quite sure how we fit into the circles around us.

We laugh because if we didn’t, we would lose sight of the things that really matter.

We laugh because there is no where we would rather be, and the contentment runs deep.

Laughter is a curious thing that often seems counter-intuitive. I believe it is one of the greatest gifts God has given us, whether laughter fits the situation or not. Laughter truly is the greatest medicine and with it flowing so freely within my wild and wonderful home, I know we are right where we are supposed to be.

Find something to laugh about today, friend. Make those around you wonder if you have lost your mind. As you take yourself and the madness and greatness of life around you a little less seriously, you might just find that you have found your mind in the midst of it all.

It’s Not Easier…But It Is Better

The diagnosis. The plans. The equipment. The routines. The compromises. Everything that comes along with your very special, neurodiverse child adds a degree of difficulty. Am I wrong for saying that? Bear with me. I know first hand that this life is more difficult, but I also know that it’s better.

From the moment you lay eyes on your child, you know you’re willing to sacrifice anything and everything of yourself for them. That is true of ALL our children, to be sure. And with our special needs kids, there is a twinge of knowledge, even from the very beginning of their lives, that they will need more, require more sacrifice from us, parents and caregivers.

I’m here to tell you, that is a wonderful blessing!

Some of us will never see our former plans come to fruition, whether that means with a career, travel, starting a business, solving a global issue, whatever it is. And that’s ok. In fact, it’s better than ok; it’s both necessary and inspiring.

Do you know what this world needs more of? People who are willing to sacrifice their own needs for those of others. And when you’ve already gotten a taste of this mindset in an immediate way, you begin to see how you can convey it on a larger scale.

Every time you cancel a plan or reroute a decision to accommodate our most fragile and complex human beings – our kids – you are becoming more empathetic, more selfless, and more compassionate. These are cherished gifts we should all seek to practice being thankful for!

In the past couple of years, there has been a social movement to encourage more “kindness” in the world. We’ve all been encouraged to practice “random acts of kindness” toward strangers. That is a good place to start with practicing sacrifice, but we can go further. What if we practice intentional acts of sacrifice? If we intentionally look for opportunities to be sacrificial, we will find them.

We can commit to making long-term connections with other neurodiverse families. We can gently educate neurotypical acquaintances on inclusion. We can encourage local businesses to make small changes that increase accessibility. When we put our own comfort on the line initially, which can be stressful and scary, we will become more comfortable with doing so.

That is not an easy way to live, but it is better, more rewarding, and very much loving to our kids.

I’m Sorry

“I’m sorry” is one of the most popular phrases uttered to families touched by disability. These words generally come from those who do not understand, cannot relate, or simply don’t know what else to say.

“Your child has a disability? “Oh, I’m sorry.”

“You have more than one child with disabilities? I am SO sorry.”

“Your child is having another surgery? Sorry!”

“Your child cannot speak? Cannot walk? Looks different that some children? Doesn’t meet milestones in the same way others sometimes do? I am so, so, so so SORRY.”

Often, these words are spoken by kind, well-intended people who truly have compassion. While their words can rub caregivers and parents like me the wrong way, I understand that they are not meant to devalue my children or the life we live, they are simply trying to be in touch with what we may be experiencing or could feel we are unfairly subjected to. I understand that perspective, I do.

However, there is another category of those whom the “I’m Sorry” rivers run out of. There are people who do not value my children, who think my children’s lives—their very existences—are unfortunate events that others must tsk their tongues and heave pity in the direction of. As I’ve tried to have conversations with these people and allow them to get to know my unique family and my wonderful children who happen to have disabilities, it seems clear those people do not want that. They would rather stand on the sidelines, shake their heads, and feel sorry for us. That is profoundly and deeply sad to me. I cannot help but think of all these dear people miss out on as they stand by this approach to something they can’t quite understand. So, I in return, say:

Well…I’m not sorry. At least not sorry for me. I wouldn’t trade the life I live or the children I love for the entire world served to me on a rose gold platter (because I like rose gold better than silver).

But I suppose *I* am sorry, too.

Really sorry.

I’m so sorry, in fact, that it makes my heart ache.

I’m sorry for YOU.

I’m sorry you miss out on the rich relationship you could have with my children because you refuse to see them as worthy.

I’m sorry for the laughter you miss out on by choosing to not associate with my child who is the kind of jokesters.

I’m sorry for the snuggles you miss out on because you see my precious baby as untouchable.

I’m sorry you are so caught up in your own comfort that you miss opportunities to learn and expand the diversity of your experiences.

I’m sorry that you have such skewed ideas of achievement that you don’t get to share in the purest kind of rejoicing and epic parties we throw over accomplishments big and small.

I’m sorry that you spend so much time being curious about my children’s medical conditions that you miss out on THEM.

I’m sorry you miss out on the blessing of leaning in close and stepping into the beauty unfamiliar to you.

I’m sorry that you choose to keep your bubble so small and so impenetrable.

I’m sorry you don’t experience the beauty of deepest grieving because you choose not to love vastly enough to produce that kind of grief.

I’m sorry *you* feel sorry for *us.*

I’m sorry you see inconvenience instead of our joy in taking it slow, exhaustion instead of the miracles that unfold in the midnight hours we are awake for, brokenness instead of the world’s most pure, raw, captivating kinds of beauty.

I’m so sorry that for now, my feeling sorry for you is not something you can understand.

But I have hope and faith that someday, you will truly see beyond your veil of pity. One day, may you be overwhelmed by the beauty of diversity and the unquenchable nature of the human spirit you behold among those whom you once could not understand.

That day is coming, friend.

You will see.

And on that day, your “I’m sorry” will change to “Let me join you.”