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.

“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.”

My son is eight years old. He has the best personality. He loves connecting with people and being involved in the conversations and activities happening nearby. He is non-verbal and using his eye-gaze communication device, he is one of the most talkative people around. One of the areas he excels in when it comes to speaking up is self-advocacy. He wants to be included, he knows he deserves to be included, and he will make this information known.

Recently, we encountered a situation where my other children had been included in an activity by an adult but my eight-year old had been left out. Although I was tempted to immediately intervene, I decided to step back a bit and see what would come of my son speaking up for himself. He began speaking about the activity, obviously ready to be included. When that was ignored, he moved to his self-advocacy page in his device and began to say “Please include me” repeatedly. When that, too, was ignored he added “that was not polite” in between the “Please include me.”

When even that level of speaking up for himself was utterly ignored, he turned the volume of his device to loud and continued saying the same phrases.

Nothing. At this point, I had enough, intervened, and took a more aggressive approach to requesting that he not be left out. The adult leading the activity made a comment that really caught me off guard. He said “I would have included him but there just really wasn’t a good way to do that” and went on to explain how difficult it would have been to include my son. The thing is, it wouldn’t have been hard. It would have taken very simple adapting.

This incident caused me to reflect on the different ways people choose or choose not to include my multiple children who have disabilities. My son did a lovely job advocating for himself. The fact that he was not included had nothing to do with son and everything to do with resistance to include (or perhaps ignorance and resistance to learn) on the adult’s part and an unwillingness to be seemingly inconvenienced.

Inclusion is always possible. Is it always easy? Maybe not. Does it always look how we thought it would? No.  But I do believe it’s simpler than many people perceive. I have attempted to imagine something my children couldn’t be included in, in any capacity, due to their disabilities, and I cannot. There is never an excuse for excluding a person because of one person’s disability and or another’s own unwillingness.

If someone doesn’t know how to include, they should ask.

If they are unsure if a child is wanting to be included, they can ask the child. This concept is a simple one even to children. My own children have a keen sense of inclusivity. In fact, we have had to start working on learning that it’s ok to *not* include children on the playground who don’t want to be included rather than force them into the play taking place. If my young children can understand that humans ache to be connected and included, so can others.

I am weary of having to fight for inclusion and watch my children face the threat of being left out. Those who love my children well stand out because they are the ones who do whatever it takes to include every single one of them. Most importantly, they are willing to ask when they are unsure about how to include and in turn, accept guidance on how to improve.

Inclusion doesn’t have to be perfect and even acknowledging the person’s desire to be included goes a long way. While I fight for inclusion for my children and family every day of the week, there are some situations I will no longer battle against: I will no longer fight for my inclusion or my family’s inclusion within circles that are wholly unwilling to include my children—every single one of them.

People matter. Therefore, inclusion matters. Adaption matters. Effort matters. Excuses don’t. It’s ok not to know. It’s not ok not to learn. There is always, always a way. The key is understanding that we don’t always find a way to include and adapt. Rather, we have the privilege of *making* the way.

Permission for a Change of Pace

This week, I did something that felt a little crazy. I contacted nearly all the places where our children have weekly appointments/therapies and I asked to take three months off from attending. I had twinges of nervousness as I wondered if the providers would think I was being a neglectful parent. I worried that the intuition and thought that went into this decision would be doubted or scoffed at it. I felt concerned that they might tell us if we take time off, there would not be a spot for us when we are ready to return.

But you know what? None of those things happened. With each phone call and email, I explained that our family had been dealing with some challenging circumstances the last year and that we were in the middle of some big decisions and transitions. We needed time to be together and not run from place to place for a while.

Each provider responded with understanding and support. They agreed that breaks are wonderful and needed. They assured me that they have seen how dedicated we are at home to develop skills and provide a therapeutic environment. Then they simply told us to call back when we are ready to return and they would get us set up with appointments again, even if it must be at a new time than before. And that was that.

I had a new feeling of lightness and excitement.

The rest of the week, I had a new feeling of lightness and excitement as I looked at the days ahead of us. I am planning a summer full of being home as a family, spending long days outside, and taking a couple of the small vacations we have talked about for far too long. I truly don’t have any fear of my children regressing because I know first-hand how much progress we make in each hour that isn’t spent inside a clinic.

I am so thankful for our therapists, doctors, and other providers. I also trust my own intuition as a mother, and my training and experience; to parent my children with disabilities well. This will be the longest break we have taken from weekly appointments, but it won’t be forever. I fully believe that we will return to our regular schedule three months from now; renewed and more ready than ever to dive into a busier schedule, and lofty therapy goals.

Breaks are not only okay; they are absolutely needed!

As caregivers to children with disabilities; from day one we constantly hear the list of therapies, procedures, and interventions that our child “needs” in order to function their best. What we don’t hear as often is the need to sometimes step back, enter a change of scenery, pace, and know that this will not destroy all the work we have done or will do in the future. Not only will it not worsen progress, but I also truly believe it will give a needed reset and re-inspiration.

Take the break…

The excitement alone that I have felt since following through on this decision, has shown me that the right decision was made. I also know it could have happened much differently. I could have faced resistance, threats of losing services, or suspicion of making less-than-the-best decisions for my children. Even then, the validity of our needs and correctness of the decision made would not be false. Friend, you don’t need permission to prioritize rest, togetherness, fun, and refreshment. But just in case you are under the impression that you do, here is your permission: TAKE THE BREAK. You need it. Your child(ren) needs it. Your family needs it. And I know you will thank yourself later and those around you probably will too.

It feels silly to say that my family is within a tough season because I’m pretty sure I have said that my entire life, perhaps more so with each passing year. I don’t mean that in a pessimistic, “woe is me” way. I simply mean my family faces a seemingly abnormal amount of hardship from a whole lot of different directions. Many of our trials surround things that are somewhat “chronic” and likely won’t come to fully pass anytime soon. Overall, we are confident in our calling and purpose, even on the hardest days. But they are still just that—hard. Really hard.

How is this real life?

A few months ago, I remember turning to my husband in a bout of grief and saying: “It’s only March and I am not sure we can handle any more blows this year. How is this real life?” Well spoiler alert…more blows came. Lots of them. A couple weeks ago I decided that we, for real, could not handle any more heartache. We were looking ahead to a serious surgery for our son the next week, a surgery that caused me more worry than perhaps any of the other 22 surgeries we have faced with our children in the last five years. I truly had no idea how we would make it through this when we were already carrying so many burdens.

But you know what…? We are making it. Today marks well over a week since my son’s surgery. There have been many miracles and also some tears and very dark times tucked into the last several days. Yet somehow, we kept putting one foot in front of the other, even when we didn’t realize it. Things aren’t perfect. In reality, they are an absolute mess in many ways. But we are making our way through.

This begs the question…how?

How is it that time and time again, I look at the dark valley stretching on every side of me knowing there is no way out, and still take another step while catching glimpses of sun along the way? How do I so often end up past–or at least trudging through–that which I was sure I couldn’t face?

For me personally, my faith is always my number one strength, reason, and hope. I walk beside a good, kind God whose greater purpose and willingness to step into the muck beside me changes everything. Beyond that though—or more accurately, within that—there are so many things that aren’t obvious to me sometimes until I look back and see how they are the reasons I continue putting one foot in front of the other.

Within the hardship of my son’s most recent surgery, part of my “how” was a small message group I used to keep a handful of people informed before, during, and after my son’s surgery. I have never done this before, as past trauma of my own has created terror of being a burden to others, in addition to past experiences of deepest hurt when we shared information with people who don’t value our children as we do. But this time, I pushed myself to keep these few, kind, willing people informed and each message I sent felt as if I was literally sharing the burdens I was carrying. Their prayers, encouragement, and simple willingness to be informed meant so much to me. Through individuals in this group, my son had the opportunity to be surrounded and prayed for by a large group of faithful people a couple days before surgery. We carried their prayers and support with us to the hospital and beyond.

There are so many other things that come together to create the “how” behind my ability to be ok

My incredible therapist who has been an absolute God-send and rock for me. My precious friend and nanny to my children weathers many storms with our family, holds down the fort during hospital stays, and gives me mental health breaks whenever I need them. My remarkable husband is present and attentive to my fears, triggers, and need to vent. An organization in our city supports families of children with life-threatening conditions in the most incredible, tangible ways. A friend of mine drops by delicious freezer meals and treats.

Music.

Medications (no shame if you need a little extra help from science to be ok!).

Unexpected naps.

Late night tacos and ice cream.

Sunshine, fresh air, and open windows.

I could go on.

If I am honest, when my mind is in a weary and hurting place, it can be difficult for me to realize that I truly am weathering the storm instead of drowning in it. Many times, my “ok” doesn’t look how I want it to, especially when I am longing to be so much more than just ok. It can be hard to look for and acknowledge the progress and the reasons behind it. But once I find myself looking for the “hows” behind my ability to keep going, the list is endless and I can’t help but let my overwhelm with circumstances transform to overwhelm with thanks.

If you find yourself in a season where you are just ok or maybe a little less, it’s alright.

Life is hard, my friend.

You are here.

You are making it.

You are enough.

Dear Nurse,

I see you. I watch you buzz around the room administering meds and treatments, answering my endless questions, and not blinking an eye at yet another mess to clean up. I watch the way you so tenderly touch and speak to my child, slowing down and spending seconds you don’t have simply to dote on my little one, make sure she is comfortable, and pretend to interact with her favourite stuffed animal.

The needs from your many patients are intense and endless, yet you never leave the room without asking if there is anything I need or anything you can do for me.

You listen with compassion to my concerns and take immediate action to join me in my advocacy

By no fault of your own, you are stuck on the receiving end of my frustration. This is at the hands of doctors who drop balls, are slow to meet urgent needs, or set themselves against me in the fight for my child’s best. You listen with compassion to my concerns and take immediate action to join me in my advocacy. Taking time to ask about pieces of my story and to speak support and encouragement to me.

You remind me that I am doing a good job, my child is blessed to have me, and I am enough. You withhold judgement and choose to be a source of calm in our chaos.

Above your warm smile, I see exhaustion mingling with the kindness in your eyes. I imagine the dozens of hours you have already put in this week. I picture you returning home after a night shift this morning, dropping your keys on the counter as an exhausted sigh finally rises from your chest. Perhaps you slipped into pyjamas, soaked in the wonder of having arrived at your needed time of rest, only to hear the ring of your phone, followed by a pleading request for you to cover a dropped shift later in the day. Regardless of how you came to be here, you are present. You sacrifice. You show up.

While for my family, hospital days are often unexpected and may find us amid life’s lowest valleys. It could just be another day on the job for you. You could cluster your patients and their families into one general category of boxes needing checked in a day and nothing else. The raw reality is that many medical staff do operate this way. But, sweet nurse, you don’t.

You choose to treat our story as unique

As once in a lifetime. You chose a career that allows you to stand beside us in the sacred space of heartache. A place where doors for miracles and moments, that will define our family in one way or another for the rest of time are found. The hours spent in these hospital rooms matter. They form core memories and experiences for families laced with terror and glimpses of hope. Entering into these moments in time you tenderly cradle the weight of these experiences. You are alongside us as we beg for miracles to show themselves woven within the horror story.

Kind nurse, are beauty in our ashes. You are our breath of fresh air. Even when we deal with arrogant doctors and standoffish nurses, apart from you; your compassion is enough to remind us that we are seen, loved, and cared for.

You are changing the world

Whether you are placing an IV, cleaning up another round of bodily fluids, or simply listening to the heartache of a mama watching her baby suffer. You are changing the world.

You are appreciated and loved more than you know.

Sincerely, A Mama Bear of Medically Fragile Cubs

Most of us have been told, at one time or another, not to make assumptions, for they can often be or lead to incorrect conclusions. I see a great deal of wisdom in this. I’m a mom to many children who have disabilities or severe medical conditions. Daily, my children and I are frustrated by those around us. They make incorrect assumptions about my children based on their disabilities or diagnoses.

While many assumptions anger me, I must admit that I have also become quick to assume many things throughout my parenting journey. Through painful experiences time and time again, I have learned to assume that I will have to fight for my children to be treated as human. That every stare is unkind, that a stranger approaching should place me in defence mode, or that professionals we work with will hesitate to see my children as who they are. 

Right or wrong, assuming happens all the time and it makes sense that people say to avoid it entirely.

However, I’m not sure that a complete absence of assumptions about anything ever is something we can achieve as humans. It is part of our nature to fill in blanks about a situation so that we can make accurate judgements and, therefore, choose appropriate actions.  

Rather than asking that you refrain from making assumptions, I have two requests:  

1) That you, as a human being, choose to change the nature of what you assume about disabled individuals until told otherwise.

2) You be a part of changing the regular experiences families of disabled individuals have so that we, too, can begin to assume differently.

When interacting with families like mine, changing what you assume might look like:

• Assuming my children’s competence
• Assuming my children can hear and understand every word you say
• Assuming my children are keenly aware of your body language and unspoken reactions to them
• Assuming my children don’t want personal topics about them discussed without permission
• Assuming my children want to be included, no matter the effort required
• Assuming my children want questions about them directed to them, no matter if/how they communicate verbally or non-verbally
• Assuming my children have age-level intelligence and interests.
• Assuming my children live vibrant, meaningful lives (because I promise they do) and will continue to for a long time.
• Assuming my children hate to be talked to as if they are younger than they are or as if they are to be pitied.
• Assuming my children have unique opinions, talents, interests, struggles, thoughts, and feelings.
• Assuming my children are completely different from anyone else you have ever met, despite a similar disability or diagnosis, and don’t want to be compared to others, disabled or not.
• Assume we do not want your advice about our situation unless we ask for it.

I Know I Am Not Alone.

When I say that disabled people and their families desperately want to have our poor or defensive assumptions proven wrong so often we can begin to assume differently about the intentions of those around us. What if you become a part of changing what we experience daily, that we might:

• Start assuming you are staring because you are admiring our children instead of being rude.
• Assuming you want our children to be fully included and you will do whatever it takes to accommodate all of us.
• You assume a comment that comes across wrong was meant in kindness, was innocently ignorant, and you desire to be taught how to be more informed and aware.
• Assume you will politely ask if you have questions about our children’s needs. How best to interact/accommodate, or want to know better how to have a relationship with our children and our family.

Imagine what a world we could live in if we assumed the best whenever possible. Sometimes, we may not even realize how hurtful or off-base our assumptions are. Even if good assumption happen to be incorrect, the world is not going to come to a screeching halt. The chances are, we can do less harm incorrectly assuming the best that assuming the worst in many situations.

So DO assume…differently.

I’ve always been a bit of a people pleaser and will often keep my preferences to myself in an effort to avoid relational friction. This means the phrase, “I don’t know” is a frequent flyer in my vocabulary, as I push the weight of decision-making onto others rather than speaking up and facing potential disagreement. It is something my husband used to habitually tease me about, as he would ask where I wanted to eat, knew I had an opinion, but I told him I didn’t know. It even bothered him sometimes because he wanted to know we were doing what I truly wanted and I wouldn’t say. After we had been married a few months, he became the person I trusted more than anyone on the planet and I finally began speaking up and telling him that, actually, I really would prefer tacos to pizza.

Our life became a flurry of medical terminology, therapies, hospital stays, medical equipment, and greater, more unconditional love.

Soon after the start of our of marriage, we grew our family rapidly through specialized foster care and adoption and found ourselves parenting multiple children with disabilities and medical conditions. Our life became a flurry of medical terminology, therapies, hospital stays, medical equipment, and greater, more unconditional love for these little people and delight in them than should even be possible! A couple years into our unique life calling, my husband noticed I was once again pushing decisions about little things (like where to eat) onto him, even when he knew I had an opinion.

As he began to poke fun at me about it, I looked at him one day and said “I truly don’t know, I DON’T know! I know it is not big deal to choose what to eat but it feels like my brain literally can’t pick!” I noticed an absolute inability to choose presenting itself in more areas of my life and it seemed different from years past, when I just wanted to keep others happy.

Honestly, I have lost a great deal of my people-pleasing tendencies as I have grown into a mamma grizzly bear roaring in advocacy on behalf of each and every child in my home. I have no issue telling doctors, specialists, and other professionals what my opinion is for my children’s care and standing my ground until they follow through. But ask me if I want to go mini-golfing or bowling and I freeze like a deer in headlights.

It suddenly made so much sense…

It was puzzling to me until one day, an article on the web caught my eye. The article highlighted something called “decision fatigue”. It explained how this concept of inability to choose between unimportant choices was common among parents of children, living with severe disabilities or medical conditions. It suddenly made so much sense.

Day after day, I am asked to make immense, life-changing decisions on behalf of my children. Do we continue treatment or stop? Do we choose one surgery over another in hopes of relief? Which risks do we take and which do we leave? What therapies are worth the effort, and which aren’t? I hardly ever have a break from huge decisions that must be made. Furthermore, when I make them, I make them boldly on behalf of those who depend on me. However, when it comes to the small thing, my decision maker is fatigued…it’s shot. When I say I’m not sure where I want to eat on a rare night out, I mean it. When I say I can’t decide what colour to paint our dresser, it’s no joke. I truly *don’t* know.

I showed my husband the article about decision fatigue and his jaw dropped. “This is YOU!” he exclaimed. Since then, he has shared that he has slowly learned to recognize when I can’t decide because I am decision fatigued. Also, when I am pushing a decision someone else’s way to avoid conflict, despite having an opinion.

When I’m decision fatigued, he takes me at the word of my “I don’t know” and makes the decision for us. When I do know and I am simply avoiding, he gently pushes the choice back my way and asks me again to choose. This enables me to have some control over the trivial, fun things in life rather than only life-changing decisions.

Identifying the reality of decision fatigue as a mom to children with disabilities has been eye-opening to me. It’s helped relieve friction in relationships–especially my marriage–as I can explain that there are times I truly do not know.

I love, adore, and treasure my special children

I may not know what movie to watch tonight or what toppings to ask for on my pizza. However, there is one thing I always, know. No consideration required. I love, adore, and treasure my special children more than I could have ever fathomed. There is nothing that isn’t worth it on their behalf….decision fatigue and all.

Being the people pleaser that I am, I have spent much of my life giving yes after yes to people who needed something or invited me to something.

If I ever couldn’t attend or engage, I immediately began over-explaining the very valid reasons why I was truly unable to attend.

And still, some people simply didn’t understand how I could give no for an answer.

I have been doing hard work with a therapist for a quite some time and boundaries, especially as a parent of multiple children with disabilities, has been a frequently addressed topic.

It is exhausting to feel like I need to say yes to others when I am depleted, my children are struggling, or for reasons I may not want to explain.

To combat this, my therapist asked me to start using a simple phrase with little to no explanation to follow.

The phrase is: “Thank you, but that won’t work for us.”

This phrase isn’t only reserved for times when we are too ill to leave the house or have a scheduling conflict.

I have the freedom to use this phrase anytime….and so do you.

However, I understand that it can be frustrating for those on the receiving end. It may seem like there is no reason for my turning down of an invitation to connect, socialize, or help-out.

I realize this and I ask for grace. I ask for you to know that I am learning the validity of reasonings I use to ignore.

I am learning to prioritize my family’s wants and needs and there isn’t always a way or desire on my end to explain such things.

When I say, “That doesn’t work for us,” I might really mean:

-My child is in too much pain to leave the house today.

-We haven’t slept in four nights and I am too tired to be around people.

-My child has a compromised immune system currently and we can’t be around foreign germs.

-We have had 16 appointments this week and one more scheduled thing is just too much.

-My child is triggered by you and we don’t know why.

-You say really insensitive things about my child, and I am too weary to stand up to that today.

-We finally have a day without appointments or procedures, and we just want to be home.

-Depression and PTSD are kicking my rear and I can barely make it through the day caring for my children.

-We can’t attend because of the lack of accessible toileting options.

-My child has some really embarrassing behaviors right now.

-I am feeling fragile and it hurts too much to be around people talking and bragging about their developmentally “normal” children.

-I can’t handle all the questions about how we are doing and what we are dealing with today.

-That location is really inaccessible, and my child feels self-conscious about being carried and positioned and fussed over so much.

-My child is healing from a surgery or procedure we aren’t comfortable sharing about.

-My child is waiting on a new wheelchair and doesn’t have a comfortable way to get out of the house.

-Not all my children will be able to participate in that activity or outing and I am not willing to leave some behind.

-We have really bad memories associated with that and need some time and distance to heal.

-I will use every last ounce of my reserve if I try to make that happen for my family.

-While that is an easy outing for your family, it takes immense planning for ours and we are just not up for that.

While this list may seem excessive, I could add dozens more reasons.

So please, be gracious when I turn you down.

Be understanding and maybe ask if there is anything you can do to make it work.

Don’t stop inviting us and just know we will give a yes when it works out the best for us and can be truly enjoyed for all involved.