Not so long ago, I wrote a piece about being a friend to “one of us”…you know, the parent of a child who has a life-limiting illness or a special need. As I mentioned there, it isn’t always easy having us as a friend. But, we are worth it! And as they say, all things worth while take some work. So, there are some things that we want our family and friends to understand about us, and especially those of us that are single parents.

We REALLY NEED you to hear this. Not just want you to hear. We need you to hear.

We are often lonely. And not just the kind of lonely one feels when they are in the house alone while the kids are at school and you find yourself not knowing what to do with your time. That’s not it. You see, we are alone. Really alone. No partner to lean on. No partner to share the weight of this often exhausting journey. Many of us don’t work outside the home because it’s impossible to keep a job when you have no spouse or family or a special needs daycare to rely on. That means we may not have talked to another adult in a day or two, and that can leave us feeling very removed from the world. And then when our long day is done and we go to bed, we don’t have the comfort of hearing our partner even breathing in and out in that reassuring way that says “I’m right next to you. Always.” Instead, when we go to bed, we hear the sound of the baby monitor that is telling us if our child, who is likely well beyond the age of a baby, is gagging or coughing or crying or having a seizure or if one of the alarms on the medical equipment is sounding. And in that moment as we lay in bed alone with the grey noise of the monitor at our bedside, we wonder will there one day be someone who could want to share this grey noise with me? And sleep takes hold…until across the monitor a noise comes to tell us sleep won’t be ours just yet.

We don’t get out much…if at all. Many of us have single friends, even friends who are single parents. They can usually find someone to mind their child without any problems and out on the town for a night of fun with friends they go. And when they do, they can even have a drink or two too many if they want because the kids are safe at home being minded. Insert “one of us” into this scenario. There isn’t anyone we can just ring and ask to mind our child with a life-limiting condition at the drop of a hat. Correction: there isn’t usually anyone we can ring to mind that child even with a month’s notice because that person usually must be a nurse. If it’s not covered by insurance of some form, that’s an expensive proposition, especially for the single parent. But say we get out…miracles do happen once in awhile…and the drinks are being served. Tempting! After all, we are stressed up to our eyeballs and the release would be great! But, no. We can’t. In the back of our mind we know that our mobile could ring any moment saying our child is having a seizure or our child is vomiting all his feeds again or…you name it. So what do we do? Side with reason, usually. And back to feeling like a social outcast we go.

We often use social media to connect. Yeah, that often dreaded, annoying tool of modern society that is social media. Remember, we are alone, lonely, and not getting out much if at all. So, here sits the laptop and that means friends at our fingertips! And while social media is often annoying, for us it is a real blessing. We get to chat with other parents like us…”one of us”…and it brings a semblance of normality to the way we live.

So, friends, this is what we really need you to hear: We need those of you who are not “one of us” as well. We need that semblance of normality! And we need you to not ignore us when we do give a good rant on facebook about feeding pumps or seizures or IEP meetings, or when we tell the world on social media how depressed or how lonely we are feeling (because, we ARE feeling that way. We really are not just seeking attention. We are seeking the comfort of friends). This is precisely when we need you to check in on us, to see if we are ok, to ask if we need to talk. We use this tool to reach out to you because frankly it’s often the only one we have…or, sometimes it’s the only way we feel safe expressing our feelings and needs so we don’t run the risk that our hope for friendship and connection will be rejected actually face to face. But we do need that face to face time. We do need friends to just drop in and check on us.

Let us know we aren’t as alone as we feel.

PS: please don’t forget to bring the chocolate and the wine.

When I carried my son for 9 months, little did I know that I would be literally carrying him for the rest of his life.

Those first 9 months of carrying my son were filled with such joy and anticipation. Finally, after 4 pregnancies lost to miscarriage, I was about to have that dream become a reality…that long awaited child to hold in my arms and never let go. And when he was born and the doctors said he was perfectly healthy, I held him in my arms while thinking to myself what an absolutely magical feeling it was to carry him up against my chest. Finally, my baby was here, healthy and beautiful. I could go from carrying him inside of my body to carrying him in my arms. I couldn’t wait to get home. And then, only a couple short weeks after, his condition was discovered and my world has never been the same.

Today, I still carry that precious newborn boy in my arms, although now it’s only out of necessity to move him from room to room or change from wheelchair to bed. Now, carrying him requires strength. Strength on all levels as he’s nearly as tall as I am…and as the disks in my lower back degenerate…and as his bones are fragile with osteoporosis. Strength of spirit as I remember what it was like to carry him as that newborn babe, staring into those blue eyes with wonder at what he would grow up to be. Strength of mind as I cannot allow those memories to take me away to a dark place, but instead must remain in the present as he is here, in my arms, for now.

When I carry my son, I can feel his arms try to come around me in a hug. He tries, at times…at times. I can’t carry him for too long, as he’s too heavy for me to carry too great of a distance. But when I do carry him, I can imagine how good it must feel for him to have that body contact with me, his mother, when most of his day is spent sitting confined in a wheelchair with straps and braces all designed to hold him safely in place since his body betrays him so cruelly. And so, before I set him down, we linger. I let his head snuggle up into my neck and then I put my cheek up against his and I whisper “I love you”…and he smiles with delight. The smile that says it all where for him no words are possible.

And then I set him down, ever so gently and so carefully…for he is my precious newborn babe…still.

 

I imagine that when my neighbours look in from the outside, they think what a mad woman I must be. “Did you see she’s put up her Christmas tree already and it’s only the 5th of November?!” “I did notice that! And did ya see that she’s got more animals in that house now?” “Go on, she doesn’t, does she?”

I did. And I have.
My house is filled with colour.
We are surrounded by life.

My son absolutely ADORES Christmas trees and the bright colourful lights! He gazes upon them with pure delight! The cheap stick-on decorations on the sitting room window that to him look like exquisite stained-glass in the finest of churches give him hours of endless enjoyment! You see, I know another little boy my son’s age who loved looking at Christmas tree lights as well, just like my son does. That precious boy gained his angel wings only hours ago…and he won’t see another Christmas. And as I sat here thinking about him this morning, crying until my eyes were red and swollen, I of course realised that is the inevitable outcome on this journey. That this IS the transition our angels will make. And then I thought of Christmas coming, and him, and my Brendan Bjorn, and the lights so pretty, and life, and death, and my friend who has now lost her boy, and, well…everything.

So yes, I now have our Christmas tree up and those cheap but exquisite window film decorations as well. The beauty they bring is priceless. Literally priceless.

You see, dear neighbours, when you look in from the outside, I am sure you see the Christmas tree and the decorations and think me mad, if only just slightly. That’s ok with me. What I see from the inside looking out is far more meaningful than what you see looking in.

What I see is timeless moments captured before time steals my ability to capture them again.

What I see is life being lived for the moment and to its fullest.

What I see is the innocent, complete, and immeasurable joy beaming from a life that will be limited beyond my control, beyond my every wish and prayer.

And so, look in from the outside if you will, if you want, and may you enjoy this beautiful sight. I know I will as I hold my angel a little bit tighter tonight thinking of the angel watching over him now.

After 11 years on this journey with my son, I’ve heard just about everything. Here are just 5 comments or questions that you shouldn’t say to a parent of a child with a life-limiting illness, and why you shouldn’t.

“How long will he live?”

Let me get one thing straight from the start: unless you know me well enough to ask what colour of panties I am wearing, you do not know me well enough to ask me the most sensitive question of how long my son will live. Bite your tongue. Resist. Just don’t do it. It cuts too deep and is most likely none of your business.

**There is one exception to this, other than being a close enough friend that you could actually ask about the colour of my panties, and that is if you are a fellow parent of a child with a life-limiting illness. In that case, the rules have changed and it is acceptable. I’ve asked other SN parents and they’ve asked me. It’s a family of sorts within which we have certain exceptions made for each other.

“If I knew my baby was going to turn out like that, I would have had an abortion”

Yes, I have actually had this said to me. Disgusting and appalling and it should never, ever be said to any parent of any special needs child…ever! You can think it, you can feel it, but for God’s sake, don’t ever say it to a parent! I don’t think this one needs an explanation as to why you shouldn’t say it. That’s obvious. But, I will say this…

To give of one’s self physically, emotionally, psychologically, and in all ways, to a child that you know you will one day be burying is the most selfless act of parenting there is. And it is damn hard at times. Some may say they would never do it, could never do it, and there are times WE say we can’t do it anymore…yet we do. You see, the unsought for GIFT and LIFE LESSON we receive in return is that of genuine, pure, unconditional love. We have the honour of now knowing what it means to GIVE and to RECEIVE true unconditional love. 

How could you have brought another child into your family when you had your hands full with your SN child…it was selfish of you to do and both children will have to sacrifice, which isn’t fair on either of them.

Oh, where do I start?! Life is not fair. Full stop. And isn’t that one of the very lessons we were taught as children? Isn’t that one of the lessons we now teach our own children? (and if not, we should be!) After all, no one ever said “Life will be fair. You will not have to sacrifice.” What others need to understand is that there is this amazing, beautiful bond that happens between a child with special needs and the healthy sibling. It’s indescribable nearly. BOTH children flourish as a result of their sibling. Do either of them sacrifice in some way, maybe lose out on time spent with a parent…or getting to go out to the cinema but can’t because the child with SNs can’t go…or being stuck in a hospital room for a week and having to entertain himself while sitting next to his sick brother? Sure! That happens. And it happens more than we parents would like. A lot more. But hear this: those healthy siblings are growing up with an extraordinary sense of compassion that you can’t even begin to imagine unless you’ve seen it first hand. They are “forced” to reach inside of themselves and be creative in play during those many, many hours sitting in an A & E or the dreaded week in the hospital room. They are learning a strength, a resiliency, that will serve them later in life – a quality of character which most children will not have had the opportunity to have gained. As they say, no one said it would be easy, they just said it would be worth it.

What’s wrong with him?

Ok, I fully understand that this question, or the wording thereof, usually comes from a place of not meaning harm. I get it. Please, if you are tempted after reading this to ask a parent about their child, refrain from saying “whats wrong with him?” There is nothing wrong with him. He does, though, have a condition. It is always better to ask “If you don’t mind me asking, what is his condition?” or “what has caused his challenges?” After all, we all have challenges, don’t we, but it doesn’t mean there is something wrong with us. Afford the same respect to our children, please.

You should put your child into a “home” and get on with your life’s dreams

Yep, I’ve heard this one, too. I know, unbelievable, right? It is, but considering the source is something parents on this journey learn to do from early on. We have to in order to survive. When it comes to this type of comment, my reply is always this: My dream was to be a mother and it is my son that made that dream come true. And there I leave it with the person to ponder.

Dreams are a funny thing. Sometimes we can influence what we dream, but most times we cannot. We can, however, dream new dreams. And we do. Beautiful new dreams.