There is was again, that voice in your head that won’t go away, the sinking feeling in your stomach that pulls you down like quicksand. Her fever spiked. It looks like a bad cold but is it? It feels like something more.
“Doctor, this seems different to me, if that makes any sense. Are you sure it’s nothing? Please, keep looking I think it’s something else.”
I watched Grey’s Anatomy this evening. The episode showed a mother determined to convince the doctors that her voice, her sinking feeling had to be right. Something was wrong with her child and they were missing it. I watched the moment when they treated her like she was overtired and delusional. In that one moment of watching the drama unfold on screen, I remembered….
I’ve been that mother, the one hell bent on having someone listen. When my daughter came into this world, she came from the result of my instincts. There was nothing out of the ordinary that day. I was not in labour and I was no where a near my due date. I woke up and it was a normal day – all except for that voice, that feeling, that knowing that beyond any logic things weren’t okay. She wouldn’t be here today if I didn’t follow my instincts.
Several months after she was born, I had another go around with the doctors. I was convinced something was wrong with my daughter. She would breast feed but when the hospital tried to bottle feed her; she would cough, gag, and choke. The hospital ignored me and called the pastor to come talk to this delusional mother who was driving everyone crazy. Later we found out she was aspirating into her lungs.
A few years later, her fever kept spiking. She had a rash and swelling. I was told it was Fifth disease, a common routine childhood illness. My instincts told me it was a reaction to her medications. After being turned away several times from the emergency ward as that delusional mother, I loaded my daughter into the car and drove 5 hours to a different hospital. Motherly instincts were right again, she was having an allergic reaction. It was so bad she had pancreatitis.
Instincts are a powerful thing if we listen to them. They can guide us in the directions we should take. If we ignore them, we stumble and sometimes the recovery is long and painful. The old saying “mother knows best” isn’t just to annoy us when our mother is right all the time. It’s a reminder that mother’s have connections to their child that can’t be explained. Instincts are something we should never doubt or ignore because more often than not, they’re bang on. I like to think of them as angels showing you the way.
A friend, who is of Christian faith, shared this YouTube video with me a little while ago. I’ve shared it with a few people since and it’s brought some mixed reactions.
This dog is so persistent that you can’t help but be touched. I couldn’t help feel for the little boy who has Down Syndrome. I’m not sure he was always that impressed by the heavy dog paws.
A dog can be a child’s best friend and this dog is determined to be just that.
There comes a point where parents have to make decisions for their child’s welfare in the event the parents pass away leaving behind the surviving child. They determine who will get their child, how the child will be cared for, what financial means will be there to support them, who will manage the finances, and who will protect the child’s best interest.
When a child has a disability, Wills, Trusts and Estates become more complicated. The decisions you make in your Will, how you set up a Trust, or how your Estate is managed can have long term effects on your child’s disability pension. Just doing a home will kit most likely won’t be enough.
There are two sources I found useful to contact in BC, Canada that offer online courses in setting up and understanding Wills, Trusts, and Estates. Plan (Planned Lifetime Advocacy Network) and ACT (Autism Community Training). Plan has both in-person and online courses to guide you through the steps of preparing a will and estate planning. ACT has an online video Estate Planning for Families Who Have Children with Special Needs in BC. Both Plan and ACT also discuss the Registered Savings Disability Plan. (Low vision users please click on the full organization names listed above for links)
Whatever decisions are made, even if they are not ideal; it’s better to have something documented than to have someone else make those decisions for you.
I started this year with grand intentions. I believed that finally after all this time, my daughter no longer needed so much of her mother and I could continue my journey back to being me and to all that I love. I was driven and determined to make changes in my life.
Positive thinking has great power. In the face of adversity, positive thinking becomes strength you often didn’t know existed. Strength is a funny thing though. It comes when you have no choice. When you need to make choices, strength is often the hardest thing to find.
The past two months have shaken me to my core. My goals for this year were quickly set aside when a serious health issue came into play. News of my health was followed by the loss of someone dear to my heart, who committed suicide.
So I’m trying to find strength and to understand. I’m fortunate and touched by the overwhelming support of others. The fight for my health will be a long one but I’m good at taking on challenges. I’ve had plenty of practice. It’s the battles of the heart and mind over things I cannot change that scar my soul. It’s the regrets, the what if’s, the whys and wishes. It’s the memories that comfort and haunt.
I believe in this blog and my intentions to help other families and people with disabilities. I’ll continuing plugging away at it as long as there are readers. For now, please understand my posts may be few and far between as I journey into health and healing.
To T.C., Always in my heart and soul. Love Q.T.
It’s 2013! If you haven’t already made your New Year’s resolutions, then you better get cracking – just kidding.
As television bombards viewers with weight loss commercials to influence our New Years goals, I happily eat every last chocolate the holidays had to offer. Do I feel guilty? Maybe a little, but I don’t need a new year or commercials to push me towards dieting. When I decide my butts too big and it needs some serious help, then I’ll hit the treadmill, down extra fluids and leave the chocolate stash alone.
We all have different ideas of what the New Year means to us. Every year I start out with huge lists of great intentions. I don’t like to think of them as resolutions. To me, the beginning of a new year is simply starting a clean slate to reorganize myself. I look at my current schedule of what’s working and what’s not. I factor in the extra things I would like to do and weed out the useless things that are taking up my time.
No matter how well planned I think I am, there are always things that pop up along the way and the plan needs tweaking. I admit it, I take on a lot. I’m struggling from some kind of false illusion that I can do it all. I’ve realized though, that for the most part if I set my mind to it, I’m a great multi-tasker. I just have to remember to reach for the life vest when I jump in over my head.
I’m looking forward to this year. As each year passes, I can take those opportunities to read, play, write and exercise my holiday pounds away at my leisure. My daughter is becoming stronger and less dependant on her mother. The parental pressures are still very hectic, but she’s not as fragile anymore. Life with a child who has a disability always reminds you of what’s important. She’s my Happy New Year. The schedules, plans, diets, etc., are just the stuff in between.
Happy New Year to all. May the year’s journey bring bright smiles and warm hearts.
It’s that time of year again. Like so many other people, today I did the holiday hustle. You know, it’s when you park your car, step out into the masses and suddenly you’re shot into what otherwise resembles a pinball machine. Your ears buzz with background noise. There are moments you score and find exactly what you’re looking for. In your conscience you’re rewarded with Ding Ding Ding- Way to go!
In your quest for the perfect gifts, you weave left and right, you turn, dodge and duck past the other shoppers gaining just a few minor bumps. But wait, there’s only one of your wish list items left on the shelf. You scramble but someone beats you to it. That Ding Ding Ding quickly turns to Sorry, try again later. Oh, so close.
Despite my now tired feet and need for a soothing shot of Baileys Irish Cream, I didn’t do too badly today. I would have liked to be the organized shopper who was done their holiday purchases last month, but that wasn’t meant to be. My recent trip, followed by my surgery, made shopping low on the priority list. My biggest difficultly however, is always groceries.
Grocery’s is a must for the festivities. Shopping for them can be just as nuts as shopping for presents. It’s really a challenge to push my child in her wheelchair and manage a grocery cart or basket. We were definitely I sight to see when I was still on crutches. The looks of shock or the odd chuckle from passers by made me laugh every time. What else are you going to do? Though this juggle borders on humanly impossible, sometimes it just has to be done. Otherwise, I’ve often had to leave my child with a sitter or come up with some fancy contraption to use in the cart.
Recently my friend sent me a link to a potential cure for these shopping challenges. Click here to check out Caroline’s Cart. It’s an innovative idea that could definitely make things easier for some parents of children with disabilities. I’m not sure if Caroline’s Cart is available in Canada yet but where there is a will there’s a way. If you like this, spread the word or share your ideas on what works for you and yours.
Good luck on your holiday hustle.
I’m going to ramble a bit, just a pre-warning. If you still want to read, I recommend having a cup of whatever your heart desires and why not put your feet up while you’re at it. Here it goes.
My topic today is: The balance between being diplomatic or allowing emotions to do a rapid ascent out of my soul, past my lips and completely lose it. The old saying “when it rains it pours” holds little comfort, yet it’s said every time things go wrong. Is it just short for too bad, so sad, suck it up sister? Hmmm, it seems like it. Then there’s “the squeaky wheel gets the grease.” What’s that saying? It’s ok to scream, yell and bitch to get action? Not really my style. Lastly there’s the act of diplomacy. Sometimes that works well. Other times it’s clear that being diplomatic is an open door for people to feel relaxed and not take you seriously. Read the rest of this entry »
There’s a common theme in conversations I’ve shared with other parents of children with disabilities. We often talk about our experiences and the challenges we’ve faced finding information, resources or services for our children. One mother posed the question…”Why the secrets?” I knew exactly what she meant. Sometimes it seems as though information that should be easily available, is instead protected like it’s the last can of food amongst a starving community. It’s not the first time this question has come my way. It also wasn’t asked with the expectation I should have an answer. It was more a common ground with a hint of sarcasm and frustration. Read the rest of this entry »
A friend of mine has an adorable son who right now is trying to understand why cars are moving so quickly, why the buildings are so tall, the lights… there is so many lights, the sounds…..Mommy make them stop. As I type this post, he is experiencing sensory overload and his Mom is doing her best to calm him, all the while knowing she is exhausted. Her heart pumps like thunder with the occasional strike as she tries to slay the many dragons that are coming at him and convince him everything is okay. At the end of the day as his tired eyes finally close, the noise is quiet, the sights and smells go away; she takes a moment to breathe.
Her son, Mr. C as she likes to call him, has a variety of chromosome disorders: Chromosome 15q Duplication Syndrome (Dup15q), 17q and 3q23. Seizures, cognitive delays, behavioral problems, fine motor delays, anxiety, sensory processing, speech, language and even sudden death are some of the many characteristics of children like Mr. C. He is the only documented child in the world known to have 3q23 Chromosome Syndrome. As I type that, I can’t imagine how terrifying that must be for his mother and father. Mr. C is too young to understand. Read the rest of this entry »
When I was young, Thanksgiving dinner was family time. My mother would make the usual turkey dinner with all the fixins and have the table set with her best china and autumn decor. I remember the aromas that came from that kitchen like it was yesterday and the desserts were simply too hard to resist. Gradually, we all resembled the overstuffed turkey that had graced our table. If we weren’t already prepared for the feast by wearing loose clothing; it was the moment my sisters and I would descreetly undo the top button of our pants and let out a sigh of relief. It was a table filled with love and laughter.
Those years have long past, and getting together with family has become next to impossible. I’m thankful for those memories and hopeful we’ll someday share Thanksgiving again. Over the last few years, Thanksgiving has been spent with other family and friends. Though I miss the old days, it’s these times that I feel so fortunate to be welcomed and loved by so many.
My little girl is having a hard time sleeping tonight and though this might be selfish, I’m thankful for that too. It means I get one more cuddle as I try to get her to close eyes for sweet dreams.
Best Wishes everyone. Thank you.