Sometimes I Just Don’t Know….

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Often times when things occur with Olivia, it is a difficult challenge to determine what exactly is the cause or symptom. Why? Because Olivia is nonverbal and due to lack of muscle control, is unable to use sign language or point. We have been working diligently the past year to teach her to communicate effectively, using an Eye Gaze Board. The board isn’t anything too technical.  It is made from plexiglass and has velcro strips adhered to the surface, so picture cards can be easily attached. The board is a great tool for giving Olivia opportunity to participate in decision making, such as choosing an activity like painting or reading, but I find it difficult to use when she is in pain or some other form of discomfort. Usually because of her demeanor in these circumstances, she can’t concentrate on anything but the pain at hand. We are then left with the infamous guessing game….

There is no greater form of stress than to witness your child suffering from pain, and knowing they have absolutely no way of telling you where it hurts or how to make it stop. This past week has been an emotional rollercoaster,  watching Olivia struggle with eating and the struggle to keep it down to watching her try to deal with random spasms occurring, in what I think, was her hips or maybe her thighs. Many nights were spent either cleaning up vomit and changing bed sheets or performing stretches and warming heating pads to bring some relief to her.

Five nights have past and last night was the first time she slept through, peacefully. She awoke this morning bright eyed and ready to take on the world. These are the moments that set me spiraling because, as thrilled as I am that she is showing signs of improvement, I am still puzzled as to what was the cause. Virus? Or a product of Cerebral Palsy?

Cerebral Palsy…..

When Olivia is at her healthiest, I often forget that CP is a part of her. I can’t help it. I get caught up in her laughter and contagious smile or how she can be oh so impish when playing with her brother and sister. I hate how reality jolts us back into perspective; robbing us of that beautiful peace of mind.

This is the unfair reality that tugs at my heart strings.

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Sometimes Mornings Really Do Suck!

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You know what? Some mornings just suck. As hard as I try to always find the positive,  today is just one of those mornings that finding the positive is impossible.

I live in Canada and our winters can often times be more than I can handle; with the 36 below frigid temps, to snow, sleet and the oh so popular half-a- dozen- layers of clothes you need to put on before stepping outdoors.

Today was no different. Only minutes before walking out the door into Queen Elsa’s Winter Wonderland (I have two girls and have seen Frozen more times than I would like to admit ), my daughter Olivia, who recently received a feeding tube, power puked all over me and my living room. Let’s just say the feeding tube is a work in progress for us….moving on….

After getting Olivia’s umpteen layers of puked soaked clothing off, cleaning her up, and redressing her into another umpteen layers of clothing; myself, my daughters Kameron and Olivia all headed out the door to walk to school. Did I mention Olivia rides in a wheelchair?  Yeah…did I mention how awesome it is to drag, pull, hell have to take a running start to get the damn thing through snow? So months before the winter arrived, we applied to have our children bused together, hoping an accessible bus could pick up Olivia, as well as accommodate taking her siblings. We found out that Olivia could be transported, however not her siblings. Sucks right? So here we are months later, me dragging a wheelchair through snow and literally four wheeling it up over snowbanks,  all the while my other two children follow. A two block walking distance took me….get ready for it…45 MINUTES TODAY!

I am summing up this morning just as it was….A morning from hell. Now off to drown my sorrows in a rather large cup of coffee!  Here’s to hoping the rest of the day is looking up!

We’re Not That Different

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For someone who has never raised a special needs child, it may be quite difficult to understand the day to day of a family raising a child with special needs. I get it. 

I have had strangers and at times, people close to us,  saying things like, “you poor thing” or “I feel sorry for you”. Those close to us, in some way probably thought they were exhibiting some sort of compassion, but it’s not compassionate to pity someone.  I am going to share with you the same words I have shared with them, “I have so much love in my life. If you want to feel sorry for anyone, feel sorry for the individual whose life is not rich with love”.

Our situations are different, yes….but we are parents just like you. We love our children and provide for their needs just as you would for yours.  

Just because you probably have moved on from the baby stage with your kids and I am still changing diapers and bottle feeding my four year old, and more than likely you don’t have to carry and lift your child as much as you did when they were babies or young toddlers. Your calendars are probably not peppered with doctors appointments or upcoming appointments for procedures or consults with specialists. The inside of your home probably doesn’t resemble that of a medical supplies store. You don’t use terminology like “spastic tone”, “AFO”, “g-tube”, or “motility” in your day to day conversations with those in your close circle.

This is our life and it’s somewhat different….

We have different “stuff”, but every family has their “stuff”.

We also have love, laughter, beauty, at times frustration, anxiety,  fear, fun, excitement,  and so much more that comes from being a family!

Please remember all of this, the next time you approach a parent to a child with special needs. Next time, give a smile and a friendly hello. We appreciate common courtesy the same as you.

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The Little Things

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After spending eight days in hospital with my little girl, followed by a week at home of ups and downs with her recovery; I am thankful for moments like tonight, where we are cuddled up in a big old rocking chair and she is sound asleep in my arms. It’s these simple, yet oh so important moments that take away the sting of life’s stresses. I can honestly say when I have her in my arms, feeling her little breaths on my chest,  that all the anxiety and emotional turmoil I’ve experienced throughout the past two weeks, disappeared.

These are the moments I cherish and store in my heart. This is my happy place.

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Mom to Mom

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This blog is to the mother today,  who felt it enjoyable to encourage her child to squeal and scream out, while waiting at the doctor’s office. I get it. Your little girl was a real sweetheart and you couldn’t help but want to share her adorable personality with the entire waiting room. But here’s the thing….I bet you chose to ignore the startles and jumps that came from my daughter each time your child screamed. And you also ignored the heartbroken cry that poured from my child, basically begging your little girl to stop. Or how about the numerous times I made eye contact with you, all the while covering my child’s ears and burrying her head into my chest in hopes of muffling the sounds. Why? Because my daughter has noise sensitivity issues. I wanted nothing more than to speak firmly to you, but that would have upset my daughter even more. So I relied on body language and queues,  which I know you acknowledged because you locked eyes with me, but still proceeded to encourage the behavior. You don’t know how I weigh out taking my daughter into public places. How I try to predict if she can tolerate the noise level in certain restaurants,  venues, even family and friend get togethers before we even leave our home. We try to alleviate her reaction by communicating to her about noises we can predict; which she usually can manage, however unpredictable noises, likes screams, squeals or loud bangs, we can’t prepare her for. When those noises are continuous we usually pick her up and leave, but today she needed to see her doctor. Today, I had hoped for downright human compassion from another mother. I hope you see this post and think next time you are around another family, with a child who has noise sensitivity, you will be more courteous and have compassion that their child feels pain every time your child squeals with enjoyment.

It’s Not Easy

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Tired?  Uh-huh…Exhausted?  Hell yeah…Patience worn thin? You betcha…Worried? More than you know…Heartbroken?  If you only knew…

We are in day four of post surgery for my daughter. What I have learned from my child are the words typical, standard, and routine need not ever apply to any operation or procedure she has done or will ever have. About a year ago she needed surgery to release spasticity in her hamstrings and hip abductors. Her surgeon told us, “it’s pretty routine and she should be out of hospital three days later”. Yeah right…EIGHT days later she came home. Why so long? Well, Olivia had severe muscle spasms and severe pain following the procedure. She began spiking a temperature and stopped eating, all due to pain. Being that Olivia is nonverbal, she couldn’t communicate which part of her body was experiencing pain.  It was the most torturous guessing game, trying to find resolve to what was bothering her. I felt extremely helpless and wanted to take her pain. I prayed to God to give it me.

Here we are a year later, only this time it is for a “standard” g-tube procedure. (You noticed I put quotations around standard)  Even as those words were spoken by her surgeon I sarcastically chuckled and said, “Sure…we’ll see about that”. Her surgeon reassured Olivia would be “in and out in 48 hours”.  Four days later, where are we? Not a five star resort that’s for sure…nope we are still in hospital.  For the last four days Olivia has been hopped up on pain meds and her doctors are frantically trying to solve her pain problem. From what? Well the guessing game begins…

Having a sick child, for any parent is disconcerting, but when you have a child who is nonverbal and is incapable of pointing or signing to what is hurting, well that is a whole other heartbreaking, helpless mess of emotional torture.  Especially when your child’s tear filled eyes pierce through you, begging and pleading “Mommy make it stop! ” That’s the moment your heart doesn’t just break, it becomes completely crushed! That’s the moment when I hold her tight to me and sob along with her, rocking her, telling her how much I love her and how brave she is, when silently in my mind I am questioning “why her” and begging God to give me her pain. 

The paths we walk with our kids are not always easy and really what in life is? In the trying moments, the ones that rock us to our cores, I try to look ahead;  I know this present state is only a moment, an instance, a step to the next destination along this path. Positives will come from this. Olivia will heal and the benefits from all of what she has endured, will last forever.

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Be Strong

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“Be strong”….This two word sentence echoes in my ears, reminding myself to not let my emotions get the better of me through moments when I would like nothing more than to just let all the feelings go. However, it’s not the time or place for that. 

My mind goes into self preservation mode. I stay in the present so I can focus on information from doctors and medical staff, I remain upbeat for my daughter; often times producing some giggles and smiles from her beautiful face, I don’t want her to feel fear or anxiety because at the tender age of four, she needs to remain feeling like a typical kid, although her circumstance is far from typical.  I go through the motions of making small talk with my husband and then once called by the nurse, I will go inside the OR with Olivia until she is finally asleep from the anesthetic. I know from experience that when the mask is placed on her face, she will have little movements due to the medication and I won’t become alarmed because this is part of the familiar process we have been through one too many times. 

I wish this wasn’t her reality…Our reality…but we are not given the choice of what our reality will be, we are only given the choice in how we live with it. I choose to make the best of it because Olivia deserves the best of me. I am her mother and I will be strong for her.

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