I have always admired women who have toned arms. Truth be told, I am also fascinated by long, slim legs and the ability to walk so high up from the ground. I am 5ft 1′ so I have always been close to the ground. I gave up the dream of having long legs in my early 20′s (yes, it really did take me that long to get the fact that I would never be like Cindy Crawford).
I didn’t give up on the dream of having toned arms, though. I always had strong legs partially due to my genetic build and partially due to years of Irish step dancing. My arms, though slim, were never really toned. I still held out that one day I would get myself to a gym and would have the triceps and biceps I had only dreamed of.
Then Meredith was born and there wasn’t time for a gym or anything else for that matter. I never paid much attention to how my body was adjusting to the demands of having a baby then a toddler and then a child who needed to be held 15 hours of the day and carried and lifted for all activities. I remember cooking dinner with her draped over my shoulder. Using the bathroom involved slinging her over my shoulder while she arched while I went about my business. If I was alone it was the only option. Putting her down resulted in violent retching which would mean interrupting the bathroom break mid-stream. Meredith never felt overly heavy to me. She gained weight at a snail’s pace and since I had carried/ held her single-handedly for up to 8-9 hours per day over the course of 8+ years, my strength grew with her.
It wasn’t until I did a fun photo shoot for my 40th birthday that I really got a good look at the results of my “weight lifting.”
At first I was appalled. I had worked hard to get ready for this milestone birthday and had specifically asked the photographer to please not alter any aspect of me. However, once I saw my ‘pipes’ I wished she would have, through the magic of Photoshop, made them resemble arms that fit my body. People would look at this photo and actually ask me if this was my REAL arm. I used to reply, “Yes” in almost embarrassment but things have shifted in the wisdom of my 40′s.
These arms of mine have remarkably carried a human being around daily for almost a decade. Although we no longer hold Meredith for ridiculous hours on end, these arms can scoop her up and sling all 40+ pounds of her over my shoulder with relative ease. These arms safely carry her upstairs to bathe her. They lift her out of the tub and again off the floor once she is wrapped in her towel.
I suppose my wish of having toned arms came true after all although not in the way I had imagined. I have surrendered to the way they are and I proudly wear sleeveless tops and show them off. I am grateful that they have never let me down in the 9 1/2 years that I have depended on them every single day and night since becoming a mother. I am confident that I could join an arm wrestling circuit and do quite well. These arms are a visual reminder of strength and endurance and resilience. And they’re all mine.
On Mother’s Day, most of us will think of our mothers and hopefully be able to share a special meal with them, give them a card or even flowers or a gift. We will shower them with praise for all that they have done for us throughout the past year and throughout our lives and if you are one of the blessed ones, you will be celebrated as well.
If you no longer have your mother with you or perhaps, you never knew your mother, this special day can be a challenging one to get through. Although I celebrate all mothers on this day, I wish to dedicate this column to the “other” mothers that may not fit into our traditional definition of a mother. And I dedicate this column to those mothers who often get forgotten in the Hallmark sentiments and the television commercials.
- The mothers who, due to infertility or life circumstances, will never realize their dream of mothering but who have a heart worthy of this role.
- The mothers who never had a chance to know their child because of miscarriage or of perinatal loss in the first hours and days of life.
- The mothers who had their plans abruptly changed when they gave birth to a child with special needs and a mothering journey that was not at all what they had expected.
- The mothers who had to make the difficult decision to place their child up for adoption due to the reality or their belief that they would not be fit to mother the child they gave birth to.
- The mothers who adopted babies and children and gave them love and security when their biological parents could not.
- The mothers who mother their grandchildren because the biological mothers are unable to do so.
- The mothers who helped other women become mothers through surrogacy.
- The mothers who unnaturally outlived a child and who celebrate their memory on this day.
- The mothers who temporarily mothered the lost and forgotten children for a few days, months and even years through fostering.
- The stepmothers who love and raise the children who are not of their body but whom they love just the same with all of the challenges and hardships of step parenting.
May all of you feel acknowledged and honoured on this day. To you, I raise my glass.
Originally published in the Whitewater Cobden Sun newspaper May 4th 2011 edition
I hesitate to even write about this and yet here I go.
For the past three years, we have unwillingly witnessed the relentless nocturnal dystonia that has plagued our daughter’s sleep. Each night after enough sedatives to turn a rhino into a crumpled, delicate heap, we place her in her bed and tip toe out of her room hopeful for at least one hour of rest before the spasms start. Lately we were lucky if she lasted 40 minutes. Then the predictable events of the night would ensue. Every 15 minutes, a contorted-twisted-stiff-gnarled body would replace the peacefully sleeping and restful one. I know the frustration that my husband and I feel each and everytime we hear the telltale sounds of yet another spasm attacking her body. We feel a strong urge to put our fist through a wall to distract us from the pain that washes over our hearts. What frustration she must feel to never, ever get a good night of sleep.
We were told there was nothing left to do. We had tried all of the medications and an eeg proved that she was not having seizures. And so for many, many months, we lived in that strange place that is a blend of denial, survival, distraction and self-soothing usually with an evening glass of wine. Seriously. Was this how it would all end up for our daughter?
And then we started to have difficulty with our night staff’s ability to care for her. They were at risk for injury and hiring new staff became impossible. How could we expect someone to walk in cold turkey and hold a spastic, 40lb., lanky child for 6+ hours over the course of a nine hour shift? We couldn’t and it just came to be that having no other options was just not an option.
We invited our dear friend, Jessie, to come to our home and film a night with Meredith. She works in the film industry and knows her stuff when it comes to filming. I am so very grateful for her time and talents in capturing the nightly rituals which were then neatly packaged into a 40 minute film. Next, we requested an appointment with our Neurologist. We were to meet at the end of May but after losing a staff member, we called to be placed on a cancellation list. He saw us last Friday. He watched some of the film and told us he would watch it in its entirety in the days to come. And he prescribed an anti-seizure medication that had been used with some success for this type of dystonia.
We are on day 3 and already we are seeing some taming of the beast. The spasms are not as aggressive or frequent and Meredith is having longer periods of sleep. We are not where we hope to be as we would like to abolish the spasms altogether but even if they can be tamed and soothed, then we have made progress.
As always, we barely breathe a word about any of it. There is fear that we will disturb the beast unwillingly and will be back where we started. We must watch for an allergic reaction and with our history, we know that these things are often short lived. So we live as we have always lived with Meredith. One day at a time. Enjoying and relishing the uplifting moments while always being respectfully aware that all moments are fleeting.
One of the first thoughts that crossed my mind after Meredith’s diagnosis at 5 days of age was “I will never work as a doula again.” So much of my life at the time was dedicated to expectant and new families that the transition from attending 4-5 births per month to waiting patiently at home for the birth of our own baby proved challenging. The fact was, I LOVED my work and I took great pride in the care that I gave to the women I served.
As the days and weeks and then months unfolded after Meredith’s birth, I felt my SELF slipping away right before my eyes. I was now Meredith’s mom. I was the CEO of what I affectionately refer to as Meredith Incorporated. This was a worthy role that I felt privileged to take on and yet, I also felt as though I were lost in this land of mothering a baby (then child) with medical fragility. I also didn’t know who I was becoming. Who was I beneath the schedule, the drawing up and administering of medications, the feeding pump and continuous feeds, the relentless hours of the day and night of holding our girl, the trips to the hospital, the therapists and therapies, the exhaustion and the stress? I not only wondered who I was but WHERE I was.
Prior to having children (healthy or not), we have the luxury of nurturing OUR needs and feeding our passions. When someone asks what your hobbies or interests are you can rattle them off in seconds because you spend your time developing and enjoying all of these things. Having children significantly shifts your focus and for the most part, you do not have the space or time to entertain YOUR interests.
When Meredith was 2 years old, I saw a need in our community and began teaching prenatal education classes. I NEVER intended to teach but I felt it was a way to stay connected to my work that I loved and bring the knowledge I gained over the years to the families in my community. I could not have predicted the positive impact that one evening per week would have on my well-being. From that point on, I attempted to attend births but this proved impossible and so I had to make a decision to let doula work go for the time being.
Over the years, after that initial teaching experience, I recognized how important it was for my mental health to continue to feed my interests and passions. It would have been very easy to let go of everything that I loved that was separate from mothering Meredith. We can literally convince ourselves and believe that we just do not have the time. This may be true especially in the early days or if you are single mothering (or fathering) or if you have zero help with your child.
It is critical, though, for your well-being that you give yourself permission to do so. You may have to get very creative to make it happen. Sometimes we can’t be bothered as it feels just too enormous to make the arrangements and it may feel as though it will expend to much of our valuable energy. The truth is when you take even fifteen minutes for yourself to meditate, flip through a favourite interior designer magazine, create a vision board, get some exercise or whatever it is you miss and haven’t had time for, YOU WILL BE ENERGIZED.
It is really, really hard to get motivated especially if you have gotten into the habit and the round about thinking of “not having enough time.” Perhaps, you are plagued by guilt. The absolute truth is this: You do have time and you deserve that time. Carve out just a little for yourself. This tiny shift can have an immense ripple effect on your attitude, your feelings of well-being, your level of patience. It will feed your spirit in a way that any resentment you might have for the constant caregiving that you do as a parent will miraculously melt away. For example, if you have always had a passion for cooking, treat yourself to a couple of gourmet cooking magazines. Allow yourself 15 minutes of uninterrupted time to sit outside and leisurely read them. Starting clipping recipes of the things you want to try.
YOU are in there somewhere. I know this for certain.
You are not lost indefinitely. You can be found again but you need to seek out yourself and bring her/ him back to life. You are the only one that can do it.
I felt like I had failed you as your mother and my whole body shut down emotionally and physically. All I felt was numbness.But I was there for you.
When you fought like a soldier for your life and we prepared to bring you home knowing our ‘dream’ family was not to be. The guilt was huge for those happy moments we thought we would have but never would.
I was there for you
When that gap between you and your twin grew bigger and bigger each day my heart ached. We had joy from both of you for such different reasons. Louis walking and talking and you eventually learning to sit and roll.
I was there for you
When you attended all those ‘many’ appointments I was right by your side being your voice and your teacher. Also feeling sad knowing you’d struggle your entire life.
I was there for you
When I sat in the car tears rolling down my face after hearing dreadful news from the latest paediatrician or specialist. With nobody to call as nobody would understand.
I was still there for you
When fighting for your needs became priority, even when I doubted myself I was doing the right thing. I continued and won.
I was there for you
When you needed specialist equipment but the funds needed to be raised. When a new wheelchair was needed and I refused to be fobbed off, I called them daily until we got our wish.
I was there for you
When you wake at night with fright or cramps, you scream out and I know it’s my name you call out, even though you can’t talk.
I’m there for you
When you need feeding, bathing, changing, wounds dressed and doctors to be called. Your medicines requested, ordered and picked up.
I’ll be there
When you have a frightening seizure that your little brain cannot stop on its own. It’s frightful to witness but we deal with it and help it stop, bringing you calm again.
I’m always there
When you refuse to drink or eat to the point of becoming dehydrated and losing weight, then admitted to hospital.
I was there
When you needed surgeries and needed to stay over at different hospitals. It hurts you but hurts me more. If I could take all those for you I would.
I’m still there
When you don’t have the ability to feed, wash, or play by yourself, I will be your spoon, sponge and entertainment.
I am there
When it becomes obvious that you are getting bigger, stronger and your needs are becoming more complex. It doesn’t scare me.
I’ll be there even more
Some day’s, mums also need people to be there for them, life can be hard. Don’t blame any parent for needing a quick step away from reality; it’s what keeps us able to keep on keeping on.
Having children is the hardest job ever but having a child with special needs is even harder. It’s constant, daunting, rewarding, relentless, draining, amazing, frightening, and very emotional.
To simplify it; imagine being on a huge roller coaster with no way of stepping off. When you feel sick or get scared of the big dips, it literally never stops to let you catch you breath.
Also the fear you live with daily that that ride will stop at anytime is awful. If/when it does your life will change forever and that is even more frightening than living it.
Written by Tracy Gordon (mum of a child with special needs and a magical smile)