It is not uncommon to find us with hats and sunglasses on at six o'clock in the morning. It will be dark and we have the lights on but Faith will say 'mama hat' or point to the hats.
Faith's fascination with hats begun a few years ago when we were on a picnic with family. We were reading a book about Play School and looking at a picture of a blue hat with a yellow flower on it and then there was 'hat'. Hat is still the favorite object and word.
Faith loves hats. If you want to make her smile, wear a hat. Today when she went for a walk with her grandparents and they watched tennis, she apparently became quite offended when the boy playing took off his hat.
The most serious argument at our house is 'mama hat' 'da hat'. The answer isn't always yes and there are tears. Faith's big blue eyes well up and out come these huge tears that she carefully wipes away.
All things hats make Faith happy and at times help her make new friends.
I must admit I am the one to blame as when I was young I had a big collection of various shapes, colours and styles of hats.
Next time it's raining and overcast spare a thought for those of us wearing hats and sunglasses inside. Enjoy you day!
Monday, 23 March 2015
We wandered in and it was one of those moments where there is complete acceptance and kindness. The organiser of the event welcomed us with words of encouragement and thankfulness for us attending. When it was us that were thankful for even considering helping us in raising money for Faith's wheel chair. When you have a child that is unwell a lot and you receive many questions sometimes challenging ones from strangers it can be confronting, but here, it wasn't. There was care and genuine concern. The words were ones like "what is this little one's special need" or "doesn't she look good for what she has been through" or "doesn't she have lots to say" when they can see she struggles with speech. There is so much good in people, in strangers that become instantly friends. I met some dear people that day and even though I might not remember all their names I will never forget the kind words and encouragement. It is those moments tears sneak up on you with such gratitude and love. Sometimes that is all you need to press on.
If you want to check out the event here is the web address The Board Meeting
Tuesday, 17 March 2015
What battles to fight? That is the question I am always asking myself? When to stand up and when to just let something go? Isn't that something we all struggle with. When some unjust deed is done to us or we see someone treated unfairly or perhaps someone is struggling and we do nothing. Do we stand up or do we place it in our too hard basket by not wanting to become involved or cause conflict. I dislike conflict and I want to be liked. I am learning to be liked does not always achieve what is needed.
Not long ago, a man is in a power wheel chair going along the footpath and you see him struggling with a branch fallen from a tree. He cannot go around the fallen branch and so he struggles. It is a busy road and not one car takes a moment to stop and ask if he needed help. Maybe he was fine and wanted to fix it himself but just maybe he needed a stranger to stop and ask the simple question of whether he needed help. Are we ignoring our community too much because of fear and conflict.
Today, we enrolled Faith in swimming lessons. We were invited to a private class by another mum and eventually the teacher was open to the idea. It would give Faith the opportunity to socialize, watch how other kids learn and be in a group with two other little girls. All important concepts to learn.
Eagerly Faith points to her floral pink swimmers asking if it is time yet. The indoor pool area is humid and on entering I feel the need to swim to relieve the heat. Faith points at the pool and starts asking to go in. The water is cool and refreshing. There are parents sitting by the waters edge with their little ones splashing around. Faith was so eager to enter the water but now she is overtaken with shyness of her surroundings and new people. The class is made up of Faith and two little girls it is full of fun - singing, learning and loads of splashing. Faith mainly observes the lights, the balls, the boards and the kids. She takes an interest in one of the little girls hair clips. She points at them and smiles. Afterwards as we float around relaxing before we force ourselves out of the water I peer at Faith and her blue eyes are bright, alert and happy. What a good note to end on. We head out of the water.
On leaving we are discussing the next class with the office staff and we find out that Faith is only able to attend this terms lessons as it is a "private class" and the class it capped at two. It is a council run facility to benefit the community. I explain that the other two mums are happy to have her and the teacher seems happy. But no that is not how they work. Two ladies stand on the other side of desk friendly but not resolving anything. Other classes have four in them but because it is listed as a private class there seems to be no avenue around it. I am torn. I try and resolve the issues but they don't seem interested or is it unable? I explain that we are not looking for extra assistance but just for Faith to be in the class. We are paying customers and still they don't seem interested. Yes, I could just take Faith to the pool but it is the group session that is beneficial and being part of a group. Seeing other kids and how they do things. She just wants to be included and do something normal. Having one on one classes have their use but this is to help her learn in other ways too. I explain this. At first, I was angry but then the disappointment that yet again it isn't easy and everything feels like a battle.
But what if I didn't do anything all the time? I would just be a doormat and I wouldn't be happy. But it is also important to pick the battles and choose them for the right reasons. Peace is the best choice sometimes. I know I have to be completely happy with my decision as if I am not I will have that horrible feeling in the pit of stomach telling me I did the wrong thing or was it something I ate?
So I took a step back and thought about why I wanted Faith to have these swimming lessons and what she would achieve in them. I just have to choose a reasoned and calm approach. I might not always get my way but I do my best for Faith and hope others can see that too. It can be challenging choosing your battles.
Tuesday, 10 March 2015
We are sitting in a semi circle. The air is heavy. The music is playing and the kids of all ages are shaking bells and egg shakers. Babies are crawling around investigating everything. Mr nine months is bopping to the music occasionally sucking on his instrument. I offer Faith the egg shaker and she usually picks it up and drops it. I then catch it and we play this game over and over. Each week at music group I encourage her to hold it and shake it but she smiles and drops it. Her strength in her hands limited but improving. But today, the momentous day, she holds the egg shaker and shakes five or six times. A deliberate shaking action. Shake shake shake in time with the music and she drops it. She looked so proud and satisfied. For that moment, I didn't hear the music or the kid smash the bells into many pieces and the babies crawl towards the many shattered pieces I was soaking up this small, no HUGE victory of progress. I wanted to shout to the world, "my girl did it, she shook the shaker and didn't let go".
Each and every day I marvel at the beauty and ability to hold a pencil, feed myself or hold the hand of my son and daughter. I can turn the page on a book, type on this computer and my fingers just respond at my command. Every moment is a gift and every success whether big or small is a victory and worth telling the world.
Whether or not others found this interesting, it was all I could talk about or think about all day. It made my day glow with happiness. What made your day glow with happiness?
Thursday, 5 March 2015
One of my favorite sites is Literary Mama. They have shared my story about how I found my writing again. I'd love to share it with you.
I had no idea what lead me to this moment. I was searching for something through time and space but I couldn't find it. I sensed something was missing but didn't know what. I wanted more but of what? I had immersed myself in motherhood and being a stay-at-home-mum and though I loved it, I occasionally longed for my past freedoms. I needed to think about something else. - Continue reading (click here)
Tuesday, 3 March 2015
In the past I have found it hard being part of a playgroup. There have been many reasons I have backed off after being involved a few weeks. At first years ago, it was because I felt we didn't fit in and I struggled to see the other little girls progressing when Faith was struggling so. The pain of the 'what ifs' take time to heal and I had to search deep within myself to seek the clarity of mind to find acceptance of what I could not change. The pain is still there but I have learned to embrace the difference as holding onto unrealistic dreams and expectations was not helping the situation.
I tried taking Faith to a playgroup 12months ago and she didn't want to go so I left it waiting for another time and place. Faith has come so far in the past year and I decided to jump in. She was more than ready this time. I have been taking her to a playgroup for four weeks now. I don't struggle as I once did, I am challenged by something else.
I don't know how but each week after playgroup I end up in tears. No one is mean on the contrary they are accepting and supporting. Of course it happens in the privacy of my car or the hidden space of home while the children play at a safe distance so as not to see my the tears. But even if they did see my tears which they have, it is ok for them to see me cry because it is ok to admit I struggle. I am not perfect.
I ask myself, why this happens after playgroup, I realised today. I am sure for any mum it takes effort, motivation and perseverance to pack up their kids, morning tea, clothes and go anywhere.
My biggest fear today was turning up at playgroup only for Faith to vomit again and again. Vomit is such a horrible word, it conjures such a vivid image in my head and I don't particularly like it. I would probably rather say throw up or sick. It sounds less intense and gross. Faith vomits from her brain condition, so it is something she cannot help and the measures we have taken have lessened it but it still hangs around. She did manage not to vomit until the end of the program.
Each week I question myself, should I go? Should I take Faith? Is it worth it?
I then remind myself how much darling Faith loves the music, singing, interaction and making new friends. She has learned she should hold onto the musical instruments rather than dropping them onto the floor. Even if she is sick she continues on enjoying what is going on around her. She usually wants to stay but it is me who is ready to go home.
I often think about how it looks to other mums watching another child vomit. I know my mind is saying please don't judge me, it isn't contagious. It is just Faith. I feel embarrassed with the vomit. Even after years of it, I still dislike it so much. I feel self conscious. I ponder whether other mums wish we didn't come as it is in the too hard basket and we are more of a burden than others. I feel we are too needy and there is nothing I can do about it. I feel helpless. So, I go home and cry because it has been hard, wiping my daughters face removing the vomit.
My only thought would be that perhaps the next time you see a mum struggling with their child, ask them what can you do? Because I am sure there is something, even if it is just the offer of help. It would mean the world.
Then I recover and remember, the smiles, the joy, the singing and how going has helped Faith grow. Just taking a chance that one little step will make a difference.
Sunday, 22 February 2015
I thought I had it all worked out. The baby arrives, along came sleepless nights, play dates, play groups, breast or bottle that was what I thought was the big important topics for me.
Instead after my baby was born I was expressing breast milk while my baby lay in intensive care, play dates for a while were traded for sourcing funding and equipment, therapies and dealing with on going infections and cleaning up vomit many times a day, every day for years. Motherhood wasn't what I expected but I love my version of it and though I wish at times it was easier I have learned to embrace my own 'normality'.
My perfect little girl has been worth every tear cried and milestone missed. She has enriched my life by:
- teaching me about empathy
- the power of reaching out to others
- being able to connect with other special needs mums
- a different kind of caring for others
- learning how to demonstrate kindness and compassion through a kind word or action
- helping and giving has brought on a whole new meaning for me as I have been on the receiving end so many times.
- Learning to really listen to others
- and the the very hard lesson of being patient.
Compassion takes it form in so many ways and looks different to each one of us.
What does it feel like or look like to you?