Believe in yourself

Each day holds goodness. I just need to see it. It might be a new word or a new strength. This time it was revealed in Faith's speech therapy. The speechy and Faith play various games. This includes using her iPad. Faith's mouth opened wide saying 'I'. She is yet to master 'pad' but with help from the speechy, she can. It has different games that Faith loves. They were playing a hair dressing game. Faith would wash the man/woman's hair, blow or towel dry it, colour, curl, trim or lengthen. So many options. She was shown how to use the game first and after a short time understood how it worked. She just couldn't get enough of it. 

I must confess I often underestimate Faith. More and more I am seeing more of her personality. She is a little girl who at times struggles to help us understand her meaning. Her communication is improving and excitement grows in me looking at how far she has come. Faith desires activities to match her developmental stage not her fine motor skills. We need to find ways and toys appropriate for her. Perhaps even one of those dolls that she could learn how to do its hair so it relates to her new game. This afternoon we were looking through some colouring and sticker books and I offered Faith a crayon. She took it not realising she needed to hold onto it to draw so she dropped. We repeated  this process and with me guiding her hand, she made a scribble. What a positive achievement. She is blossoming in the search for her self.

Becoming a chatterbox...and singing

About 15 weeks ago, our family started to raise funds for Faith's speech and physiotherapy. It has been hard asking family and friends for money as for so long we have managed with grants and the like but this time we could not sustain the cost. So with apprehension we designed a flyer and promoted it. We feel so blessed with the response we have had. Because of it we have been able to have weekly speech therapy for more than 15 weeks.

It is as we have opened a box with words and sounds spilling out.  And of course Faith's frustration of wanting to communicate more than she can leading to frustration tantrums. All part of the learning process. Faith has progressed faster than we anticipated. Firstly she started learning to use Proloquo2go and as she does, took to it speedily. Proloquo2go is a symbol-supported communication app that gives a voice to people who cannot speak. For Faith it helps her speech, allowing her to communicate her needs and wants while she is learning to speak. For example, she can touch pictures " I want bed/sleep" I want food/hungry" "I want to do things". It gives her more control and confidence. It gives her the opportunity to chat and explore. She zooms around the iPad with ease. I had to lock many features on the ipad as she would surf the internet, wander in iTunes, head to sites related to Peppa pig and watch Play School. She did delete Proloquo2go before I backed it up too! I learned my lesson.

The speech therapist comes once a week for an hour. The speechy and Faith have become good friends, Faith loves hanging out with her. They play loads of games. Learning is fun Faith has discovered. Walks in the garden, tumbling the compost, playing ball in the standing frame and many other activities.

A few days a go while on our way back from the park, I heard this sweet lalaa arrr coming from the back seat. It was Faith. She was singing. The singing continued for a few minutes with her saying 'hooray' at the end. It was beautiful hearing her singing. What a sweet little girl she is.

Answering a friends question

She asked 'what is your new normality?'
I replied 'It is many things'.

Someone asked me the other day how I was coping or managing having a child with special needs and a new baby. I said we were finding our own "new normality" and she asked what is my "new normality"?

It is many things. 

It is experiencing life through different eyes. I am seeing a lot of things for the first time even though this is baby two. I feel as I have been given a gift that I wished for but thought I'd never have. Sometimes I feel this gift might disappear or I wake up and it is a dream. I feel so blessed to have baby 2. 

Before baby 2, I was living and breathing a life with a child with special needs. Of course, we had fun in different ways and we would find joy in that. It was like it defined me - fundraising, appointments, tube feeding, sickness and therapy sessions but it doesn't.  I was letting it define me. I should not have. I'm still who I was before I had kids. Now, I hope, to have grown, changed and found strengths inside me I did not know existed. Now, I am in places I would not have been and made friends I would not have made. I still do all those things but now I have a five month old baby boy who I held not long after he was born and took home with 3 days after he was born. Two worlds have blended together and I could not be happier.  By having a non complicated pregnancy I saw how it should be or perhaps how I wanted it to be, I experienced something new though full of apprehension on the safe arrival of my precious boy. My husband and I are enjoying both children and their steps forward in life. 

Time to try freedom!

Life is crazy busy. The reason I started this blog was an outlet for my mind to process my life with a darling daughter with special needs. For many reasons I have not been here but in the last year has been crazy with a huge amount of activity

 - Faith turned four.

- been out of hospital for over a year.

- gained weight. 

- become a big sister.

- taste food again for the first time in over year. It's a beginning.

- be regularly well, though those pesky UTI's are still around but better managed.

- start a support campaign to raise funds for Faith's therapy. 

- Start weekly speech therapy and continue with regular physiotherapy

The biggest moment was when Faith tried a motorised wheel chair for the first time. For a long time I lived in denial of Faith needing a wheel chair, of course, I knew she could not walk but I always hoped. Hoped for more. I still do. BUT, you know, when I saw her in this wheel chair, my heart melted. All the apprehension disappeared. For the first time in her life my little girl was independent - it was her "first steps". No longer was she a baby but a little girl longing to explore the world and see it for herself. Explore and not rely on others for everything. First, she went round and round hooray. The look of glee on her face. It sparkled like the stars. Happiness. The therapist took her out into the hallway and she took off - zooming down towards her daddy. Something beautiful seeing our little girl discovering freedom. Freedom brought on a whole new meaning. Faith as yet in unable to sit up or crawl so instead of being stuck in one pace given activities she could make choices of where she went and what she did. It brought her freedom from reliance on others.

Now we wait for another trial of the motorised wheel chair for her to again try her freedom...