Being that today is Starlight Day I thought I'd share our experience and encourage people to give a little.
Starlight help to brighten the lives of seriously sick kids and their families, at a time when illness, hospitals and intensely difficult situations have become the norm.
Although we wished differently everyday, we knew in our hearts that our son Noah would never be "well". We also had to come to terms with the fact that we probably wouldn't have him with us for long. After that our wishes for our son became simpler. We just wanted him to smile and to know that he was loved. We also wanted to make memories that didn't revolve around medical machines, tubes, therapy and pain.
When we received a call from Starlight letting us know Noah was going to receive a wish we were so excited. We started planning a family holiday to the Gold Coast. Where Noah could swim with the dolphins, visit the theme parks and meet his favorite character, Elmo.
It gave us something to plan and look forward to. Something about the future we could smile about. Our trip was booked for the end of October.
Six weeks before we were due to set off Noah passed away.
A little while after I received a call from Starlight. They had heard of Noah's passing and wanted to pass on their condolences. They also wanted to let us know there was one more special gift in store for us.
A star named Noah.
How perfect a star. Shining on brightly like the memories we will always have and the lessons we will forever keep.
Now when I look up at the night sky at Noah's star (near the Southern Cross) I smile and sometimes make wishes. And today on Starlight Day I wish for all the other families to have the chance to receive their wishes and to see their little stars smiling.
Well it sure has been a while between blog posts. Firstly I want to extend my virtual arms and give everyone a huge thank you hug. The support, compassion and thoughtfulness we have received from our family, friends and people all around the world has been truly beyond words.
I have been keeping myself "busy", but at the same time have felt so completely motionless. For a while I felt like I had fallen into a bucket of slow drying cement and slowly the days were getting harder and harder. The relentless force of time has been knocking at my door, urging me to do what I know I must... go on with life... life without Noah.
The truth is when Noah was here I felt an inner strength. Like I would, and could, accomplish anything. I had gained a confidence about me. I could speak up, speak out and although I hoped sharing our journey could help and inspire others ....I wasn't frightened about letting the words just spill out. When Noah died I knew what I had to do. Our story, that I had began sharing, was unfinished. There were so many things left unsaid. Experiences unshared. Emotions left unreconciled. Things that I felt could bring sunshine to others who might find themselves in the dark places, places I had visited and still frequented often. Things that could also transcend our circumstances and speak to people going about their daily walk in life.
But in the wake of losing Noah I had lost a little bit of that inner strength. I became doubtful that I could somehow even try to share the profound life changing experience we have had. But then I read a blog of a lady just like me. A fellow HIE mum who had lost her beautiful son Leroy. Her blog was titled No Words. She spoke about being lost for words and having none to really express what she was feeling. Her words were so simple yet so exactly what I needed to hear at that exact time. It showed me how powerful one persons true words can be.
And so now I am ready to share...
Starting with a poem that I came across called He Is Gone by David Harkins. These words bring me great comfort and strength as I walk through the door of tomorrow.
For those family, friends and followers of our journey whom may not yet have heard,
Noah peacefully took his last breath this past Friday, September 28th at 11:52am.
He inspired so much in his short 22 months. I am forever grateful...
Children seem to have such a limitless imagination and creative process. I find it so amazing just to watch a child and how they interact. I love to listen to the way they express themselves and the somewhat random, but often philosophical comments they make.
Inside every single one of us is creative potential waiting to be nourished and unleashed. Creativity is something which arises from one’s inner self. It can be manifested in so many different and unique ways. It does not depend on the physique of a child. Even a disabled child can be creative because creativity develops from mind and spirit and not from body.
So how then do you nourish creativity and help a child express what their body is sometimes unable to? And as a deeper thought, how do you keep the integrity of their individuality and causation?
Having fun and being creative is part and parcel of being a kid. Making noise, making mess, silly songs and individual expression ....
Now I am by no means a kid at heart in the sense that I hate mess. I like things to be all organised and orderly. Usually when a child comes along, your world, in this way, is turned upside down! Or so I am told :) I wish Noah could destroy the house, draw on the walls and make mud pies in the lounge room. But our situation is so far from that and in learning how to help Noah just "be a kid" I have to in some ways learn to be a kid again myself. I have to use my imagination to help Noah express himself and interact. This is not an easy feat as Noah is our first child and I have not had a hell of a lot of experience with children. Also Noah's physical limitations are a massive challenge.
I am constantly searching for new activities, toys and materials that will be fun for Noah and allow him to participate in what being a kid is all about. Here are some of the things I have tried so far.
Toys
With a typical child its usually the simple things that seem to attract their attention. Like everyone knows the story of the child who discards the toy and plays with the box for hours. But with Noah finding the right toy can be like finding a needle in a haystack.
Toys with lots of lights, movement, vibration and sounds seem to be the best. Here are some of Noah's current favourites:
This toy library is amazing. They loan out toys, games and equipment for children with special needs. They have a massive range and source many toys from overseas that can be hard to find and quite expensive. And the fact that its called Noah's Ark is a perfect match.
It was here that we first ventured into the awesomeness that is switch adapted toys. A switch adapted toy is basically any toy that has been adapted to work by pressing, tapping or knocking a switch or button. There are many different types of switches depending on the ability of the child. Noah needs a fairly large flat switch that is quite sensitive to touch. Noah has very limited movement in his arms and hands. It is quite frustrating and saddening to constantly have to play "for" your child. Always moving the toys, pressing the buttons and being the cause of their interaction. With switch adapted toys Noah can learn and practice causing his own effects. Here is a video of Noah with a switch adapted Tickle Me Elmo. (We are so in love with this toy)
Another cool toy we like from Noah's Ark is the Textured Carousel Busy Box. It is quite unique and each switch panel does something different. Lights up, vibrates, beeps, makes the balls pop up, plays a really eery version of the ice cream truck song?? Only the slightest touch sets it off and it sits on a spinning lazy susan base. It is a sensory dream.
DIY Toys
I have come across some awesome toys and play equipment that imaginative and savy parents have whipped up. Most special needs toys are super expensive. I guess the fact that they aren't mass manufactured and often have more complex bits and pieces push the cost up. Not to mention most have to come from overseas and so that's a whole other cost to add on. Here is some pics of a DIY "Toy Hanger" I thought of. Its just a basic portable clothes hanger that can be adjusted height wise. We can hang all sorts of things from it like bells, small toys, mirrors, beads, crinkly paper, tambourines, etc. Its all so easily changed too. What I like about it best is that on the lowest height the toys hang just above ground level so Noah can get to them when lying on his back, then I can move it up so its the right level for his Special Tomato Chair and then when in his seat/pushchair I can put it up to suit that too. Noah just has to move his arms and hands a little to get some sort of sensory effect. It keeps him entertained on his own for a short while too which is a huge bonus.
Painting and Craft
Noah recently undertook his first painting masterpiece. We used stamps, rollers, shapes and a canvas so we could keep it as a special memento. Noah finds it very hard to purposely move his arms and his hands are mostly fisted so he cant grasp or hold on to things. So what I did was hold the stamp near his hand and move his hand up and down like he was stamping it all over the canvas. Then we painted his foot to do a footprint. The feel of the paint on his foot got quite a response. The painting experiment was a hit and Noah seemed to really like it. We have since started doing paintings for the whole family.
Another experience we are exploring is using craft like materials. Things like feathers, different textured paper, buttons, cotton balls, straws, glitter, etc. I would show Noah the different pieces and touch them on him. Then I was gluing stuff on paper so he could see. I think he liked when I tipped all the buttons and paper on him.
IPad
Now I think the iPad technically falls under more of a therapy use for us. Noah loves, loves, loves it and so we use it as a incentive for strengthening his head control in sitting and during tummy time. But there is the fun factor about it too. We mainly save clips on youtube and watch these. Noah's favourites are Baby Einstein, WeSee, Super Simple Learning Songs (my fav is Little Snowflake, it is the most gorgeous thing) and of course anything Elmo. Noah's number one favourite clip is Elmo's Ducks, which we do at least twice a day. I seriously sing it all the time, "Oh Gosh Oh Gee....."
Having a child with a severe disability is tough. There are so many things to think of, schedule and research. Days are filled with endless things to do with therapies, equipment, medical issues, funding and on and on. Sometimes its hard to just stop and play. Noah relies on us for everything including interacting with his environment and finding joy in the things around him. And sometimes kids just wanna have fun.
"In order to encourage creativity in others and yourself you must look and listen with your heart and sometimes just be still" - Creative Truths
Noah's Friends From Around The World
As I have mentioned before I belong to an online HIE support group. It is such a source of inspiration for ideas. I thought Id share some of the toys and playthings Noah's online buddies love so much.
Emmy loves pom poms. Goooooo Emmy!
Logan's Mum is amazing, and so creative. LED lights seem to be a hit (Noah loves them too)
Ava and her survival blanket. Look at that smile.
Travis in his Squiggles Stander with his fav toy
Eleanor loves drawing
I love this pic, such an inventive idea to help Joshua when he was learning to crawl
Tara with her Paper Jamz Drums - I'm looking into getting one off Ebay
Look at Charlie's homemade swing :)
Ben shows off his Waterbabies neck ring these are a hit with special needs mums across the world
Mikey's cool wheels
Jaren is an Elmo fan too
Other Resources
Adapted World is a blog I came across that shares the story of Brooke and her family. Brooke was born with Severe HIE, like Noah. Written by her Mum, Erin, this Blog has a wealth of info about toys, adapted and specialized toys, play activities, and a whole host of other fun ideas. You will also find instructions on how to make a ToyGym/Bar like above.
If you have questions about any info I have posted, where to find certain toys, or you have any other ideas or resources you'd like to share, please email me at azzkat@live.com.au
Time is an interesting thing. When you think about it, time is how we live and measure our lives. Yes it’s an arbitrary thing, but we do it all the same.
Times in the past…
Times in the future…
Not wanting times to end…
Counting down the time…
Not enough time to do...
Am I spending enough time doing…
Time spent with…
Time without or apart from…
Which brings me to the Time that I want to write about today. Needing to take some timeout. Time (dare I say it) away from your child!
I mean the kind of time to take a rest, a breath, reflect, re-gather, whatever you need to do to keep yourself balanced and on top of things.
I’m sure that even mothers with healthy children need to take a bit of “Me” time now and again. For us Noah’s care is practically 24 hours around the clock. It is physically challenging and also very emotionally draining.
Love this Manifesto, but if only the needs of our kids were that simple
At first I felt like I needed to be there every moment, as I didn’t know when our moments would run out. I also came to find (regardless of what people tell me) that I am not a super woman! I have already learnt that I can endure way more than I thought possible. Hell I could endure ongoing sleepless nights, constantly watching my child arch in pain and endlessly trying to console him, holding him for hours in the only way he will settle. Waiting for that brief 30 minutes of day nap time so I can run around the house like a mad woman and try to do washing, cleaning, medications, tubie stuff, etc, etc. Never being able to leave the house with Noah by myself. Staying up till all hours getting things done. Only to have to face the same exact things the next day and the next….. But I realized quite some time ago that I would wind up a blubbering mess and not the person I am or want to be. We needed help.
Sometimes I feel a little selfish and guilty for leaving him or having someone else look after him. But taking this time makes me a better mother to Noah and makes me the kind of mother that he needs.
It hasn’t been easy trying to find out what services are out there to help in a situation like ours. But as Noah reaches towards the 19 months old mark we are finding more and more balance. I thought I’d share a few of the things that have made this possible.
Lady Lawley Cottage by the Sea
LLC is an out of home respite centre for children with special needs. Including high/complex medical needs. It is a beautiful homelike and enriching place for children to have some time away from home. There are registered nurses on staff, sensory rooms and opportunity to interact with other children. Lady Lawely Cottage has such a wonderful history and was first opened in the early 1900’s. It has such a nice feel about it and has amazing views over Cottesloe Beach. After going there and meeting the staff we knew it was a place we would feel comfortable having Noah visit. Having said that the first few times were really hard. I still can’t help but call up to check on him. The staff there love Noah. They fight over whose going to hold him first when we arrive J
Original Building at Lady Lawley
Gorgeous view of Cottesloe Beach
Noah stays in the Oceanview Building
Last Kisses xoxo
In Home Care
We now ,only recently, have an amazing carer who comes 3-4 days a week. I honestly don’t know how I managed before. She is awesome with Noah and comes to his hospital appointments, therapies, etc. Things like taking Noah for a walk or in the car were impossible before, as it takes two people to manage it. My last solo attempt at taking him to the park ended in him screaming, shaking and stiffening like a board and me making a dash for home, leaving the stroller in the park (Luckily it was still there when Aaron got home.) Now we are not confined to our house. Yippee! Noah even came grocery shopping for the first time! I feel like a weight has been lifted and I am slowly starting to get on top of things. Now I will have more time to coordinate appointments/therapies/activities/researching ideas for Noah and hopefully will have more time to share things on Noahs Ark too J
Kalparrin Mothers Camp
Kalparrin organises a range of respite events for mothers, fathers, couples and other family members. Enabling them to take a break, connect with old and new friends met, who have similar stories and can understand what its like to have a child/family member with special needs.
One of these such events is the Mothers Respite Camp, which is held twice yearly. A few weeks ago I went on my second camp. It was held in a "rustic and rural" setting an hour and a half out of Perth in a gorgeous little village called Fairbridge.
Our group stayed in Middlemore Cottage
The weekend included a huge selection of activities to choose from including: massage, reiki, foot reading (this was really fun), chakra balancing (this saw a fellow mum and myself giggling and sneaking out the door, as we couldn't control our laughter. We were trying to follow along, but then the instructor told us if it "felt" like our partners chakra was sticking out too much to take our imaginary duster and dust it away?!? Ah you lost us there.) There was also journaling, crafts and even a flying fox! As traditional there was decorating tables, dinner, DJ and dancing, with this years theme being All things Magical: Fairies, Witches and Wizards. After dinner there is a big raffle held. Our table had lots of luck and I myself ended up with three prizes!
The experience of Kalparrin Mothers Camp and indeed Mothers/Parent Groups all around the world cant be underestimated. Swapping stories and info is so invaluable, especially in the highly stressful and often confusing world of having a child with special needs. Spending time with these lovely ladies gives me a sense of feeling fantastically normal and also totally understood and acknowledged in the path I have to face. I am already looking forward to the next Camp where my superhero mummy friends and I can talk, listen, learn, laugh, cry, eat, drink and take a bit of time.
It is said that time changes things or somehow makes them better, but in my experience you actually have to change things and make them better yourself. Easier said than done but I am working on it…
When Noah was about 7 months old I heard about an organization called Heartfelt. "Heartfelt is a volunteer organisation of professional photographers from all over Australia who have come together to form an organisation dedicated to giving the gift of photographic memories to families that have experienced stillbirths, premature and ill infants and children in the Neonatal Intensive Care Units of their local hospitals, as well as children with serious and terminal illnesses"
I had wanted to have some professional shots of Noah done but I didn't know if a regular photographer would be comfortable or be able to work within our circumstances. I contacted Heartfelt and that was when we first met the lovely and talented Deanna Whyte, from Deanna Whyte Photography. She came out and took some amazing shots. I have posted some of them on Noah's Ark Facebook Page. They came presented in a beautiful folder on disk and some printed. The cost is completely covered by Heartfelt. This is such a gift to us as we could never afford a session such as we got.
These are some of my favourites
I asked Deanna why she had volunteered her time to Heartfelt and she told me of her sister who had a baby girl born with HIE (same as Noah) at birth who sadly passed away not too long after. In that time she, being a photographer, took many precious photos of memories they would have forever to remember her by. She wanted other people to have the same special memories. She was so sweet and amazing with Noah.
Just before Noah's recent surgery I wanted to have some more photos done. Noah's condition was worsening and we weren't sure how things were going to go. I was overjoyed when I learnt that Heartfelt could offer us another session with Deanna. And this time Nanny Dot was here to join in, which was special. When I received the photos I looked through them and just cried and cried. I loved them and I knew no matter what, I would always have these memories to look back on.
This is my favourite photo from the session and indeed my favourite photo of all time. It is so special to have a photo of us all smiling, as Noah does not smile that much.
The last thing people are thinking about when they have a severely at risk child is professional photos. Sure there are usually all the hundreds of amateur shots taken by parents, especially when a baby is first born. But some of the Heartfelt photos I have seen have literally taken my breath away and brought tears to my eyes with their beauty. I can remember being in the NICU and everyday with each new photo I took wondering if it would be the last. For some parents photos are the only thing they take with them to remember their little angels. It's for them and the people who have to live wondering if this photo will be their last that I want to help spread the word about Heartfelt and the amazing gifts that they give families.
I thought I would add a couple more of my favs from our shoot. I will be posting the Album of our session on Noahs Ark Facebook Page soon.
Two months ago Noah turned 1! I can’t believe how fast the time flies by. So fast that I am always writing my blog posts so far behind the fact J
There were definitely lots of mixed emotions celebrating the 1st Milestone.
There’s the “A Year Ago Today club” which included things like “AYAT we had our perfect natural birth plan and had never heard of such things as HIE or hypothermia cooling protocol and were eagerly awaiting the arrival of our first child” then “AYAT Noah was on life support just hanging on” and “AYAT Noah started breathing on his own and we had so much hope” followed by “AYAT Noah had his MRI scan and it showed extensive brain damage” also “AYAT we were told that Noah would most likely not make it to his 1st birthday” – it is a really tough thing not to think back at what was happening 1 year ago. That’s what birthdays are for, right? To look back and celebrate the person’s life and the memories and the milestones made along the way. Oh boy is it tough to see all the babies around me growing up and starting to crawl, eat, walk, talk and so on. But you know what? It is getting easier J
But also (as I mentioned in my previous Blog post) at this Milestone I am looking back and seeing just how much I have learnt. About Myself, my Husband, Our Amazing Family and Friends and about what it means to have a child with a severe disability. Now don’t get me wrong I am far from being in a state of serenity, but I feel I have really had my beliefs and personal strengths put to the test, and I’d like to think, that so far, I’m making the grade.
One of the things that has really helped me (which I have spoke of often) is to try to focus on the HERE and NOW and just take the next step. Now of course from time to time things are going to put my mind into worry mode about what happened in the past and what the future will bring. But the key is to try to bring my mind back to NOW. It doesn’t mean to just not confront the situation or pretend everything is fine. Obviously there is a time and a place to address these issues and get it all out. I came across this quote and it spells it out nicely. “Worrying does not empty tomorrow of its troubles, It empties today of its strengths”.
But now I have gotten off track.....
The day of Noah’s 1st birthday party was a great day. We went with a Noah’s Ark/Jungle Animal Theme. I dressed Noah up in his "big boy" shirt and he had a Birthday Boy badge, so cute. Noah was even lucky enough to have a visit from Nanny Dot for his birthday too!
I searched for ages to find either a Noah's Ark cake (too expensive) or a cake topper I could put on the top of whatever we went with. I found a lovely lady in the US who custom makes cake toppers. There are so many themes, and they are so bright and colourful and very well made. I was so happy with the topper. I will definitely be using and recommending her services. Her website is: http://www.kharygoart.com/
We had some yummy food (thanks to our awesome friends who helped out), played pass the parcel and Noah got lots of great gifts and money to go towards his iPad. Noah even got to "cut" (smack a donut off) his cake :)
Thanks to all you wonderful people for making Noah's 1st Birthday Party a special day xx
I am the type of person who likes to share the good and I don't often dwell on the past or share feelings of sorrow. As Noah's first birthday draws upon me I do find myself looking back and thinking of what I was doing. Blissfully unaware of what was to come. Writing this Blog has become a way that I can share my thoughts, feelings and experiences. Sometimes it helps to just get it out. Thanks for listening :)
This time last year the early signs of labor had started and I was enjoying a home cooked meal my husband made :) Excited and nervous with anticipation to meet our little 'Baby Reed'. It feels like a lifetime ago but it too sadly feels like no time at all has passed, as we have been stuck in a sort of 'limbo'. With Noah not really progressing at all and starting to show more signs of the outcome of his birth injury. Not knowing if the latest temperature, infection or respiratory trouble could send us down another path.
I guess in the course of life things happen to us that are not of our choosing. There are times when we are not sure where to go from here...or what to do. Sometimes the news we receive can change everything so completely. The world around us seems to go on without realizing how much our hearts can be breaking...and without taking into account how helpless we suddenly feel. Life has a way of teaching us lessons we didn't necessarily want to learn...and giving us tests we never planned to take.
And what a test the past year has been. I have come to realise that the things in life that can bring you the most joy can also, on the other hand, bring you the most agonising heartbreaking pain. It's just the way it is in life. There are no immediate answers to the "whys", that we ask ourselves when trying to deal with this type of tragedy. "Why did this happen"? "Why Me"? And even if there were maybe we wouldn't understand them.
In the past year I have learnt that I can be amazingly strong, that I have a whole other area of myself that I can love with, I guess I'd call it unconditional love. I have always believed that a person is more than their body. That they are a spirit or soul or whatever you may call it. Noah's body may be broken but his spirit is so strong and it shines through. It has taken me a while to look past what I can see and the "complexities" of Noah. And I think because there was a high possibility that Noah wouldn't make it to a year I couldn't let myself love him too much. But somewhere along the way that changed and although I may still lose him I am not living as if "today could be the day". I am taking each day as it comes, which has got to be the single most simplest and best piece of advice I have taken on. Some days are good, some are bad and some I just feel utterly destroyed. But each day is a new day and I am learning that it is not what happens in that day that I can necessarily control or choose, but I can choose how I react. And I choose to focus on the positive and be brave and determined and live and laugh and take one day at a time.
I have come to realise that the man who is my husband is so much more amazing than I could have ever thought was possible. Strong, understanding, encouraging, tender, compassionate, selfless are just some of the words I could use to describe what a truly wonderful person Aaron is, and has always been my best friend and never has that been more needed than in this past year.
Well its now about the time exactly when 1 year ago our lives were changed forever.
Happy 1st Birthday Noah, we will face a new day with you with love,courage and admiration xoxo
