Monday, 4 March 2013

Weekend and amazing friends

Sunday early morning

Regretted having that second glass of wine when I woke up for my middle of the night wAke. Awful headache and feeling awfully sorry for myself. Couple of Panadol and plenty of water and I was feeling a little bit better. Hate these middle of the night wakes and would love to stop them. I laid awake for hours next to my little man, thinking. Worrying about his future. I have to try to stop myself thinking about it because its so overwhelmingly sad that when I go there its hard to come back. I then find myself sobbing next to him while he sleeps instead of enjoying how good it is to have him next to me sleeping.

Sunday day

We had a visitor today. A very special one. Throughout this journey we have been blessed with beautiful people in our lives who have helped us along the way and supported our family in anyway they can. Often these people we had not met until we began this journey.

Today we met one of those amazing people. A Beautiful man who has followed our journey since the beginning and has been a constant support via emails and messages of encouragement. He has spent time researching treatment options and taken a personal interest in our sons journey. We are so grateful to have finally met him today and his beautiful son.

He was every bit the wonderful person in person that I expected him to be from his emails. A gentle giant, clever, thoughtful, warm, kind and generous.
Very grateful to have this person in our lives and so happy to have finally met him in person.

Jayden of course was in his usual nudie form and didn't wear an ounce of clothing for the whole visit or rest of the day. What a fabulous way to get around really. Too bad us adults can't get away with it.

I read recently in a book the following words ;

"People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their beauty is revealed only if there is a light within".

These words resonate so clearly in our lives. we have been helped and supported by people with a light within. true angels. We are blessed with people like the wonderful man that visited us today and many others who have stood by us and helped in anyway they can.

one person who also stands out in my mind as i read this passage (as many people who have helped us do), is a woman who was not a close friend of mine before this nightmare began. I knew her only as a mum from school and spoke to her on occasion. She became my friend by making it her business to help us out in anyway she could and her loyalty as my friend has not faulted since. I like to refer to her as my " amazing friend".

My amazing friend first connected with me through my blog and went by the name of 'research nut'. With that name I had assumed they were a man, a fella spending a lot of time in front of a computer. We messaged back and forth about other treatments for Jayden and she made it her mission to seek out a proton beam centre that would treat Jayden as there isn't one in Australia.

We were doing our own research as well and sending copies of his MRIs and notes all over the place but we didn't have the time to put the hours in that my amazing friend did. She spent hours in the middle of the night talking to and emailing doctors and specialist overseas to find a centre that would take Jayden. She also was able to make contact with another mum who went to the states with her daughter for similar treatment and found out about the MTOP application. This other mum was to also join her in the title of " amazing friends". Together they organised a bucket load of things that we were unable to do from a hospital room. In this time I could name several other beautiful people who also helped and became " amazing people" in our lives along the way to get to Chicago and of course the Perth public-all amazing people.

Eventually this amazing friend made herself known and came to visit Jayden and i in hospital. I will never forget how surprised i was when she arrived and i saw before me a mum from school, Nadja. I know I cried and I know I had never felt so in debt to someone as I had to her as she truly moved mountains to find the treatment centre, Procure.

She did not stop there either. She kept in constant contact with us while we were in chicago, continued to research centres for treatment for Jayden should we need them And a day never goes by where I don't get an email from her or text to see if I'm ok. If I'm not, she's onto how to help.

I don't know that there are many people like her, truly she's very special. She has small children of her own, so she's busy as well with her family but still makes the time for us. She understands that sometimes I'm not up for talking and waits for when I am. I know she feels helpless sometimes when she can't help but it doesn't stop her trying.

There should be some kind of medal for this type of friendship. She certainly deserves more than just my friendship.

I know I've talked about how lonely I am often. I am. Lonely in my pain. But Nadja and other special people are there around me ready to listen. Sometimes I can talk to them but sometimes its easier not to.

I just wanted to make mention of this wonderful friend in my blog today as When I began it by talking about the man that visited today I kept thinking about Nadja. The two of them have also become friends as they have emailed back and forth throughout this journey concerning treatment options and what's available out there for Jayden. Together they have found information, research we just didn't have the time to do. So just really wanted to talk about her as well.

Anyway back to Jayden.

He never had a nap on Sunday and by the afternoon he was quite unsteady on his feet. I hoped the lack of a snooze was the reason for it but of course i was panicking inside. Unfortunately he also had a late night and was extremely difficult to get to bed. in fact he had one of his major big tantrums. They don't happen too often but when they do its not nice to witness at all. In fact its quite unsettling to witness as its completely over the top hysteria that can last for sometime.

During these episodes he's angry, upset, and crying all at the same time. he cant say exactly what he's upset about only that its everything. by the time i managed to calm him down he fell asleep while sobbing. awful. i felt so bad.

Every time i see him do this I cant help but think when its happening that its not normal. I've not seen that kind of tantrum in either of my other kids and a big part of me wonders if it has anything to do with all the treatment he's had in the past year.


Today i woke to my little man at the very edge of the bed. Im so use to him being squished next to me that when i woke and he wasn't there i panicked. looking again i saw him at the end of the bed and i gently picked him up to be closer to me and of course that woke him. but unlike myself he was grinning from ear to ear even though he was woken. I just love this little man so much.

My friend Nadja came to visit today with her children and we went for a walk to the park with the kids. its so nice to be in Her company. I know she really cares and that's very special. She may not understand what I'm going through but I'm learning that sometimes just having an ear that really listens is so important.

After she left Jayden and I went for a walk with me pushing him in his pram. He was tired as normally he wouldn't sit in it for any length of time but today he didn't want to get out.
He's had a big couple of days and as I'm writing this he's sleeping soundly.

Everyday I have with him I'm so grateful. Somedays are certainly much harder than others. I still can't find a place in my mind where I can truly relax, I don't think there is that place. I still can't find that place where I can truly enjoy myself unless I'm with my little man and other children and even then I'm always worrying. I'm constantly worrying about him. every smile i get, every laugh i get from him I cant help but have that awful feeling of sadness in the back of my mind that i may lose that one day.

I try so hard to lead a normal life but there truly is nothing normal about this heartache, this life. I wish i could laugh again like i use to without fear, without worry. i wish i could enjoy my days with my kids without that constant worry of the future in the back of my mind. be able to talk without wanting to cry.

I know this is my new normal now but I so wish it wasn't. I wish I could hear the words "your son is cured" but I know no one can say that.

There is truly nothing easy about this journey, no day is easy, no day goes by without pain.

I am grateful for everyday I get though and i never forget that And i hope with all my heart that I get a lifetime with all my children.

- Posted using BlogPress from my iPhone


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  2. What a lovely post and how wonderful to hear of how you and Nadja became close. It is amazing how people step up to help when they are needed, she is such a one and I have had many of these angels to help me too, such selflessness is so admirable!
    On the topic of tantrums - yes, Gavin for a long time would have quite frightening tantrums, and it was very difficult to get him to calm down. And also worrying that he would hurt himself while in the midst of it. I cannot say that it is due to treatment but I suspect so - not only what their bodies have experienced but the lack of control that they've had over their own destinies, having so many horrible things to endure when they are so little. Luckily, as Gav has aged his tantrums have lessened, now he is open to logic a little more. He is still very emotional and when he begins to "lose it" he needs a good cuddle with mummy and to be shown lots of love and understanding, when I am short-tempered with him it makes things much, much worse. Of course, after their treatment they tire so easily too and have to be well-hydrated at all times. We notice that when Gav gets weepy he often needs a drink. I may have said all this before, please forgive for repeating myself!
    Balance is another thing that goes with tiredness/illness - right now we are on the tail-end of another vomiting episode and hospital stay, not easy to be back there but nice to have our neurosurgeons dismiss it as viral and to be discharged. Now my little man is weak and wobbly, it will take a few days to get back to where we were. Sigh! Unfortunately these are our realities now.
    I know that voice of worry in your heart - I hope time helps it to become a little quieter. Hugs!