Thursday, October 25, 2012

One of " those" days!

So today is one of "those" days. I feel very emotional and very sad today and not at all like my usual self.
Today my beautiful friend should be celebrating her daughters 9th birthday and instead, she is grieving because today is the first birthday Ali isn't here to celebrate with!!! It breaks my heart.

That, coupled with the fact that I got the phone call from school yesterday I never wanted to get. Caitlin had a seizure at school. For those of you that live with epilepsy on a daily basis, you are probably thinking "what's the big deal." We don't live with epilepsy every day and have only had half a dozen seizures in her life but they have all been big ones, that have been difficult to stop and have gone on for hours. One time she ended up on the ventilator to try and stop it. So, when I got the call yesterday, I went straight to panic mode! Thankfully, she did stop herself after a couple of minutes.
It was a complex partial seizure and once she had stopped, she then proceeded to vomit for the next few hours and was really distressed. I had to drive home on my own with her in the back of the car vomiting a number of times. I took all of the back roads because I knew that my eyes would be as much on her as on the road and with the precious cargo I had on board, I wanted to get them all home safely.
I drove very slowly but I was a nervous wreck the whole way. We did get home in one piece though!

It does feel a bit like this year just isn't our year with Caitlin. She has had a really tough one and her health has really suffered. My fear is that this is a sign of things to come and that her little body is just going to find it harder and harder each year! We are approaching the puberty stage so I know lots of kids struggle with this and that's not just the kids with special needs. Maybe there struggles are different, but they all struggle through! The large majority come out of it at the other end just fine so that is what I've got to keep into perspective. I know Paul has these same fears, he's tried to tell me about them but I always shut him down as quick as I can. I think it's a denial thing, if I don't hear it out load, it won't come true. Not just that but I do think its really hard to hear these fears about a person you love more than anything else in this world. I don't want anyone talking about any of my babies like that - it hurts too much!!! So I chose instead to write it down and not have a discussion about - just put my thoughts and feelings out there.

I think Ali's birthday coupled with Caitlin's seizure has got me feeling a bit pissed off at the world today, some days it all just seems so incredibly unfair on the little people who have done nothing but bring joy and love into this world, and I guess if I'm going to be honest, it has me very frightened. That "what if its me one day" thought keeps popping into my head. What if I'm the one celebrating Caitlin's birthday without her. I couldn't bare it, I wouldn't want to bear it. So I guess today I have to think of Ali but then also remember that she has taught me to love and appreciate every moment I have with all of my kids and not just Caitlin cos I have four beautiful, completely irresistible babies who I love more than they will ever realise.

So, on that note, I'm going to go now and not worry about the stupid, mundane things I get caught up in, like dishes and mopping floors and today, I'm going to honour Ali's memory by spending good, fun, quality time with my kids because I can xx

Saturday, October 13, 2012

So, I've just finished reading what I wrote yesterday and it got me to thinking, I've talked about how hard it was and have neglected to talk about the good times, is that because when I look back all I see is a negative experience - MOST DEFINATELY NOT!!!! And it also made me wonder, have things got easier over the years - yes and no.
I wanted to start by saying the early years with Caitlin were hard, not a question but were they bad, no they were not. I had the most divine little baby who, once we got her medicated for epilepsy and let her brain settle down, was the most loving, most giving and most adorable babe I had ever seen (well that was until the arrival if Grace, Tom and Molly. I do have to say my kids are all VERY cute.)
Legs and I made a very conscious decision that we were going to live a " normal" life. We were not going to let Caitlin's Cerebral Palsy define her as a person or us as a family. We were going to let her experience as many things as we possibly could and we were not going to use the excuse that is was "too hard" to have a go at anything.
I think falling pregnant with Grace so soon after Caitlin was the best thing that could have happened to us. Grace put everything back into perspective for us. She stopped us just focussing on the CP and allowed us to experience the milestones and achievements of an able bodied baby. She also made us realise that we had another little person to think about and to let experience this world. We didn't and still don't ever want her resenting her big sister because she had to miss out due to Caitlin and her CP.
With all this in mind, we have been able to achieve some pretty exciting things with Caitlin.
Some of my favourite memories with Caitlin include taking her down the caves on our back just out of Yallingup. She loved the lighting in there. Caitlin has a vision impairment so the dimly lit caves was perfect for her. Legs and I had a giggle afterwards because we have spent her whole life encouraging her to put her head up, something she really struggles to do but down in the caves, there were some really narrow sections where we had to bob down to get through. Because the lighting was just as Caitlin likes it, she kept putting her head up and Legs and I kept telling her to out her head down!!!       Poor Caitlin, I can imagine if she could talk the mouthful she would have given Legs and I that day. Needless to say, after both Legs and I trudged up and down all those stairs in the cave each with a child on our backs, we were exhausted!!! But the sense of achievement that we did it and it was something else we could tick off Caitlin's list was very satisfying.
Caitlin loves being out in the bush. She always has and we always find she is her most relaxed and happy when we are camping or bush walking. I have really fond memories of camping at Sues Bridge with the girls. There is no electricity and you get water out of the Blackwood River. There is a bush toilet only and yes, it stinks and yes, I hated using it and the shower was a quick dip in the river too.
Caitlin didn't stop smiling the whole time we were there. We walked through the bush in the day and during the evening. We boogie boarded down the little river rapid, we painted on canvas, Grace made a fairy garden out of leaves and rocks and whatever else she could find. It is a magic place with some magic memories. Grace still cracks up laughing whe she retells the story of Dad chasing the possum in our tent in his orange jocks!!!
Another memory is getting Caitlin out in the boat fishing down in Denmark or on our holiday with the Lewis's in Augusta. She loves fishing, I'm not so sure if its the fishing she loves or just the sitting quietly with her family and enjoying being outdoors. Grumps is also a big helper of Caitlin's when fishing if he's around.
Ski biscuiting is something we decided to give a go too with our girl. I think we were all a bit nervous about this one but boy were we soooooo glad we had a crack at it. She LOVED it and giggled her head off. We had her in her life vest and I was on the biscuit with her while Legs drove the boat. We couldn't go too slow because otherwise the front if the biscuit tipped down and nearly threw us out so we had to get a bit of pace up to get the biscuit sitting evenly on top of the water.
We have driven across the Nullabor with her and flown to Singapore with the kids. We've followed her Daddy doing the Avon Descent and we've thrown her down every waterslide that will let her.
She has the most adorable and infectious giggle and I love to hear it. She has taught us how to think outside the square and how rewarding a bit of hard work can be. So, was it all bad??? No, not even nearly.

The second question was do I think things have got easier. That's an interesting question and I can't give a definitive answer but I can say some things have definitely got easier and some things have definately got harder.
On the whole, the emotional stuff isn't as heartbreaking now as it was. Having said that, things unexpectantly pop up and throw me into a head spin at times. But generally it's not as hard because in the early days, we had appointment after appointment and Drs always gave worse case scenarios to us and a lot if it was really hard to hear about our beautiful baby. We also didn't know how Caitlin's CP was going to effect her and therefore effect us as a family. There were so many unknowns. Today I know that I know Caitlin and the person she is. I know what she can and can't do, what she likes and doesn't like, what she needs and doesn't need so if a Dr tells me something, I know it doesn't change the person I know as Caitlin. I am also a lot stronger in myself and confident in myself to have my own opinion and not just accept everything the drs say as gospel and most of the time it is me driving the therapy/goal train so I take from the therapist what I need and file the rest away for another day, rather than desperately try and do everything everyone told me to do and in the process burn myself out. Legs is also amazing with helping out and does all of Caitlin's ABR since we've had the babies.
It is also easier because she is at school and has a whole team of people there looking out for her and  fighting for her.
It is easier because the appointments are a lot less now and the therapy is non existent. It is easier because we have a routine that we all know and it works. It is easier because I have a great team of Drs I know are there for Caitlin and I whenever we need them.
It is easier because she has things that we know she loves and things she hates so we're not flying blind so much now. One of the hardest things for her and for us is that she is non verbal and until just a few months ago, she did not have any way of communicating. We are hoping that things will get even easier when she learns to use her communication device efficiently.
It is easier because I have a great support team around me who are happy to help out when things
 aren't going well. I have beautiful friends that can make me smile when I'm struggling.
It's easier because Legs and I have a strong relationship and we know we are a team that can rely on each other to support each other. We have had to work through so much together that now we just "get" each other.
It is harder in many ways too though. It is harder because I feel so let down by The Centre For Cerebral Palsy and the "system". For some reason they must think that when the children start school they miraculously recover!!!!!! All of your therapy and the team of therapists that have been supporting you just abandon you and your child. I know that if I want therapy now, I have to yell, scream and usually  end up in tears before I get a little bit of it. It feels like I have to fight for everything for Caitlin now and this fighting turns me into a person I don't want to be.
It's harder because I have three other children who are just as needing of my time, attention and love but that's not a CP thing, it's just a family of six thing.
It is harder because she is getting bigger and heavier and Legs and I are getter older and sorer and our bodies are starting to let us down, and therefore let her down.
It is harder because I am not working and haven't gone back to full time work since having Caitlin and therefore not earning the super we thought I would be. Full time work requires a very understanding boss to allow all the time off that is required for appointments and illness.
So, when I stop and think about it, I think emotionally, on the whole, I'm a lot more stable than I was in the early years, but physically, it's definately getting harder.

Friday, October 12, 2012

Continuing on with my reflections

I often look back at those early days with Caitlin and then the arrival very soon after of Grace and wonder how on earth did I do it.
I have many memories of this time and a lot of feelings associated with them. The overriding feeling or memory is one of complete exhaustion. I was always so tired. I would be driving to the never ending appointments and fighting to keep my eyes open. I would wind the window down and turn the music up just to make sure I would stay awake. It wasn't because either of the girls were bad sleepers, to the contrary, they were both fantastic sleepers. I think it had more to do with the fact that I was at PMH 5 times a week for appointments or therapy. I would also drive to Nedlands everyday for acupuncture and to Bullcreek for CE. The appointments were hard, physically trying to get two babies in and out of the car and then entertain them for the inevitable hour plus wait to be seen, then to help Drs pull, prod and poke Caitlin while she screamed the whole time all,whilst trying to be a good, attentive and patient mum to a very tired Grace, it was exhausting and that's not to mention the emotional roller coaster I was for ever on!!
I remember feeling these incredible highs, I haven't felt these highs in a number of years and then some really low lows. I wonder now whether these huge fluctuations in mood were because I was struggling with a touch of depression. I don't know and it doesn't matter now but I have recognised that emotionally I am on a much more even keel today than I was years ago.
I do remember at the end of 2003 I think it was, everyone that was close to me being out at their works Xmas lunch and I was again stuck at home with the two girls. I was really upset because I thought, I have worked harder than I ever have before this year and no one is taking me out to lunch!! It felt like my hard work was not appreciated but so much was just expected of me. It wasn't long after this that I shut myself in the spare room for about a week and told Legs I didn't want to "do this" anymore. He was so understanding and gave me the space, love and support to help me get through it. Again I was "stuck in a moment" .
I did pull myself through somehow but I know I couldn't have done it without Legs holding my hand.
If I could rewind the time and give myself some advice I would tell myself to allow me time for me! I needed to exercise, to lose some weight, to think about something other than the girls, to see my friends. I think my head space would have been different if I could have exercised but the problem was I ran all day and when I wasn't running to appointments, I was trying to practice some of the goals and tasks her speech, OT or physio had given us. Poor Grace got dragged through it all and I carried guilt about that too. I always told myself that Caitlin needed my time and energy and that when the girls got older, the tide would change. Change it certainly has!!! Grace is a sporty spice and we now run all day everyday around after her and her sports! It is now Caitlin who is dragged all over the country side to support her sister. It has all evened out in the wash.

Thursday, October 11, 2012

But then I would take a deep breathe, have a cry and remember that I am just "stuck in a moment". I would  think of Ali's Mum and the loss and devastation she was feeling and how she would give anything and everything to be able to hold her baby one more time and I would let " that moment " pass.
Eventually I asked for help. I took her to PMH and felt a sense of relief straight away.
I fight taking her to the hospital. I think sometimes I feel like I'm failing by asking for help. I hate the guilt that I feel for putting my family and my friends out because they have to help me with babysitting and meals etc. I hate the fact that I don't get to put my babies to bed every night and kiss them good night and smell them when they are all clean and in their pj's. I hate sleeping I the chairs at the hospital and the. I hate it when we'll meaning people try and tell me to go home and leave Caitlin. I hate watching Caitlin go through what she has to go through. I hate the crap food they try and make her eat but most of all, I hate that this is part of her life and always will be and I hate the fact that there might be a time when I don't get to take her home. That thought frightens the shit out of me!!!

She is well and truly on the mend now and she is laughing and smiling like the Caitlin we all know and love. We are at a real crossroads with eating. She has the ng tube down and for the first time in years she is gaining weight. I can see it and I can feel it. I have always fought to not let the PEG become a part of Caitlin ( that's where she gets fed through her belly button) because she can eat, and used to really enjoy eating and it's a social thing and it's the ONLY thing she has any control over. If she doesn't want to eat, she can refuse!!!!
But feeding her has become quite traumatic for Legs and I. We have battled for so long and so hard that neither of us have much patience left and we both are completely over wearing Caitlin's food on our face and in our hair. Plus she struggles with her weight.
Legs wants the PEG put in and while I can see how this will make our life easier, I can't convince myself that that is a good enough reason to put caitlin through surgery, take away her social skills of eating but most importantly, take away the little bit of control she has. I know once the PEG gets put in, we won't feed her orally anymore, or if we do it will be rarely because it is quicker, easier and less stress to just tube feed her. It will become too convenient. I'm so sure if I can give her a bit more time, she will eat beautifully again and enjoy her food. I just hope I'm right!!!!
I need to go to bed now but I have really enjoyed sharing a tiny bit of what's in my head and I will write more, I need to!!!!!
Until next time.........

It's been a while

It's been years since I've written on caitlins blog and I know no one will be checking it anymore but I have had so much running through my head and so many emotions I've been trying to make sense of that I thought the best thing for me to do was try and write some of it down.
A LOT has happened in the last two years. The biggest change has been our family finally expanding from 4 to 6!!!
A big reason for me to start writing again is because there is this beautiful little girl who I knew who has got her angel wings and gone to heaven and she has had a massive impact on how I think and feel, particularly when it comes to Caitlin.
Her mum writes a lot on fb and I have followed her story and her mums raw emotions through her words and so many of her thought and feelings, fears and concerns I know, because I've thought them or felt them myself but was always so busy "doing" life, I wouldn't let a lot of these thoughts or feelings really surface.
But today as I was driving home and the U2 song "stuck in a moment" came on the iPod and the tears flowed freely down my cheeks without me really realizing it, I knew that maybe it is about time I let some of this "stuff" out.
This song was the song I put on repeat and listened to as I drove home from the hospital everyday when Caitlin was born. I HATED leaving her behind in that huge hospital all alone with no mummy to love and comfort her until I could get back in the morning. I would sob all the way. I was scared for her, for me, for us. I didn't know what the future was going to look like. I did know it wasn't going to look like the future I had planned in my 7 and a half months of pregnancy. I wanted to show my beautiful girl to the whole world and I couldn't - immediate family only in the nursery! I was so proud of her and knew she was the cutest baby I had ever seen. I was angry. I would look out the car window as we would drive home and see all these people driving to their perfect families without a care in the world and I wanted to scream at them all, "don't you understand, my world is crumbling and I can't stop it." Of course with time I know that every person I passed had their own story and their own heart aches to deal with but I couldn't understand at the time how everyone else could be carrying on with a normal life when I was so shattered.
The U2 song used to give me strength because it talks about the fact that this is just a moment in time and if you get yourself together, you will get through. You're just stuck in a moment!!! Well it's just a couple of weeks short of being twelve years since this time in our lives and while that moment has passed and we did all get through it, this song can take me right back there and all those emotions come rushing back.
I didn't understand why this happened to us??? Well I still don't, but I have realized, this didn't happen to me or to Legs, it happened to Caitlin and its my job as her mummy to love her, to cherish her and to be the best mummy I can be because Ali taught me, I don't know how long I have her to love and to cherish.
We have just had another really awful winter with Caitlin. It was hard, at times it was too hard. I didn't always know if we were going to get through it. I had such conflicting thoughts. Caitlin wouldn't stop crying, she wouldn't sleep AT ALL! Some mornings it was 530am before she slept for maybe an hour!!! We were exhausted. She wouldn't eat and spat her food all over us and what she did get in she inhaled, not ate. As a Mum it got to the point where I thought, " I can't stand her anymore!!! She is making life hell for us all and I can't find anything nice about her." she wouldn't stop crying and despite many trips to the Drs there was nothing really wrong with her apart from a "virus". Legs and I were finding it hard to be patient and loving with each other and we were snapping at the other three kids. It was HARD and NO BODY understood!! No body can understand unless they are living it.
It was Ali that helped me and didn't let me give up. It was Ali that stopped me whacking Caitlin in the middle of the night because she wouldn't stop crying and I was exhausted beyond belief.
It was awful to know that I felt this way about my girl. Deep down I always knew I loved her and I would never hurt her but the fact that I wanted to scared me and broke my heart. This is the worst way as a mum to ever feel.