Tuesday, September 30, 2014

Four Years on, wow has it been four years, where has the time gone. Some moments it feels like yesterday, others it feels like a life time ago.

The last four years has been a journey full of such mixed emotion. It has been so sad, and certainly a walk where you find a way to live with such sadness. But after four years I have come to see my son's life as such a blessing. It saddens me where you hear of stories of where people shut down after the loss of their baby and some make the tragic choice of suicide after losing their baby, but what I want to say to them is hang in there. After four years my son's life has changed my life so dramatically.

I use to go to my jobs and always think, 'there has to be something better out there, something that has meaning' I guess my priority has always been a mum so if I've had jobs I have felt they have been tedious and extremely meaningless. I always envied my husband who seems to love his job. Don't get me wrong I love being a mum, I guess that is why I wanted to do a job that had meaning, that I could justify my time away from them.

So in the aftermath of losing Harrison I started my journey in creating Harrison's Little Wings Inc a not for profit organisation. We provide Practical Support for High Risk Pregnancies, this could be through house work, yard maintenance, financial help for things like car parking at hospitals etc. I have also been extremely blessed to have the fortunate opportunity to be sitting on several government boards and a hospital board. This has all come from my son's life. I love what I do and I am so passionate about bereavement care for women and families. Finally I feel as though I have found what I am passionate about, I have had a tragic experience, but my son's life is not lost on sadness and grief his short life showed me a world I wish on no one, but a world that needs strong Mummies and Daddies to speak up and rally for better care for families.

Harrison will always be included in my family. He will never be forgotten and always loved

Wednesday, April 25, 2012

My journey and Harrison's Legacy.

I can't believe it has gone past the 18 month mark of our sweet Harrison coming into our world and sadly leaving it way to soon. This journey has been filled with so many lows, so many tears, but it has also been filled with so much love and so much support from people I never thought possible. This journey has taught me so many lessons and Harrison's life has inspired me to do things that I would never have thought possible.

I would never have thought I would have been up in front of large groups of people sharing Harrison's story. I would never thought I would have been educating midwives about baby loss. Though I must admit, I have loved doing this, I love that Harrison's life is making such an impact of those future families that unfortunately, and tragically will also lose their babies. Unfortunately I can't stop that from happening but what I like to think Harrison's life and memory can do is make a families experience be a positive one, surrounded by midwives who aren't afraid of death and not afraid to break the stigma that our society has put around death. A family can build so many memories after their babies have died. Just by being able to give your baby a bath, spend time touching your baby, holding your baby, kissing their checks, touching their hair are such treasured and the most unforgetable memories that a family can make.

I have been busily working with Harrison's Little Wings Inc, which is Harrisons charity set up in his memory. I am so passionate about so many things. I want to continue educating midwives on baby loss and how they can make such a huge impact on a family. We have been and are starting to put in place our practical support program for families who have been given a cogenital abnormality in pregnancy or high risk pregnancy. I love this program, and I think this will touch so many lives. I am also passionate about having a bereavement midwife in every maternity hospital within Australia. I think every family deserves to be treated with gentleness, respect and get a quality of care that is so very specific to a family suffering baby loss. I think that this midwife should have specific training on how to handle these situations. So this is the legacy my sweet little Angel has left behind.

Some people ask me how do I do it. Firstly I don't think I am any different to any other mum who has lost their baby. I do think I have finally found something that I am extremely passionate about, and I am driven by an inner force and fire that I have never really had before for anything else. But I also come from a place where even though what happened with Harrison was So very traumatic, and so very sad for me, I don't want to remember him with sadness, I want to remember him as such a special gift given to me. A blessing. So this is why Harrison's charity exist.

I do still have bad days, 18 months in and there are still days that are just so hard, and I still cry and miss him so very much. I only just recently had a situation where someone made a comment about one of Harrison's photos and it devastated me. It was like someone tearing a bandaid off a sore when the bandaid had stuck to the sore, and when they ripped it off, they ripped all the skin off as well. You think you have walked a long way on this grief journey but it takes one insensitive comment to take you right back to that raw grief.

I hadn't had much time to go through Harrison's photos lately, but I was doing some scrapbooking and wanted to do a page of him, so I went through them, and those photos mean so very much and it isn't easy, every time I look through them, they make me cry. That is all I have of him. It just seems a little unfair, for someone I loved so very much to have so little to show for that love.

I miss you baby boy. I still think of you every day. My heart bubbles over with so much love for you. Love Mummy. xxxxx

Wednesday, February 8, 2012

It has been so long since I wrote.

It has been so long since I have written, I have been so busy with honouring Harrison's memory with his not for profit organisation, that I haven't had much spare time. I can't believe it is coming up to 18 months since Harrison was born, and Harrison died. Though that pain feels like yesterday. That acute intense pain, just the thought brings tears to my eyes.

This last 2 years have been such a massive journey for me, in so many facets of my life. My family life, my friendships, and my marriage. It hasn't been the easiest of roads, the fog has started to clear though after 2 years of pure struggle to get up and soldier on in life.

People don't understand how when you lose a baby there is a bit of you that is never truly happy. There is always this moment when you are out that you find your mind wondering off to that little boy that is meant to be with us. You never really feel that 'free joy' any more.

My marriage has taken a massive beating over the last 12 months, I think women and men grieve so differently and sometimes it is hard to understand how to re-connect, and whether at all you can re-connect. Losing a baby puts a massive hole in your being that there is no bridge big enough to build over it.

I have noticed that friendships have come and gone. More gone then have came. It is only recently that I have had that clarity of waking up and taking a good look around me in my friendships and I have had to question alot. There were people that in the moment they were there, but the aftermath afterwards they brushed there hands, whether that is because people can't handle the intensity of the emotion. Maybe they got to tired of me 'not being the fun me' Maybe the pain inside me was to intense, and yes I know I haven't been the most perfect friend to some of my friends, no I haven't picked up the damn phone to call you but they don't seem to understand that they could pick up the phone to. Why should I have to worry about picking up a phone.

Sometimes you just get tired of being 'strong' you get so tired of people seeing that you are doing something positive so that means your ok. You get tired of feeling like you have to fix things all the time. I have 3 children that I have here in this world with me, and Rodney being away so much for work, I am pretty much a single mum and sometimes it would be nice to feel as though I don't have to make the effort in a friendship.

I miss Harrison so very much. He is on my mind every day. I look at children that would be his age and think I should have that. Also comes with that I wonder if I could have been strong enough to look after him if he was sick. I watch a mum with her daughter who has so much courage and she is so inspiring but I read her updates on facebook and I wonder if I could have done such an amazing job like she does. She is amazing.

I also have to say thankyou to an amazing friend Leanne, who gosh girl you are amazing, and thanks for taking me out and we had such a awesome time, but thank you for listening and not trying to sugar coat anything but also thank you for letting me make my own decisions and be supportive. Thank you so very much. And thank you for helping me honour Harrison. I believe he has brought us together and I am sure he is smiling down on us so very proud.

I have sat back over the last 18 months and watched friendships come and go, mostly go.

Wednesday, July 20, 2011

Coming up to your first birthday

It isn't far away from your first birthday, only 8 weeks away, I have considered myself to have coped so far, I have had my sad moments there has been alot, but overall I think I have survived this tragedy ok. But Harrison's first birthday just seems to make me sob. The thought of trying to make a cake, everytime I think about it I cry. I don't know how I am going to go through this.
How do you celebrate a first birthday without your baby. How do you celebrate when the following day was the most tragic day. I am hit with 2 days in a row, one of Joy that my son was born, then the other day is so very sad, the day when my son died. It's so conflicting. How do you celebrate when he isn't here with me. I love him so much, he should be here to celebrate.
I should be able to make a cake that reflects his little personality, the things he likes, so when I go through the cake book, I have only 28 hours of his little life to go on. 28 hours is more then some people get, and I am grateful for those 28 hours, but then it isn't alot to go on for a cake. He was such a fighter, but how do you translate that into a cake. I feel so ripped off. I should have my son with me, I should have him to pick up and cuddle and wish him happy birthday. I want to make it so very specail for my boys, but i am trying to figure out how I am going to get through this without being a mess.
This is so very hard for me. I miss him so very much. I have lost my innocence of life and how things bad don't happen to me. I have lost my son to a horrible condition. I will never get him back. I will never get to hold him and kiss him, I never got to hear him cry, I never got to see his little eyes open.

Harrison I love you so very much. I think of you every day. I wonder if in Heaven they celebrate birthdays? Do you have a party for being in heaven for 1 whole year? It's kind of ironically that the hardest day of my life, may be a celebration in heaven. I hope you like the cake I am hoping to make for you. I will try and not cry to much why I make it, but I can't make any promises. Loving you and missing you. Love Mummy

Wednesday, July 6, 2011

How I miss you so...

It is coming up to nearly 10 months since Harrison came into our lives, and then so quickly left. These 10 months have been the saddest, and the most inspiring 10 months. Such conflicting emotions.
Coming up to the year mark makes me so very sad. I have had a few angel mums, that have come up to their angelversaries, and I see how hard it was for them. In life we celebrate the birth of our babies, but some births bring such sadness, how do you honour that baby.
For Harrisons first birthday is a 2 day event, such a sweet day of his birth, where I got to meet my son, my little fighter, but then met the next day with such devastation, such sadness.
I have met a mum recently who is pregnant with a T18 baby. She has been told her baby is not compatible with life, and so she now so bravely prepares herself for what may come. She is just so much braver then I was when I was pregnant. I hang onto that 30% with all my heart, I just wanted him to prove the doctors wrong. I wanted to get onto 60 minutes, or a show like that and tell the world what a little miracle baby I had, that proved all the doctors wrong. Some times I think maybe reality was to hard to face for me. The thought of my baby dying would take a massive emotional toll that I couldn't bear.
I know now that nothing could ever prepare you to lose a baby. Nobody could ever tell you how hard, and how sad that reality is. I can't even explain that void that forever sits inside my heart. Your life is always shadowed by that sadness of having your baby not with you. There are moments that you are happy, but then that thought of my son who isn't here to share that moment comes back, and then that moment has a sadness to it.
Harrisons room isn't set up as a baby room, we never did that, we had all the stuff in their but we didn't put the room together, if Harrison had done well, we knew he would have been in hospital for a while so I thought I would do it then. But even now I still refer to it as Harrisons room, I think that will always be his room. Sometimes I go in there to vacuum, and it still has that new house smell in his room. But for me it is like walking back 11 months ago when we moved into our newly built house. It takes me back standing in that room wondering what was going to happen, it is almost like a movie playing in my head. Then you are bought back to life and how it is. It is without hope of Harrison with us.
I still am not sure of what we will be doing for Harrisons first birthday/angelversary. i want to make it really special, but how do you make something special when it is also so sad.

Harrison Mummy misses you so very much. I hope you are having lots of fun, I am sure you have made lots of friends, you had such a sweet little personality. I hope you found my Nanna, your great grandmother. I hope she has you in her arms and rocking you, and telling you about all the times your mummy stayed at her place. I love you so very much. Sending you loads of love, and kisses and the biggest of hugs. Love Mummy

Thursday, June 23, 2011

What an Honour

I was asked by Sands state co-ordinator to come to a educational seminar for midwives on bereavement. I was asked to come and tell Harrisons story and our journey dealing with the health system, and pivot things that were said to us, good and bad, about our experience, to better help midwives to deal with families that lose a baby.
I also then was asked to do a presentation for Heartfelt, as they couldn't make it, so I busied myself with powerpoint. My 12 year son has been such a great teacher, and gee I think I have almost mastered powerpoint, just working on the whole music embedding.
It was just such an amazing night. The midwives that were there were all just so lovely, and just so welcoming.
It is funny how life works though, I drive into the Logan hospital carpark and I am thinking am I in the right place, I wasn't sure, so I thought I will go down the road a bit, I pulled out of the hospital carpark and drove down the road a bit and my phone starts to work, it was my friend Anne who is a midwife. She asked me what are you doing, I go into a fluster, and I said what are you doing, believe it or not, she is there for the seminar and had seen my car. I was so grateful that she had seen me, so we walked in together. How bizzare, it was so nice to have her there.
I am so passionate about telling Harrisons story, and helping midwives help parents. I just think that Griffith University and the hospital are starting to see that bereavement care is just so important. I am just so excited that there is this movement to help parents through such a horrific and tragic time. I am truely inspired by it, and I love that I am a part of it. I am so looking forward to being involved more with this special movement.
I was so honoured to be asked to talk on Hearfelt, I just hope that I did them justice in what I said. I know I didn't give the informative side of there organisation, but I gave the side of a parent who received such an amazing gift.
I feel Harrisons life has not only made such a massive difference not only in our lives but he has made a difference to this world, Harrison inspires me, he only lived here for 28 hours, but has made such an impact, he made such a difference, he inspires me at 34 years of age to make more of a difference with my life. I see Harrison as such a blessing, God gave me such a precious gift.

Harrison, I hope you are proud. You have inspired me to be a better person. I am tuely blessed to have been a mummy to you. You are forever in my thoughts, and I love you every day.

Sunday, June 19, 2011

This journey of grief

I thought I was doing ok with this journey of grief, I made up Harrisons Little Wings Inc to help me grief. I love his charity as I can talk about him everyday and no one thinks it is strange. I sit for days, for hours making up special albums for other families, because this just makes me feel better, knowing I can hold the hand of another family in my craft that I love so much. I just didn't start Harrison's charity for the glory, I started his charity, because after losing Harrison I had this overwhelming need to help families. I thought about what I was good at, and what I loved, and the only thing I could come up with was scrapping. So there my vision for Harrisons charity grew. I never realised in this charity world could be so cut throat, I never realised that if you were onto a good thing someone would want to come and take your ideas. I just want to do a special thing for families that have lost a baby. My albums aren't just a few pages, they are filled with 20 layouts. 20 layouts of love. So much time and love has been put into them.

I have been sent some emails (not sure how they got my email address) with this company called 'Cherubs' they are the support group of the condition Harrison died of. Cogenital Diagphragmatic Hernia (CDH) I haven't signed up with them as I found that really hard seeing photos of survivors of the condition, because I look at those photos and it makes me sad, it makes me want that for Harrison. That is what I thougth my journey was going to be like. But never the less, they got my email address as they are in the running for a massive donation from a company and are relying on votes from the public. So I have been getting on every day, as I do want research done on CDH so that it doesn't claim the life of another baby. The medical industry do not do alot of research on this condition as they don't consider it to be a massive 'killer'. Where Harrison was born in the Mater they get about 10 babies a year born there with Harrison's condition out of 50 000 babies born. So this money to be given is just a huge amount to go to research. They send emails out every day to remind you to vote, and today was about a little baby who was fighting for his life, he had numerous operations, but he survived and was home with his family. It makes it really hard reading stories like this. This was what I thought my journey was going to be with Harrison.

I have met some really lovely people lately. One family has a similar story to mine, there little boy lived longer then Harrison, but our pregnancies were very similar. It has been so nice talking to her, and relating to her journey.

I have also met another family that is just at the beginning of there journey, they have just found out there little boy is sick. It breaks my heart to hear their story and the long hard road that is ahead of them.

You kind of think you are going ok with this road of grief but then you hit a speed hump, and there seems to be alot of them on this road. That speed hump for me is those emails. I am torn because I so desperatly want them to do more research so another family do not have to go through what we went through, but I don't want to hear survival stories. My son didn't survive. A part of me thinks that is more the reason for your research. That may be selfish, but I am going to have my selfish moment. It is babies like him that I won't research done so they don't die. those families have their baby, they get to see them smile they get to hear their baby cry, they get to see their baby with their eyes open. I was robbed of hearing Harrison cry, I was robbed of seeing his little eyes open due to this cruel horrible condition. I had to see my son fight for his life, and watch him lose that battle, that is why they need that money.

Oh God, I miss him so much, there isn't a day that goes by that I don't think of him. Life gets busy, and yes life goes on, but there are always those quiet moments in the day when you are driving or when you are laying in bed trying to fall asleep and it is those moments that are filled with thoughts of Harrison.

Harrison my sweet little boy, there is this gapping hole, and sometimes you think that gap is being filled and it takes one little thing to rip it apart, and that void of missing you, and the love that I feel for you, I can't begin to be expressed. I can hug your brothers and tell them that I love them. I can bake cakes with them, I can kick a ball around with them, but how do I express my love for you??? How do I get to tell you that I love you?? I pray that God up there whispers that in your ear. Mummy loves you and misses you. Love Mummy