We are quickly approaching Henry’s 2^nd Birthday.  It’s a hard time, I should be buying two pedal cars and two teddy bears, making two birthday cakes and writing in two birthday cards.  But instead I just have to imagine what colour hair Max would have had now and if he would be as cheeky as Hen, (I know he would be just as gorgeous).  There is still so much pain from losing Max and knowing that Hen will never have his very special brother to share their birthday with.   Some people say I should be getting over it by now, so what is normal – it is not normal to lose a beautiful baby boy at just 13 days of age from such a cruel condition.  From the time we lost Max, the pain was just so intense.  To spend time with him, holding him, kissing him after he had gone, it felt like life should have just stopped.  To have to leave the room, Max just lying in the cot, knowing that this would be the last moment that I would ever see, ever hold my beautiful Maxi, was just more painful than anything a mum and dad should ever have to feel.  Then to walk out of the hospital and still the cars are driving past, people are still catching the tram to and from work, the shops are still open – it all just seemed wrong, everyone should stop – don’t they all realise that this amazing little man’s life has just ended and yet nothing changed.  Irrational I know but it was how I felt.  The only reason we kept going is because we had to, the sun kept coming up in the morning and going down at night, Henry still needed to be breast fed, Mad and Tom still needed their Mum to do all the mum things.  Almost two years down the track and the pain is not as sharp but it is still there, the curiosity of how things could have been has definitely kicked in.  Max is in our hearts for always and I know he is always with me.  I still have a lot of tears for Max, but I also have this amazing feeling of how proud of him I am, how lucky I am that I was and still am able to be his mum.  Max has taught us so much about life and what is important, he has also taught us that life doesn’t always go to plan but just because the initial plan does not eventuate, something good may still be able to come from such a hard change of direction in the plan.

Tim and I believe that Maxi has given us a gift and it is the most amazing gift.  We decided that as Hen had lost the most important person that would ever be in his life- his twin, that we would try to have a child who at least would be close in age to him.  I thought that he should have had such a close relationship to Max but instead he could end up being a bit of an outsider because his siblings Madison and Tom are so close and tend to leave Hen out of the equation.  All of our babes have been IVF and so I went back to see my doctor to discuss trying for another child and discussed why I wanted to try again so soon, she was very understanding and let us book back onto the IVF straight away (I think we jumped the queue in a pretty big way).  On July 30, 2003, we were once again blessed with two adorable babies, this time a boy – William Jude and a girl – Keeley Ruth.  I found the pregnancy to be very stressful, all possible problems (all the problems that I didn’t even give a second thought when I had Mad and Tom) with the babies  that could arise come with a statistic of likelihood, the only problem was that the chance of all these other problems and birth defects were higher than the chance of having a child with hypoplastic left heart syndrome.  So all those possibilities that could happen but would never happen to us, all of a sudden seemed so much more possible after what we have been through.  There was also the most amazing feeling of guilt, thinking people believed I was getting on with my life, not knowing that every night I would put Henry to bed and cry in his room because Max was not there also to kiss and cuddle goodnight.  I just hoped Max wouldn’t mind.  I am sure that Max gave us these beautiful babes, he knew how much we were looking forward to having twins, he also knew that with one baby we would always be thinking – what if?  But with Billy and Keeley we can’t imagine what if, if Max had stayed we would probably never have have Billy and Keeley.  Max wanted us to be happy again and so I’m sure he gave us his little brother and sister.  I had someone ask me at one stage about having a baby after the loss of their HLHS babe and I must say, I did find my pregnancy was a lot more stressed and I felt a lot of guilt, then when I had the babes it kept reminding me of what should have been with Max, it actually all seemed too easy this time around  - we just had the babes and then went home.  Having Billy and Keeley has been wonderful, they are so beautiful, they don’t replace Max but I don’t want them to, but they have eased the pain a bit by introducing a whole lot more love.

When people ask how many children I have, my four year old daughter taught me how to answer that one properly, she tells me ‘Mummy you have six children – don’t forget Max’ – I am a very proud Mum of six gorgeous little people.  In looking back and still feeling so much pain, I think I am just the luckiest Mum to have been given Max and even though he couldn’t stay for all the cuddles he will stay in my heart.  And as days go by I feel like he grows up with us.

After seeing how many lives one beautiful little life could effect, it made us realise that we too could make a difference to other people’s lives.  On the way home from Melbourne after losing Max, Tim and I decided that we wanted to do something in Max’s memory, we thought of everything we had been through over the last three months.  There were really two main stresses – Max being so sick and relocating to Melbourne.  There seemed to be such a lack of available accommodation for a possible six months, the high cost of accommodation whilst still having to pay a mortgage at home and not being able to work.  We decided that we would like to buy a ‘Max’s Place’, accommodation close to the hospital at no ongoing out of pocket cost to families of children that had to relocate to Melbourne for life saving surgery.  We are now in the process of purchasing the first Max’s place, it is a small one bedroom apartment directly opposite the hospital.  It should be available for families to stay in from the beginning of September 2004.  Tim went over to Melbourne to speak with the Social Work Department at the Children’s Hospital (I would have liked to go to but babysitting for five is hard to come by).  They are going to put families into Max’s place with the priority being South Australian and Tasmanian families and HLHS families (there needed to be priorities put on the apartment because there are just so many families needing the accommodation, it needed to be restricted somehow), the sad thing is that even with these restrictions they said the waiting list would just grow for Max’s Place (I guess that just means we’ll have to do more when we can). 

We do need to thank some local businesses who have helped us out in getting the apartment ready and very comfortable for the families that will use it:

14.6.03

It is two weeks today until Henry and Max’s first birthday.  I asked our daughter, Madison (she’s three years old), what we should get Henry for his birthday.  She told me a fire truck with a ladder that comes out, following up by asking ‘what about Max’.  She never stops amazing me.  She was only two when I had the boys and when Max passed away, but she is a very clever little girl and we have tried to keep Max in our lives by talking about him and visiting him, plus the photos that we have all around the house – he’s always going to be a very important part of our family.  I had been told about other families that had let go of balloons to go to heaven with messages for their loved bubs and this seemed very beautiful, so Mad decided that Max would like blue balloons.

The last year has been a very difficult one, at times it seemed like I was starting to cope a little better, although I still had tears for the loss of my beautiful boy every single day, but coming up to the anniversaries of his birth, his thirteen days with us and then losing him, have seemed to make those most intense feelings of grief all flood back once again.  (Leaving work at this time has probably also not helped as it has freed up my mind to think more about my Max).  I was blessed with the two most beautiful boys’ Henry is just the sweetest thing.  He is beautiful in both appearance and nature, he is very affectionate; he loves to just be near me, I’m sure he’s just looking after me.  I watch Henry, so proud of everything he does, but at the same time, so upset that I will never get to see Max do all those little things too – rolling over for the first time, sitting up, getting his first teeth, crawling, standing whilst holding on tightly to my legs, pulling his sisters hair for the first time (poor Mad, just when Tom seemed to be growing out of it).  I try to imagine how he’d look, the cheeky grin that I knew he would get, but I’m sure I could never imagine just how gorgeous he really would have been.  Their birthday is another one of those up and down days –so happy to celebrate Henry turning one – so miserable that Max won’t be there to help him blow out the candle.

Although the last year has been so heart breaking, I honestly believe that I am the luckiest person in the world.  I’m Max’s mum.  I only had him physically with me for thirteen days but he’ll be with me forever, he fits so snuggly their in my heart.  I know he’s always with me.

Max gave us a gift this year.  Since losing Max I have been very concerned about how Henry will go, the whole twin bond, I’m sure he’ll always feel Max with him.  Tim had always wanted five children, I had wanted four.  I now had my four children even though only three were huggable, while my special boy was my little angel.  We thought we’d try for our fifth child to complete our family.  I was so depressed and just felt like I needed something good to happen, I also wanted a sibling close for Henry – they could never replace Max but maybe take away some of the pain of losing a twin.  I talked to Max and asked him if it would be alright.  All our children have been IVF, so we went back to our wonderful doctor, she let us try again straight away and that’s when we started feeling Max with us.  After our cycle of collecting the eggs and microinjection to fertilise them, my eggs were put back into me on the 28^th (Max’s birth date) and on the 11^th (Max’s last day with us) we found out that we were pregnant.  Max’s number was 13, everything was 13, he was born 13 minutes after Henry, he was with us for 13 days and so many other little things – on the 13^th of January 2003 we had an ultrasound to do an early check on the pregnancy – and another miracle –twins again.  My feelings were hard to explain.  I was given the chance to take home two beautiful little babies again – how it should have been last time – but I never got to take Max home.  But it didn’t take long for the guilt to hit.  Then the feelings of, all that I wanted was Max, no one else was ever going to compare to him – I felt like I didn’t want another baby I just wanted  my Max back, I just wanted the impossible.  Then one day I realized these babies were Max’s gift and that makes them very special.  Had Max come home with us we wouldn’t have gone back to Repromed, we would have spent all our time caring for Max and his three wonderful siblings, Mad, Tom and Henry and would have loved every minute of it.  But Max chose to go and I am glad he will not suffer anymore, I am lost without him but he has given us this incredible gift – I know he’s right with us.

This pregnancy has been a tricky one, I guess every expectant mother worries about something going wrong, but I think I was doing it to the paranoid stage.  I guess spending so much time visiting Max at the cemetery makes children dying much more of a reality than before we lost Max, seeing all those tiny little headstones, and the weekly burials.  It just seems to be a place that should not exist.  On my last pregnancies, all those minimal statistics of abnormalities seemed so insignificant, 5 -10% chance – it won’t happen to us, then along comes little Max and has the worst congenital heart defect having only 0.2% chance of occurring – now anything seems possible.  I am now 31 weeks pregnant and have only just managed to relax a little and expect that all will go well with our new little girl and boy.  Only finding out Max’s condition at 30 weeks – I was just so worried of it happening again, but our doctors have been so thorough and so far we have two little bubs with good looking hearts and nice and big and fat.