~Updates~

Max's brothers sisters

Time for a new update, its been a while, its hard to know where to start.  I meet many new families through doing Max’s Place and it has been an honour to be able to share in their journeys, they haven’t all had happy endings but each of them reminds me of the hope these precious babies have, their amazing strength, how precious a parents love for there child is.  Each family that we have stay at Max’s makes me re step our journey with Max and that can sometimes be a very difficult thing but I also appreciate that they allow me to do this, because as painful as losing Max was, I don’t ever want to forget a moment of the time we had with him.

Our children are all growing up and it seems to have happened so quickly. Madi is now 9, Tom is 8, Henry is 6, Billy and Keeley are 5 and our littlest babe Hallie has just turned 3.  They say time heals and it does but to sit here and think about what to say just brings all the tears back in an instant.  I was sitting in bed just the other night and Henry came in and told me that he really misses Max. Max is his twin and I really do think there is a special bond between them.  Henry will quite often get upset that Max isn’t here to play with, to start kindy and school with him, to share his toys and play trains with him, he has a lot of questions and to be honest I don’t know how to answer them.  We sat on the bed and talked about what we thought he and Max would be doing if he were here right now.  I was looking through Madi’s sketch book on the weekend and found a picture she had done and written right across her page was ‘I Love Max’. It upsets me to know they are sad but I love that they remember Max and think about him and know that he is their very special brother.

I have the most beautiful children.  Madison has the most beautiful nature, she is so caring and kind and patient (except with Billy), she is so smart – years ahead of her age, she is naturally athletic and very coordinated and a great little basketball player.  She also loves her art.  I couldn’t be more proud of her, she is just so beautiful.  Tommy is so different from Madi.  He is very clever too but very good at working out how to push the buttons of the other kids, he’s a bit of a prankster and pretty cheeky, but then you get him in a quiet moment and he is just the most affectionate, cuddly, loving boy.  He is not so into sport as Mad but loves drawing and reading, I think he is still trying to work out for himself what he really wants to do.  Henry is our emotional boy, very smart, very mechanically minded.  He is super caring, loves little kids, he would spend all day just cuddling with me if you let him.  He adores all his brothers and sisters, he is the one who is most affected by the loss of Max and at times seems just so sad, which is hard to see.  Billy is awesome, he is the one that can always put a smile on my face (as they all can) but I don’t know what it is with him, he is so care free, he is my biggest helper although he ends up making most things take twice as long.  He always wants to please, always has the hugest cuddles to give, is the one who most nights will try to tip toe past Daddy so he can snuggle up in bed with me.  Keeley is beautiful, she is gentle and kind, has a beautiful confidence in herself, she is so loving and boy can she throw a terrific tantrum, had to one I guess.  Generally though she is just beautiful to have around.  She is so persistent, if there is something she wants she doesn’t stop until she gets it.  (I just hope her future husband is a very patient man who can tolerate immense amounts of nagging.)  And Hallie Mae, she is my baby who I just adore.  She is the cheekiest of them all and she has me wrapped around her little finger.  I can’t wait to wake up in the morning just to see her … although normally she has already snuck into our bed for a morning snuggle.  She is going to be a smarty, that is obvious already.  Every moment I get to spend with my kids is perfect, they are just my whole world, they are all so different but all so beautiful in their own ways and I just love them more than anything.

I do think about Max all the time.  I think I have reached the stage where I have accepted he has gone and he is not there to share all those day to day moments.  I think I have also got past having to know why did he have to be born with HLHS and why couldn’t he be one of the ones who got to stay, okay so maybe I have almost got past that.  A couple of years ago I thought that I was coping really well, then last year threw a bit of a curve ball.  I had to talk about Max a lot because of an association I had with Barnardos Australia and having to talk about him so much with strangers sent me back into a bit of a heap.  I thought I had found a couple of good friends to talk to but discovered that maybe this is just something I need to deal with on my own.  For those of you who have friends around who can understand – you are so blessed.  I find that everyone expects that life should have moved on for me now and generally it has but just now and again I hit a snag and I just feel like I’m not coping all over again.  At least now I know that time will pass and really I just need to be patient with myself to pull myself out of it again. 

I look back at that first day of finding out Max had HLHS almost seven years ago now.  Would I still make the same decision?  I would in a moment.  There has been so much pain since losing Max but it is all so worth it for all the love he brought into our lives, for those extra special days we got to share with him – 13 precious days.  I just wish they could have been so much longer.  Max has taught me so much about life, about noticing all the beauty around us, about loving friends, about not worrying about the small stuff.  Life is precious, whether its just for a few days or 100 years, I just want to love every minute.  Max showed me a world I never knew existed, a world where children can be so very sick, I just wish I could do something that makes a difference, that can help make the lives of all those other mums and dads who may travel a similar journey in the future a little bit easier.  One day I will figure out a way.  Until then I will continue to support Hearts of Hope who I think do a wonderful job at giving hope to new families, to see these precious children have just that – HOPE.  And the children’s charity that is so close to my heart – HeartKids SA.  It is charities like these that can really make a difference with helping families with support when they most need it. 

The journey keeps going and I am pleased to report that we are all doing just fine, better than fine, we really do have a wonderful life.  I have the most beautiful family, a  gorgeous husband who puts up with me no matter how annoying I can be, I have the most precious children whose love and cuddles are just priceless.  To all the wonderful families we have had stay at Max’s Place, you are always in our thoughts and our hearts.  I have some really special friends who have been there for me over the last seven years or so and I know I am terrible at remembering to call or email but you are always there for me and I do love you all.  Over the last year when things started to go a bit down hill, I have been blessed with two angels …. Kylie & Wendy, they only stayed for a little while but thanks girls, thanks for the hugs, the hot chocolates and being there for me and please know I am so sorry.  To the girls on the Fundraising & Events Committee for HeartKids SA, it has been great to get to know you all better over the last year or so, you are one amazing group, the effort and the passion that you put into supporting HeartKids is incredible and you accept me being there even though without my little guy here with me I always wonder if I belong.  To all you Hearts of Hopers and Angels on group mail, what an amazing, supportive group of families you are, the help, the care and support you give to one another is wonderful, you are all so far away from one another but it really does feel like one big family – Deb and Jo, you have done a truly amazing job.

Max, I love you so much.  I know I should think about you and talk about you far more than I do but it just hurts too much.  I know you are always with me and that is all that I need. I am one truly blessed mum and I know it.