Christmas December 28, 2007

We had a great christmas.  There is nothing better in life than watching the joy on your child’s face on his first Christmas.  I never thought I could be happy again after Alex died and although I will never be the same person I was before, Dylan has helped fill a void in my life that I never thought possible.  Sure, it really sucks that my firstborn child died and I will never get to see him grow into a young man but I shudder to think how my life could have been if we hadnt had any children at all.  I’ve always wanted children but for some reason our journey has a been a difficult one. It has taken 5 years to have a (surviving) child and although my heart still and will always ache for Alex, I appreciate what I do have and am thankful. Christmas took on a new meaning for me this year.  

We went to the cemetery Christmas morning to bring Alex some flowers and were able to have our first family photo.  I was taking photos and another couple visiting their child asked whether we wanted them to take a photo of all of us and so we now have our very first family photo.  I wish it were under different circumstances and that Alex would have been alive today but I guess I have to learn to appreciate what I do have in my life.  

I was going to post the family photo but I look terrible so I will just post one of my two baby boys – Dylan with Alex on Christmas morning.  

 

Santa was extremely generous to Dylan on his first Christmas.  He received lots of new toys which we will soon need to buy a new house for as ours seems to be getting smaller by the day!  He was getting a little bored of his old toys and now that he is 9 months old he needs toys more suitable to his age group so we have had fun in the last couple of days playing with them.  Unfortunately he also caught a cold on Christmas day from my nephew.  My nephew was sick with a cold and I just knew that Dylan would catch it too and sure enough he woke up with it the following day.  He catches things so easily and it makes me wonder how many times he will get sick this year if he goes to child care. He is so snotty and noisy when he sleeps that it’s keeping both JP and I up all night.  Luckily he is still sleeping OK despite the fact that he cant breathe through his nose. 

He is learning new things every day and although I know he should probably be crawling by now or even walking, I’m not too worried about his development because he will get there eventually.  He has learnt to crawl with his stomach and feet and spins on his stomach like a break-dancer but still doesn’t realise he has knees that can probably get him around the house quicker.  I suppose its a blessing because he is so active and I am already chasing him around the house even though he isnt too mobile yet.  He has a walker that he absolutely loves because it gives him the freedom of getting around the house easily but he tries to run over the cat and our toes so I’m not so sure its a good thing.

I’m very excited that he is also saying a few more words even though I know he doesn’t understand what they mean yet.  He is saying ‘papa’, ‘bye’, ‘mama’ and has learnt to clap is hands.  I cant believe my little baby is growing so fast!  That reminds me that his 1st birthday is soon approaching on 26 March and I need to start thinking about what we are going to do to celebrate.  I’m not sure whether we should just have something quiet with just family or go for something bigger.  I know he wont ever remember it but we will have photos for him to see when he gets older and after all we may never have more children so this may be the only 1st birthday we ever plan.  I better start thinking soon because March is just around the corner! Yikes!

Merry Christmas December 25, 2007

Merry Christmas everybody!  We have enjoyed our first christmas together as a family and I have taken lots of photos today so I will post some now but will have to update when I have a little more time and Im not so tired.  I hope everybody has a safe and enjoyable christmas.

 

  

 

Normal child at last… December 18, 2007

We had Dylan’s cardiologist appointment today with Mr Money (no his name isnt REALLY Mr Money but he is the doctor whose exorbitant bills arent covered fully by our health insurance basically because he overcharges).  Anyway…it went great.  He had an echo and electrocardiogram done and the doctor was really happy with both tests.  He said we should treat him as a normal child and that his surgery was 100% successful.  His VSD (hole in the heart) has completely closed and his aorta is wide open so the risk of the coarctation reoccurring is minimal. It usually happens within the first year but so far so good.  He still needs follow up visits to check on his bicuspid valve but for now it functions as it should and we dont need to worry about it.  His next visit will be in 1-2 years.  Thank Goodness because it cost us $600 today and we are really sick and tired of all these medical bills. 

There was another story about the cemetery (where Alex is buried) on the news last night. This time the cemetery management were interviewed because apparently there are rules about what can be left at the childrens graves and anything exceeding a certain height or items of glass or things that can rust are removed by the cemetery staff.  I think that they are just covering up for the fact that their lack of surveillence of the area has led to vandalism and theft.  The items stolen from that couple were not anything out of the ordinary and certainly didnt breach any ‘rules’.  They again ineterviewed parents and they were upset that they werent told when items were removed from their childrens graves even if it was by the cemetery staff.   The news article which appeared in ‘The Age’ newspaper listed a phone number for other parents who had things stolen so we called them and even if it felt petty to be complaining about stolen windmills and flowers we hope that if enough people phoned that they would do something about security in the area.  Its bad enough having to celebrate Christmas without your child but when you pick out certain things to place on your childs grave the last thing you would expect is someone to be so heartless to steal them or even to remove them without telling you why.    

Dylan is really getting good at sitting by himself now.  We can now leave him sitting without worrying that he will fall.  This is a photo of him sitting in my office chair (of course I know he can fall from the chair..Im not that stupid!)

and on the couch….already trying to take over the remote control.   

Appalled! December 16, 2007

We went to the cemetery today to bring flowers and were surprised to find a camera crew in the row directly in front of Alex’s grave.  The police were also there so we couldn’t really work out what was going on but saw that it was Channel 7 so we made a mental note to watch the news to find out what it was about.  As we were leaving there was another couple visiting their child and they were being interviewed.  I think if we had stayed a few more minutes we would have been asked too but I’m glad we weren’t.  On the news tonight they showed the story of a couple who lost their 3 year old son and how his grave had been robbed.  The first time was father’s day and just recently he had his Christmas tree and angel ornament stolen.  It was quite a long story because they showed a few interviews with other people at the cemetery and with the police.  I know I have spoken about this before in my other blog.  Some of Alex’s things have been stolen in the past too.  It’s absolutely appalling that someone would stoop so low to steal from a dead child.  Its sad that the world has come to this.  I was also extremely upset at the time because it was only a few months after Alex had died.  To think that some thief had walked on my son’s grave and taken the things I had left for him without wondering about whether it would hurt his grieving parents is probably one of the lowest acts a person can commit.  I completely understand how that couple feels and am happy they called the police over it.  Maybe the thieves will be watching and will see how such a pathetic act can affect a grieving family but then they probably weren’t born with a conscience.

We did a little shopping today and have pretty much finished buying all our Christmas gifts.  It wasn’t so bad this year because we decided we wouldn’t buy for the grown-ups so that has taken some of the pressure off.  We decided we would start a new tradition today and when we were in Target we picked up a star from the Christmas tree.  On it is the sex and age of a child who we could buy a Christmas present for and leave under the tree at Target.  We found a 2 year old male and bought him a toy truck with mega blocks.  I thought it would be good idea to pick a child the same age that Alex would have been and each year we could buy a toy for a child of his age so next year we will be buying for a 3 year old.  I hope our gift can put a smile on the face of a child who wouldn’t otherwise be receiving anything this Christmas.    

I went to our local child care centre a couple of days ago to enquire about placement for Dylan for next year.  I have all the enrolment forms but they are sitting on my desk untouched and to be honest I’m scared to look at them. I feel like I’ll be deserting Dylan and leaving him with strangers but I know I have to put him in child care and return to work or we will struggle financially.  I feel so guilty.  Maybe I will look at them later.  Then again…Maybe not….. 

I suck at this December 11, 2007

I’ve gone from being a capable office manager to a boring stay-at-home mum in a few short months and I’m feeling a little unappreciated and to be honest I don’t feel I’m that great at the whole mum thing.  I was much better as a working woman as I felt like I achieved something at the end of each day.  Now I’m lucky when I get to wash my hair.  Don’t get me wrong.  I love being a mum and love spending time with Dylan but the days fly and it seems like I do nothing yet I never have any time.  Ive been on maternity leave since March and all those little projects at home I thought I would get time to do are still sitting waiting for me.  How will I ever manage if I go back to work?

I don’t want to go back to work but I need to feel productive and useful which I don’t feel I am right now.  I suck at being a mum.  I hardly ever go out with just Dylan because I find it too much effort.  It takes me 3 hours to just get out the door by the time I pack his things and feed and change him.  Its exhausting taking him anywhere as he hates the pram and so I have to carry him most of the time and at almost 10kgs he isn’t the lightest baby to carry.  So I stay home alot.  I know its not good for either of us but its just way too much effort to go out alone with him.  Yesterday I did make the effort to go out for lunch with a friend and it was a nightmare.  He was his usual hyperactive self the whole time and I had to hold him while I ate so therefore it took me over an hour to eat my lunch and by the end of it I think I had food in my hair because he kept grabbing at my plate and anything else his hands could reach.  To top it off he then vomited all over me and himself.  My friend’s baby was an angel which made me look even more like the incompetent mum with the hyperactive baby.  I don’t think I will venture out to a restaurant with him again in a hurry.   

Dylan’s cardiologist phoned me yesterday to tell me that medicare and my private health insurance have not paid him in full for his bills and that I needed to pay a ‘gap’ of $240.  This not only annoys me because I DO pay health insurance so REALLY I shouldn’t be out of pocket but he is probably overcharging…anyway that is separate issue; what annoys me more is that not once in the last few phone calls to me has he asked how Dylan was.  He has phoned me at least 5 times recently regarding money matters and not once asked about Dylan.  Dylan has his next appointment with him next week but after that we are looking for another cardiologist that cares more about his patients than making a buck.   

Assessment December 7, 2007

Dylan had his assessment with a physiotherapist from the Royal Children’s Hospital yesterday.  Apparently he is doing everything an 8 month old should be doing.  She was impressed with his smooth movements and the fact that he reaches for things behind him and balances himself well while doing it.  He has good control on his tummy and sits unsupported for minutes at a time but she says I need to just allow him to fall over when sitting so that he can learn to get back up into a sitting position by himself.  Overall he is doing well and she is not worried about his development at this stage at all.  That was a relief to know.  She thinks he will be walking by the time he has his 12 month assessment.  It’s scary that time is flying by so quickly. 

During her visit I was able to ask her more about the research that she was doing and she told me she has 46 cardiac babies and has even started including CDH babies in the study.  So far she has 3 CDH babies.  This was really interesting to know because I have no doubt that if Alex had survived that he would have been developmentally delayed because of how critical he was and the amount of time he would have spent in hospital.  He had so many oxygen desats that towards the end his doctors couldn’t guarantee me that he hadn’t suffered brain injury as a result. I would have accepted him whether he had brain damage or not and it annoyed me when the doctors repeatedly asked us if we wanted to discontinue his intensive care because he ‘may’ or ‘may not’ have suffered brain damage.  My only concern at the time was his suffering which they assured me he wasn’t.  Anyway – the physiotherapist did say that she was really worried about one of the three CDH babies but these kids go through so much in the first few weeks of life it is hardly surprising that it takes them a little longer to reach their milestones.  The fact that they survive at all is a miracle in itself.  She asked me if I was worried about Dylan and I said no but if Alex had survived I’m sure he would have needed lots of therapy.  Its so great that they are working with these CDH kids as well.       

Dylan had another tooth come through today.  Yay! He now has 3 teeth at the bottom.  He is testing his new tooth out while breastfeeding which I am not happy about.  I had to pry open his jaws this afternoon.  Lucky for me I managed to pry them open before any major damage was done.   

Growing up December 4, 2007

The wedding in Sydney was great.  The food was delicious, the couple looked gorgeous and we all had a great time.  We left on Friday night and came back Sunday morning so it was a quick trip.  Dylan is so good when we go away.  I think its because we are always out and about and he has plenty to look at and keep him entertained.  He becomes bored at home too easily with just me because he is a real people person and loves the company of others.  He hardly slept all weekend in case he missed out on anything but even though he was so tired he was still happy to be out and about. We went with my sister and her family and Dylan loves his cousins because they are always making him laugh.  As you can see my nephew has started teaching Dylan how to play the Nintendo.  Its never too early to learn!   

      

This weekend made me realise how lucky I am and I couldnt wipe the smile off my face.  There is nothing better than watching your husband and son on the dance floor boogieing the night away.  A couple of years ago I would never have dreamed that I would be a mother of two boys; a beautiful angel in heaven and one here on earth who is growing up way too quickly.  

 

I almost feel clucky again to want another baby.  I say ‘almost’ because then I start to think about the stress of being pregnant and having ultrasounds tell you something is wrong with your baby.  JP and I have talked about the timing of another and I dont think we are ready yet to go through it all again.  The end result of bringing home a baby is all worth it but having 2 stressful pregnancies in 2 years is more than we can cope with right now.  Its sad that we havent been able to enjoy either pregnancy and I just hope that next time we will be be able to bring home a healthy baby after a few short days in hospital.  That is – if there is a next time!  JP isnt so sure he wants another because he is scared and I dont blame him but we have always said we wanted three children and I feel like I would be denying Dylan of growing up with a brother of sister if we chose not to have more.  

When we got back yesterday we quickly unpacked and then went to the children’s remembrance service at the cemetery where Alex is buried. It was a warm night unlike last year so it was great to be outdoors listening to Christmas carols and lighting our lanterns in honour of our children.   We wrote christmas cards and hung them on the christmas tree.  I couldnt help but become emotional as I wrote mine.  This will be the second christmas without Alex and I cant say that it will be any easier this year than it was last year.   

 

My family came with us and it brought tears to my eyes to see how many people Alex affected in his short life.  His branch on the Christmas tree drooped from the number of Christmas cards that were hung for him.  My niece and nephew decorated ornaments for him and after the ceremony we went to his grave site and placed them in the ground for him.  It was a really nice night but hard on me emotionally. My busy life keeps me from becoming too sad but sitting at the service and having time to think about Alex and the last couple of years made me realise that it still hurts as much as ever.  In fact I think it hurts more now because I am watching Dylan grow into a boy and one day he will become a man and I realise that Alex will always be my baby and I’ll never get the chance to see him grow.  I look at photos of Alex and try to imagine what he would look like now and wonder whether he would be walking or talking yet and my heart aches knowing that I will never get that opportunity to watch these things that so many other parents take for granted.  Alex has made me a better mother.  The impact he has had on my life is enormous and I thank god every day for bringing Alex into my life even though it was for only three short weeks.