Gary's Boring Blog

Learning to Laugh

My Mum, Dad, and Marlene (Dad's partner) left Japan this morning. They have been a huge comfort for the past few days. Just by being there with us, they have helped us get through each day, and each day we make it through is an accomplishment. The pain eases just a little.

Our house is now quiet, and lonely. I am worried about Megumi, who has spent most of the past year at home with Rosie, both before her birth, and then after she was born. She needs things to occupy her time, and she especially needs the love and support of friends. So, if you are reading this and you live near us, give us a call and invite us, or Megumi, out to do something. Anything at all.(thanks Amy!)
If you don't live near us, maybe we can not just go and hang out easily, but give us a call anyway!

Looking at pictures of Rosie hurts. It makes me cry. It reminds me that just a few weeks ago she was laughing and playing, and now she is not. But, as I wrote before, she didn't have a sad mummy and daddy. She had a happy mummy and daddy, who loved her very much, and smiled and laughed with her. If we don't learn to laugh again, Rosie will not recognize us, wherever she is watching from.

Megumi and I have things to plan. We will be visiting Megumi's home-town, and we may also go away for weekends to visit friends. We are also thinking about a few days in the sun. It would be nice to go away and spend some time, just the two of us, away from Japan, to come to terms with our grief. We always planned to go on a honeymoon with Rosie. Now, she will be in our hearts when she goes with us, not in our arms.

Hanging In There

Just a quick note to say that me and Megumi are both doing OK. Yesterday, we both went and had long-needed haircuts. Megumi's was somewhat more drastic than mine, but if you see us, please tell us how lovely our smart new hairdos are!

We all lit incense for Rosie last night, as it was the 7th day since she died. Apparently, the smell of the incense helps spirits find the way to heaven easier. I don't think she will have much trouble finding heaven, with or without the incense, but it is comforting to feel like we are able to do something to ease her transition into the next life.

We went out around the town today with my parents. As you can imagine, seeing other little children is really tough, but we have each other to hold onto, and having my folks here has been nice. They are helping us to get through the painful times.

Again, a huge, huge, huge thanks to all of you for your kindness. We will never forget how well you have treated us. We don't deserve family and friends like you guys.

G + M

(Thanks Steve, Mark, Will for your posts.)

Never Give Up!

Thank you so much for all your kind thoughts. In our darkest times, when we are feeling sorry for ourselves, and asking that most heartbreaking of questions, "WHY?", the love and concern in your words has helped us pick ourselves up a little.

Many people have written and told us how Rosie has taught them things, and helped them to re-evaluate their lives and their priorities. They have thanked us for sharing her story and her smile with them. I have no words to describe how proud this makes me feel. Our little girl, through the use of a couple of personal homepages, has managed to reach out and touch people all over the world.

My favourite message so far came from an email from a colleague. She wrote "Rosie only lived for 8 months, but in that 8 months she was more loved, and had more happiness and joy than most people have in all the decades of their lives" (translation my own).

Megumi and I are still very fragile. The sight of a small child can make us cry. Looking at pictures of our darling Rosie Kokoro brings us both pleasure and pain. They say time heals. Having loving friends and relatives looking out for you and caring for you helps a lot too. We feel priveleged to have such great people around us. It goes without saying that we feel honoured to have been the parents of such a brave, determined (and may I add gorgeous?) little girl.

She will live with us forever. Every time we see a rose we will think of her. Every time we listen to certain kids songs and classical music we will think of her. And of course, being the original oya-baka champions of Japan, we have a few pictures and hours of video to remember her by.

Rosie, you will always be with us, in our hearts. We hope to make little brothers and sisters for you, and we will tell them all about you, and the impact you made in your short time.

Rosie Has Gone To Heaven

I write this with a heavy heart. Our little girl, our beautiful, strong, brave, lovely, happy baby has gone to heaven. She was 8 months old.

We were called in to the hospital suddenly on Friday the 20th. This was the 3rd time we had received the nightmare 'come quickly' call from the hospital. Rosie's condition had suddenly got worse in the morning, and her heart was getting weaker. We were with her for most of the day, as she gradually lost the ability to keep fighting. Her heatbeat slowly got more and more irregular, and her blood pressure fell. At around 7PM, I asked the doctor if we would be able to hold her for a few minutes before she left us to become an angel. We had not been able to hold Rosie for over a month. Megumi needed to hold her again, and I felt Rosie would enjoy being held by us for one last time.

She died peacefully, in our arms, just before 8PM.

We had a small service for Rosie today, Sunday the 22nd. My Dad, his partner Marlene, and my Mum had all flown in, and Megumi's parents were also there.

We are obviously hurting. We are in great pain, and probably still in shock. But we will get over this. We will never give up, just as Rosie never gave up. We will never forget our little girl. We will also never forget the way she fought so bravely. Her spirit lives on, and we know she is watching over us and taking care of us all the time.

Rosie, we will never forget you darling. We love you so much. You were a gift given to us. Out time together was short, but we will always treasure it. Thank you for being our daughter, and thank you for making us so proud of you.

To all reading this:
We would like to take this chance to thank all of you again. Megumi and I have taken great comfort from the comments you have all left, both on this webpage, and in private, by email. Please continue to help us get through this by showering us with your kindness.

(for those who don't know, my email address is my first name at gol dot com.)

Keep on Hoping

This week has not been a good one. Rosie seems to have beaten off the lung problem, but now has massive swelling in her stomach area caused by an infection in her small intestine. This is making it very difficult for her to circulate blood around her body, particularly to send it back to the heart.

We were called in to the hospital suddenly yesterday because Rosie's blood pressure had dropped dramatically, and the doctors thought that her heart may stop. She has improved slightly since then, but remains in a pretty bad way.

So, please keep sending those thoughts and prayers and positive thoughts, and click on the link below to get Megumi's blog back into the Top 10 on the blog service she is using.

Megumi's Page (LINK)

Songs for Rosie

One of the nurses was surprised yesterday that Megumi was at the hospital even on a day when there was no ICU visiting time. She has been going every day with her Mum and Dad, while I have been attempting to do something useful at work, and going to the hospital during visiting times. Yesterday was the first day that Megumi went to the hospital on her own, as her Dad had to fly back to Tokushima for a couple of days for work.

Anyway, the nurse talked to Megumi for a bit, and suggested that, on the days when we cannot talk to and sing to Rosie, the nurses could play her a tape of our voices. Since we do not own a portable tape recorder, we went to buy one, then spent the evening recording ourselves singing and chatting away to Rosie. I'm sure the sound of our voices will comfort our baby, although I'm not quite sure what the nurses and doctors will think when they hear me croaking my far-from-melodic version of Yellow Submarine.

The Peace Stealers

Rosie's operation was one month ago today. She was 7 months old then. She is now 8 months old. She was put into the care of some of the best doctors in Japan. We were aware that open heart surgery carries risks, but we never even considered that there would be complications or problems.

As you can probably imagine, the past month has been absolute hell for me and Megumi. We have been blaming ourselves - "is it our fault that her heart was not perfect? did we do something wrong? should we have been better, kinder, more considerate, less selfish people? are we being punished?" We have also questioned our decision to go ahead with the surgery. In floods of tears, we have often asked each other "why did we do this to our little baby? why didn't we wait until she was bigger?Why, why, why...?"

We have looked to the future, and worried about what health problems Rosie will have, whether her brain has been affected by all she has been through, whether she will be as energetic and happy as she was before the surgery.

We know that punishing ourselves will not help Rosie get healthy, and we are trying as hard as we can to be strong and optimistic. Yesterday, I remembered a reading from the funeral of our friend Paul. It was one of his favourite readings, and I think of it as a gift from him to us, in this our time of need. We will do our best to focus on today, and give 100% in every thing we do today. Yesterday is gone, and tomorrow is a result of our actions today.

Rosie, darling, hang in there.

"LIVE ONE DAY AT A TIME" MATTHEW 6:34 (TLB)
There are two thieves that will always steal your peace – yesterday and tomorrow. Jesus said, ‘Don’t worry about tomorrow…’ (Matthew 6:34 NCV). Why? Because He knew you’d have enough to handle today! God won’t give you grace for tomorrow until tomorrow comes. Do you ever have an attack of the ‘what if’s?’ What if the stock market doesn’t bounce back? What if the medicine doesn’t work? What if? What if? What if? Look out, you’re about to be dragged off into worry.

The other area in which we get into trouble, is living in the regrets of yesterday.

Everybody makes mistakes – even those we think are so great and never make mistakes. Listen: ‘Every man shall bear his own burden’ (Galatians 6:5). We each have our own little load of oppressive faults and struggles. We all say and do things we wish we hadn’t said or done. ‘So what can I do?’ you ask. Trust God to make it all work out right. He’s able. He can help us clean up our mistakes. When you say something you shouldn’t, instead of worrying about whether or not you offended someone, ask the Lord to let them know your heart was right, even though you put your foot in your mouth. Trust God to work on them and to give you favour. That way you don’t have to spend the next several days worrying, or cringe when you meet them.

God is not the great, I was or the great, I will be. He is the great I Am! So live in today and enjoy His goodness.

Still Battling Away

Apologies for the lack of updates. There is not much to report. Rosie is still battling away in the ICU. It's 4 weeks today since she had the operation. Her lung condition is still not so good, and she is not strong enough yet to come off the ECMO machine. The doctors are attempting to treat her liver and kidneys as well as her lungs, and warning us that it will take some time before she can get better. She is being very strong and very brave, and we have to keep reminding ourselves to do the same.

We are watching videos of her playing, and assuring oursleves that she will come home, happy and healthy, and play with us soon.

Megumi and I went to a local Protestant church last week. It was rather odd. It was all in Japanese and I didn't know any of the hymns (thought I would know some of the tunes, if not the words). I think we may stick to private prayer rather than the organized variety.

Stable Condition...

UPDATE

Not much of an update. There is no real change in Rosie's condition. Her lungs have not recovered enough to take her off the heart-lung machine. She needs a bit more time to bounce back. The doctors are now using a gas again to open up the blood vessels and capilliaries in the lungs to help the blood get there.

END UPDATE

Today marks 3 weeks since Rosie had her surgery. Some of you know the details of what has happened since the operation, others will only know very generally. I plan to write down the whole saga when I feel comfortable doing so, but here is a brief summary.

The original operation didn't go well, and the doctors had to take some pretty drastic measures, notably the use of the ECMO (LINK). Just as Rosie's heart was recovering and getting stronger, she was hit by a nasty lung infection called Acute Respiratory Distress Syndrome(LINK). As the doctors aggresively treated this infection, the shock to Rosie's system was overwhelming, and her heart, which had been pumping fine, stopped. Her heart was stopped for around 100 minutes.

She was then put back on to the ECMO, and her heart started functioning again properly within a few minutes. It appears as though there was no damage to our baby's brain, despite the lack of oxygen. The ECMO was used to kick-start Rosie's heart, but it also takes over the job of her lungs, giving her lungs a chance to rest and recover.

The situation as of right now is that her lungs are getting stronger. She seems to be beating off the infection slowly. She is still not quite strong enough to come off the machine, but we are hoping she will be in the next few days.

Please keep sending your thoughts and prayers. Rosie needs your strength as well as her own.

A Little Progress?

UPDATE

Again, small signs of improvement. Rosie's lungs seem to be gradually getting stronger, judging from the x-rays. Her kidneys and liver are still not functioning properly, but the lungs are the main priority at the moment. Hopefully, she will be off the ECMO (artificial heart and lungs) quite soon...

Again, thanks for all your kind words and messages.

End Update

For the last couple of days, Rosie's condition has been getting slowly better. It's not time yet to start chilling the champagne, but she is improving ever so slightly.

Her lung infection (as I mentioned before, a scary thing called ARDS - detailed explanation will follow when she is safe!) seems to be on its way out. She is definitely breathing easier. She has also been bleeding a little for a few days, which is quite normal. The bleeding has eased considerably in the last day or two. She is jaundiced, so is a rather fetching golden yellow colour at the moment, but that is just temporary. It looks like it will be at least a few more days before the doctors consider removing the ECMO, the artificial heart and lung machine, but if her lungs keep improving, we will hopefully get to that step quite soon.

Rosie with white skin. She's a little more carrot-coloured at the moment.

Now, Megumi and I have both received LOTS of messages of support. Some from family, some from friends, some from people we have never met, but will now class as friends! Many people have asked us if there is anything they can do to help... there is.
Give Blood.
Please!
Rosie has been kept alive by the skill and dedication of the doctors and nurses, by her own strength, and by the faith shown in her by us, and by everyone else hoping and praying for her. God, in whatever form he or she takes, also seems to be playing a part.

Rosie has also relied greatly on the blood donated by kind, generous people. We will never have a chance to personally thank those people, but if everyone who reads this gives up a little of their time to donate a few millilitres of blood, other sick people can also be helped. I am a queasy wimp who hates the sight of blood, and who has walked past blood donor vans many, many times. If I can go and give a pint or two, hopefully a few others can too. And if you already donate, thank you. It may be your blood that is pumping around our brave little girl right now (more likely if you live in Japan, it has to be said!)