I've been wondering recently why it is so hard for me to come and fill in this journal now. Life for the most part is happy, I've moved house, it's somewhere far more suitable for us, with lots more space and a lovely border collie puppy (nicknamed Devil Dog) called Chloe. I've been in a relationship with a wonderful guy for nearly a year, the children are happy and secure, Dominic is just the happiest most good natured child I've ever met, I genuinely count my blessings every day. But I find it desperately hard to come here and talk about it. Tears are pricking my eyes already. Perhaps it's because I've always been so honest in this journal, and perhaps I'm still not ready to deal with what's happened. For the most part I don't think about it. Moving was very cathartic for me. I left behind a lot of bad memories in that house… stains on the carpet that reminded me of when he stopped breathing, holes in the wall where Justin threw things… moving was my line under an awful year, permission to move on and be happy.
But life hasn't quite worked out that way, and I think I've had to face my naivety in thinking that it would. Dominic has been really well since he left hospital, he had a G-J feeding tube put in so he could be fed directly into his bowel as his stomach wasn't tolerating enough, he started gaining weight, and changed almost daily as he went from a frail sickly little boy into a chubby happy baby. Although I say baby, of course he isn't, he's a toddler, but he still looks like a baby. We celebrated his second birthday in style, with a big party at Bar Meze with all the people who had been there for us. It is the one thing I thought about constantly when he was in intensive care… standing up and saying how thankful I was that I was able to stand there on his second birthday. It was a very emotional day, but something that I had to do. Dominic has carried on going from strength to strength. He can use Makaton signing with great skill and has a vast vocabulary, although is picky about when he uses it, and is starting to make some babbling sounds, although again he does pick and choose when to be silent. He's also playing with age appropriate toys and laughing himself silly whenever anyone does anything he thinks is funny (which is pretty much anything!).
As a two year old Dominic can stack bricks, loves putting things in and out of boxes, loves giving cuddles and high fives, and thinks being tickled and playing peek-a-boo is the funniest game in the world. We moved house into somewhere with lots of room for all his equipment, and somewhere that could be adapted for him as he grows older. Things were going so well since we got out of hospital the bubble had to burst, and unfortunately it did with a blue light ambulance ride to hospital. It seems that we didn't make it through the winter without any hiccups and an incident with rice cereal (and yes Dominic is still very definitely nil by mouth!) and a bug has meant a hospital stay for pneumonia and for the last two weeks another horrible nasty bug has meant I've been up a lot of the night helping him keep his oxygen levels at an acceptable level… anything to keep him out of that place.
He has quite an impressive team of specialists now. They still think he's got a muscle disorder (a congenital myopathy) but don't know what is causing it. He still can't walk, he can't stand or crawl, but he can sit although not very straight (he curves like a c shape). He has a spinal brace to keep his back straight, gaiters to help him stand and is getting ankle braces as well. Poor kid! He has some great chairs that help him get around, although he prefers me! He's so small people assume he's much younger than he is though, so not that many people stare yet, although the bile back that comes from his stomach and the milk tube that also comes out do make people double take!
His hair went blonde almost as soon as he came out of hospital and he finally saw the sun and is curly like his big brother. It's my mission to keep him well as whenever he gets ill it takes him so long to get back to where he was I really miss him, which probably sounds silly, but he's just such a poppet to be around, when he's quiet and not feeling well it feel like some of the joy is missing out of my day, which makes me think how awful life would be without him. Ugh there I go again crying. I was signing the last of my Christmas cards today, finishing with Dominic's names and pausing each time to cherish writing it. I wonder when this will leave me. I think it seems worse at the moment because of the recent ambulance trip when I was convinced I was going to lose him again. Hopefully that will be the end of it though.
I can't believe how well the other two have coped. They are secure and well adjusted, despite losing me for 5 months, having to face the reality of death, having their father act like a maniac (he's been stalking me and harassing me and making my life living hell for the last year and a half) and they are still loving and see the funny side of life. Well Lilia does, Elliot is rather more negative about thing, but I think that's his personality rather than circumstances!
As a 6 year old Elliot has blossomed into a remarkably intelligent and astute little boy. He was telling the time at 4, and reads fluently and well above his peers' level. He understands relatively complicated mathematics and is a great speller. Science is his thing though, he loves to know how everything works and quite often figures things out by himself (like that hot water gets colder as the air cools it). He is a bit of a whiner which can be a bit trying, and if he can throw himself down dramatically and shed a tear when something seems unfair, then he will.
Lilia is a confident, popular little girl. She finds life easy, has a tendency to be bossy, but is a happy soul. She's started nursery and her teachers say she's an absolute delight and very able. They also say she's extremely emotionally intelligent and naturally gravitates to the older children, and that you'd never know what she'd been through in her little life. Don't get me wrong, she's completely capable of tearful dramatics, and the harmonics of her screams could shatter eardrums, but give her the pink piggy blanket to sniff and she's fine.
They all love Roger who I met in July 2007. We were friends for a while as I had no interest in starting anything. He always made his intentions clear though. It's the first time in my life that I'm with a genuinely nice and thoughtful man and I'm really happy. There have been a few wobbles on the way, there is a lot of insecurity attached with having someone who is not your children's father, and he has a family too (much older though) and sometimes finding the balance can be tough, but we laugh a lot and love a lot and our relationship is a happy one.
So anyway here we are, approaching 2009 happy, positive, but certainly for myself, still carrying deep scars which for the most part I hide. I'm proud of my children every day, just wish I had more time for them, like every mother I guess. I've missed nearly a year of their lives in hospital with Dominic and it's only now that I realise how much mothering time that is. I see it when other children of Elliot's age ride a bike without stabilisers, or Lilia's friends say they can swim without armbands, there are a lot of mummy hours that need to be given to them, but sometimes I feel like I can hardly breathe I am so busy. Dominic's schedule is packed so I rarely manage to achieve that either. We do our best though and muddle along as well as we can.
And if I dare to admit it, I'm scared of losing this, scared of something that a doctor called Marilyn said to me when Dominic was dying, that if he didn't die then, then eventually one of his infections would kill him. These words have haunted me and made the last couple of illness very difficult to deal with. My bubble of naivety was shattered, Dominic was still capable of getting ill, despite the operations, the hope, the new house, the countless lines I'd tried to draw under the whole thing, the reality that life could have had to go on without him is still very much here with me. But I'm still looking forward with so much positivity, Dominic is so happy and for the most part so well.
I wish you could meet him, you'd fall in love with him the second you did, he's just such a sweet natured, loving little boy. He's been in newspapers about his miraculous recovery and the fundraising we're doing for the Evelina hospital and is in a television advert at the moment (go to http://www.gosh.org/why-we-need-your-help/ and look for the advert there), so I've had people I don't know writing to me to tell me what an amazing little guy I have. I couldn't agree more. His fundraising page is [url=http://www.justgiving.com/DominicBlower]www.justgiving.com/DominicBlower[/url] just in case you're interested!
I hope we can come here and share our lives more often. If you want to see how big the children have got, come and find me on Facebook, I have lots of photos there. My life will move on, it must move on, and that starts with celebrating the wonderful lives of my quirky children, what better way than to share how they journey on with their lives, and how well they, and I hope I, negotiate our way through the thorns and over the bumps and go on to be better people for having taken a tougher road.
Comment #1 By Kenna Ah, those cheeks and that smile in the advert would do ANYONE in! What a peach!! Glad he's doing so well – glad ALL of you are doing well – and I hope you come back and journal more frequently! —–
Comment #2 By tysmom So glad to hear about you and your family, I went onto Facebook and added you. Sending you the warmest wishes for the holiday season. God bless you and your family. —–
Comment #3 By Quamie I am very glad to see an update from you! You all look wonderful.. I hope this next year brings many joys. Congratulations on your new relationship, move, improvements on Dom's health and all the other wonderful achievements that have happened this year. —–
Comment #4 By ChrissieF I'm so glad that Dominic is getting stronger. With no real idea what his diagnosis is (it seems-you said they still think a congenital myopathy) then you have to live the ups and downs. No one knows when the end will come for anyone but this little guy of yours is a fighter. Whether anyone has one day or 80 years, time is precious and we need to enjoy each day and live without regret. May your months to come bring your family closer and your children stronger. Big hugs. —–
Comment #5 By JamiesMom Oh I am so relieved to see an update and hear that he is doing well! I was worried about you guys. I am also very happy for you that it sounds like you've got someone good in your life now. You deserve it. You must be very frustrated that they haven't managed to secure a diagnosis for him yet but it sounds like he is making his own way in the world and growing and developing. So happy that things are better than they were. Big hugs, Mary —–
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