Monday, May 30, 2011

Days 386 - 388 Clever Girl!

I love this video clip... Mikayla loves toys with eyes... and this bunny rabbit she really loves- but it also chimes... initially she couldn't hit it hard enough to make it chime... but in the last couple of weeks (maybe it's even days), she has started giving it quite a hit, which makes it chime. She also gets really chuffed if we make a scene of the whole thing with clapping and cheering... it's really sweet.

video

Mum has been here helping me the last 3 weeks. It's been great for me.. but it's also been really good for Mikayla. I have really seen a change in her the last couple of weeks... the stimulation, and the time mum has spent with her has been fantastic.

We have two people who work for us now- and my MO is to get L to know some exercises and some stimulation etc, and then she can spend time everyday with Mikayla doing this.... so any tips on simple stuff we could start with would be greatly appreciated. I am also going to see a PT on Monday... so we can start doing more "formal" stuff after that ;)

Miks has still been on and off. One minute she's really happy, and the next really unhappy. And my husband is going away, what will end up being a total of 5 nights... and I just keep wondering how on earth I am going to cope with 4 children... two of whom are tiny and quite a handful. Especially if you-know-who is miserable... argh! I am decidedly terrified :(

Friday, May 27, 2011

Days 375 - 385 Getting into the swing of things


Gosh! Time really flies when there's another baby in the house! How has it been 10 days already!?

Jude is settling in well, Miks.... you're still somewhat fascinated when we place him near you, otherwise pretty uninterested, I suppose. His noise doesn't seem to bother you, nor does your noise seem to bother him. So it's working well having you share a room- perhaps you both know that you have company, and quite enjoy it?

You haven't been well. Last Tuesday you started sweating again. You weren't eating well. Still the norm though: in that no temperatures or anything! So, as I said in my last post, we had you on antibiotics. In the past you have always responded quite well to antibiotics, in that all your "symptoms" have normally subsided within 24 hours or so. Not this time. You're still on and off with the sweating- one day you're quite content, and we think you're better, and the next you're sweating, not eating, and all round unhappy. The worst part is that the last few nights you have started waking during the night- and getting up for two babies is NOT fun (I have developed a serious new found admiration for parents of twins. I always used to say that having twins must rock... particularly for someone like me, cos I just hate being pregnant... well, I will say that I unequivocally remove all previous comments stating that having twins is the way to go... it's SERIOUSLY hard work! Rock on one baby at a time!!).

So we're a pretty tired household. Your poor Dad... I just sometimes cannot get out of bed, and so he'll sort you out with a feed... but then he's tired, and he has a business to run! Your brother has been completely angelic. Newborns! Easy peasy (and going to change... don't worry, I am under no illusions!).

Last night we ended up giving you Panado to get you to sleep- because you were just so unhappy. But then a few hours later you were awake again, and we had exhausted all options- so I really couldn't think how to get you down again... so I gave you teething gel... and it worked! SO maybe you're teething? (It must be said: I can neither see nor feel any teeth... but at this stage we're clutching at straws! And it might not even have been the gel that "worked"... goodness... who knows?!)


The one thing that keeps striking me, now watching Jude, and how a newborn, and having a new baby in the house is: and it's really dawning on me how difficult things were with you. Particularly in the beginning. And we didn't have any help. It actually makes me sad in a way: we ploughed through those early days- just your Dad and I. I spent all my time working... and maybe that distraction was good in a way- but I am sad at the realization that it was, in some ways, quite a lonely journey right in the beginning. And I dedicated my time to other people and things. In part to try and lessen the pain... but with the advantage of hindsight- perhaps it would have been nice to have had someone ease some of that burden for us (gosh, that sounds so selfish, doesn't it?).

I guess it's a silly thing really to wish for- I mean, the reality is that by starting my blog, which was only ever a platform for me to offload some of my pain- a diary or personal journal, really- that in time I found a wonderful network of people who understood my pain, and this unusual, and often frustrating journey we were on.. people who reached out to me- sometimes a stranger- and made me feel loved, and not alone. For a season, my blog and all the wonderful friends it gave me, became my lifeline. To all of you: there are not enough thank you's.

It all sounds so selfish, but I guess the thing that has stood out, is the discrepancy of bringing you home, and bringing Jude home. How we responded to each. How others responded to each. And this is going to sounds really trite, but it's one of the reasons that I am grateful that you have done better than the odds predict- because I can now enjoy you- where I think in your early days, I just wanted to run away from it all some days. So, although hard at the moment, because I spend so much time with Jude feeding etc, I do get to spend time with you, my sweet little girl.

Monday, May 16, 2011

Days 368 - 374 She's a big girl now!

Not looking too impressed with your first intro. Although, when we took him off you, you gave us the biggest grin EVER!

So you're a big sister to a big brother....

We welcomed your baby brother, Jude John van Rensburg, into the world on Wednesday the 11th of May. Weighing a very healthy 3.87kgs, and 57cm long, the baby in the house may just be the giant in the house- I suppose he has to make his way somehow :)

You are both in love :)

He's gorgeous, and we love him. And so do you, little Miks. You are so intrigued with this little being... you so want to touch him, and if we put him next to you, you go quiet with fascination. And he is as intrigued with you. I see a great friendship... and you've got to enjoy being his big sister- because it won't be for long. This little guzzler is going to be bigger than you in no time... even with you having gained more weight, and now weighing 4.84kgs. It;s funny how Jude seems so much heavier, because he's such a "dead weight"

You've been getting sick- we've actually noticed something not quite right for a couple weeks- your eyes go all gammy, and we know you're fighting something- but it hasn't really been bad enough to substantiate doing anything drastic medication wise. But today you were super sweaty... drenched, actually, and really unhappy. So weird how you have all the symptoms of a fever, but no actual fever! Anyway, you're on antibiotics, and I am hoping you'll be back to your sprightly self soon. I hate it when you're sick- it makes me sad seeing you so unhappy. Because you really are a happy little girl otherwise. Also, at the moment it means trying to keep you and Jude apart, because I really don't want Jude to also be sick! As it is, he seems to have a bit of juandice, and I may have to lug him off to the hospital tomorrow to check. It seems one of the negatives of what "you have taught me" is how to now be more paranoid than I perhaps was in the past!

Anyway, must go catch some shut eye... I am a super zombie... and need to get every moment zz that I can.


Monday, May 9, 2011

Days 362 - 367 Birthday Celebrations!


Yesterday was your birthday. Happy birthday my little angel princess!!


I wanted to so much to make it a special day for you. Not just because it is such an accomplishment... such a grand day for you... but just because I wanted, personally, to honour you. You are who you are, and have done as well as you've done, DESPITE me. And no matter how many people tell me how amazing your Dad and I are because of how well you've done, I know that it's only because of you, and our Father in Heaven that you have made it this far- and with flying colours! You continue to amaze me... and everyday another little snippet of who you are comes out, making you more and more you.

You have taught me SO much. You've taught me about your father, and your brothers, things perhaps I might not have known. I have seen strength and courage shine through the boys in my life, that I may not have noticed so prominently had it not been for you. I am surrounded by these strong boys (and your Dad), who I feel very privileged to have in my life. Tender, loving boys, who I know will do their wives great justice. Who will honour, respect, and love the woman in their lives, because of how they have learnt to love because of you. A non-critical, sincere love based on nothing but the raw emotion of love itself.

You have taught me so much about who I am, and who I want to be. I have learnt to perhaps appreciate the small things more. I have a long way to go- because I still get sulky and bitter sometimes, but I don't take the small achievements for granted anymore. I am possibly a little less critical. Possibly a little more understanding. I hurt a little more for others, because I perhaps understand pain a little more than I did before. I am a little better at processing my disappointment than I was before, and perhaps a bit more learned when it comes to understanding that, as much as I wish it was, my life is quite simply not about me. You have taught me that I am stronger than I thought I was. Perhaps even I am a better mother than I thought I was. I understand now what a privilege being a mother is, and how, although our children are a product of us, they are also their own people; and that our responsibility as parents to find that special spark within them, that innate potential that they were born with - despite us, not because of us- and to nurture and grow it, so that they can be the best people THEY'RE meant to be. Not the people we expect them to be. And that perhaps somewhere along the way, these little people can teach us so much more than we can teach them.

Your life is also a testament to the fact that all our days are numbered in GOD'S great book. Not ours. And the value of living for today and what it has to offer, is so much greater than all the BIG things in the future that we have planned, and the failures of the past that we allow to define us. That making the most of what we are, who we are, and where we are today far outweighs the value of Our-Great-Future-Potential, or That-Thing-That-We-Thought-We-Would-Be-But-Life-Threw-Us-A-Curveball-And -Now-We're-Not.

I did not ask for a disabled child. It was not in My Big Plan. But you know what? I got it. I got you. And I am better for it. Would I change it? Oh, you betcha! In a heartbeat! Of course I want you to be "normal", partly because it would suite my plan... but also because of all the things I know we're going to "miss out on". But you are teaching me slowly that if I live my life always thinking about what I missed, and lost, and may never gain, I miss out on little magical moments from today, which will enrich my life so much more than the things I "wish I had".

Your life, while miraculous, is not a miracle. You are not walking, and going off to main stream school. Your T18 hasn't gone away. Your prognosis is still what is is, although you fall into a small percentage of children who have lived beyond 1 year. So when people talk about your life being a miracle, I can be cynical, and kind of, well, no, your still being alive is not a miracle, it is a strong fighting spirit that you have, and the fact that on the T18 spectrum, you are a "healthy child".

BUT.... AND THIS IS WHAT IS IMPORTANT.... The miracle of your life doesn't lie in your healing or lack thereof. It doesn't lie in the number of days, months or years that you are alive. The miracle of your life, is that you have managed to show people the VALUE of what life is, without you ever having to whisper a word. That you have touched lives, without ever physically reaching out. That you have made me realise that miracles are not always BIG things. Sometimes miracles are unseen and unheard. And I think those miracles are just as valuable as the "big ticket" items.

My hope is that your life teaches people the value of really living.

Happy birthday, my special girl. I love you dearly.


Tuesday, May 3, 2011

Days 355 - 361 Nearly there

So, we're nearly there. Well, you are... nearly 365 days. 12 months. 1 year. Never. ever. ever. Did I think we'd get there. Not terribly optimistic, your mother?! But you showed me, didn't you, Miks?! Mind you, you often show me up. You know, like when we decided not to get so hysterical every time you had an apnea... so you stopped having them; and the time I decided to make sure I captured one of your "seizures" on camera so that I could show the doctor, so you stopped having them; and the time I decided I'd better get you on antibiotics, cos you kept getting a snotty nose... so you stopped that too! I'd ask you to stop showing me up, but, well, it always seems to be a good thing... so, I'll take one for the team, and be the stupid, over protective, over analytical, over zealous mother. At least I still get to be your mum. There's a bonus in that!

So we're on the countdown to your birthday. And your party. We're having a "Minnie Mickey" party... har-dee-har.. do you get it? I bought you a cute little outfit today with Minnie Mouse on the front... and well, you're also still mini... and we call you mouse... oh, you get it!! I even have Mickey ears... ha ha!

Where does the time go?

I am also counting down. 1 week, 1 day til delivery. C-section. So date is decided. And you know what? I am decidedly terrified. I am sure everything is fine... but then everything was supposed to be fine with you, and what a shock that turned out to be.

You know, when you were born, your grampa wrote a poem for you. I have always meant to post it on your blog, but never seemed to get around to it (I had to send it from one computer to the other, and always forgot... and well, just never did). I thought I would post it now. How amazing how you have fought despite us all:

Mikayla I am
I came into this world a surprise of tears
Everyone downcast I could sense your fears
But what of me; I live, I breath
I’m free; I’m free; please like me; love me
Live for me

Long whispers; the burning light
My body aches my nerves are tight
But my beautiful mom and brave dad are near
They hold; I’m safe; I cry; I smile
Stay for a while

Deep down in my body things are not right
Trisomy 18: everyone repels in fright
Yes I’m down but I live
I fight; I frown; I grip; I grin
Loving me is not a sin

Luke and Josh I sense your presence
I feel your love; your robust joys; your very essence
My family across the sea
Be there; be there for me
I want to live I want to be

There you go again gramps: all tears and bluff
Two gracious grannies; softly composed from sterner stuff
Show some style; some joie de vivre
Come friends come families too
I just want to be like you

I fight on but soon grow tired
My body aches there’s nowhere to hide
But hey I’m back; I fight; I fume
Give me some room
Please change this senseless tune

Don’t cry for me when I am gone
My name’s Mikayla ‐ an injured bird a shortened song
We’ll meet again, I’ll wait for you
I am each day; a golden sun
See blue; see green; remember fun

Remember me – I love you all

You nurtured me: I was too small
Soon soon we’ll meet again
Remember me: time is so fast
I’m now; I’m here; I’m not the past.

Grampa GV

Am having so many braxton hicks, it's actually insane. And am terribly uncomfortable. You've been ok. You had this funny snotty nose, and I think it may be some kind of allergy- perhaps a type of hayfever? The minute it flares up, we give you Allecet, which works a charm. But it makes you drowsy... and I only realized this after I had dosed you with Allecet, and Mucospect (for the mucous), and you practically slept the whole day... and on my birthday too (which in some ways was nice cos I had a relaxing day as a result... thank you darling- but sorry about the heavy dose! Won't do it again!)

Had a random thought, which is that "if you love people [FIRST], then they will love you". Funny how I spent so many of my earlier years looking for love... and it seemed to elude me... but when I CHOSE to start loving others FIRST, how much love I have seen as a result. But ONLY when I make the first choice.

And my goodness, how much you have taught me! Love being one. That real love isn't about self. It isn't about what OTHERS can do for ME. It's about how you respond to others, and how you treat others. I have seen that time and time again. It's been humbling. I have learnt much about who I am... but more and more I am learning about who I WANT TO BE. Maybe I will share that one day.

5 more days. I think I am going to have to stop counting days, Miks. Already I have muddled the number of days somewhere.... Can't wait to share your first birthday! Tea and cakes for my little princess. Gave you some Milo in your mouth today... you weren't impressed. More of a fruit girl than a chocolate girl... well, for now anyway!