Days 136-153

5 months old today!!

Who ever would've thought? You know, I have lived the past 5 months, tapping on deaths door.... but you're not tapping on deaths door at all! You're strong. You're a fighter. And while your prognosis (in terms of your disability) hasn't changed, and in fact gets more obvious as you get older, there are simply no absolutes. Statistically T18 babies do not live long... but some do. And who's to say that you're not one of those "some"?

And we need help. I am a recluse, Miks.... and it's tiring... I also feel like we're at times splitting our family up: I stay at home on weekends, cooped up watching you, and Russ does stuff with the boys (with my blessing and encouragement)... but it's not good for us as a family. I don't want to wake up, and realise I have missed the boys childhood caring for my disabled child at the expense of my healthy children.

I asked Luke the other day what he thought about you and he said "I'm just sad cos she's dying". He's going to remember these times... so I feel like we need to start finding more ways of countering that "sadness" with happy memories, in the hope that they will fill his memory pot. I love you, and your challenges are hard for us, AND for you. But they're also hard for the boys. I know they're resilient (thank goodness), and they're blessed with so many wonderful things, but I feel quite strongly that I need to make an extra effort to ensure that I don't overlook how much this is effecting them without us noticing!

You're so unpredictable at the moment. One night you'll keep us up for hours at a time, and other nights you'll be completely angelic. I try to keep a similar system in the evenings, to try create some kind of consistency, but it doesn't seem to be the prevailing factor in your "behavior"... talk about rolling with the punches!

I also feel like I want to be more than that person with the T18 baby. Don't get me wrong, I don't want to undermine your value... but I also don't want to undermine mine. And I just feel like I'm becoming "that sad person" with "that sick baby". People are so wonderful to us... but, oh, I dunno how to explain it.... I just feel like people must look at me and think "ah shame"... which is kind, so it sounds strange "complaining" about it... but I'd love people to see that I am also a happy person. That we have fun and laughs as a family. We're not that dreary place. And it's probably more my view of my situation than other people's that makes me say that, but I guess I just want joy again. To feel it, and for THAT to be the obvious thing that people see in me.

With all the wonder that you are. With your sweet gentle spirit, and gracefulness.... even with all that... it's been a long 5 months. I believe that you're going to be around longer than we were led to believe... and so we need to plan for that. Because living like we are, is not sustainable for me, and I don't believe is good for us as a family- and there are 5 of us in this family. Not 1.

Anyway, with that said, happy 5 month birthday my darling! It is worth celebrating!

Days 128 - 135

Ok, so I haven't written on my blog for a while... I just seem to be up to my eyeballs in all sorts of things!

Little darling princess Mikayla is well. She had such a funny day yesterday. She was hungry.... I mean, H-U-N-G-R-Y! She was downing a bottle every two hours- as if I had starved to poor child or something! So, I decided it best that I give her the Infatrini (love the stuff), to ensure she was getting nice and full, and of course lots of great nutrients. But I am afraid I have given her a taste of the good stuff- and she has my number now, and gets quite put out if I give her the other stuff. Yesterday she was also really smiley and cute.... She's such a little gentle thing. She loves getting kisses, and still her favourite place to lie is on her changing mat (I have NO idea why... it's a terribly boring view from the mat... but what do I know?!)

I had to share this little video.... I had actually taken a couple of videos before this which had more of her smiles... but this is my favourite cos of the cute little "talking" noises she is making... it's SO Miki! I checked my iPhone... I have 61 videos on it... pretty much ALL of Mikayla... man, I need a hobby :-)

I am ok. After having a mini meltdown a while back, and a little bit of striking, lots of tea, and the occasional chocolate, I am sorted out. Watch out... I may have lots to say going forward.

I just want to say this as well: I have always written this blog for ME. I know, that's awfully selfish, but it was a healing mechanism for me. A place for me to say anything. The intention was never that others would get a view into this rather disturbed mind of mine. So with that in mind, and I will probably only say this once: please, dear readers of this blog, know that what you're reading is raw and real in that moment. It's a glimpse into a moment that would otherwise not be shared.... and you know, we all have those moments, and they're not necessarily MEANT to be shared. The things I write/ say/ feel, I simply don't factor for a moment the repercussions of. I may even have said things that now leave people afraid to say things to me lest they be the wrath of my moaning on the next days blog!

Please take what I say and feel with a pinch of salt. Not because it's not true: but rather because you're seeing the uncensored version... and you know, we all have an uncensored version... most of us just censor it!! If I have ever said anything to leave anyone feeling afraid that they may say or have said the "wrong" thing to me... please know that there is NO right or wrong. And even when I have a good old moan... the me that I am will not judge. I simply have no right to do so. Thank you for sharing in my journey so far. I feel quite privileged that you would take the time to read a moment into our little lives...The tears, the screams, the laughter, but I am afraid that in order for me to be honest with myself, and for this blog to have the purpose that I started it for, which was an outlet for my pain, a means to help me heal, and cope with what we're going through, then I simply have to pretend you're not there. And so, you'll have to forgive me for the sometimes thoughtless things I say... for the rawness that you read. It's real... but it's also sometimes fleeting.... by morning I am chipper, and you're reading, thinking I need to be locked up.... so just remember that.

Anyway, enough blabbering.... here's the little star of the show.... darling Princess Mikayla:

Days 118 - 127

It hasn't been the greatest week or two. first Miks got a little sick... just sniffly and whatnot, but was grumpy beyond words. So I took her to the doctor, and he couldn't find anything wrong to cause her to be super grumpy, so we decided to check if it wasn't maybe a urinary tract infection. Turns out it is! So, she's on antibiotics for that... and seems to be improving. Is still sniffly- but nothing bad...

But, the horrible thing is that the little rat made me sick! I have been man down for the week... even sounded like a bit of a frog.... so it hasn't been fun.

But we're all on the up and up now.

And this is really what I have to say:



It hurts, but:

"All of my life, in every season, You are still God, I have a reason to sing. I have a reason to Worship!"

Day 117

Last night was a disaster, Miks. What do I do, my girl? After 3 hours of you crying, and ALL methods exhausted... WHAT DO I DO? I feel like a useless mother. I can't even console my own child!

And all I get is "sorry". Fat load of good "sorry" does. Sorry doesn't change your prognosis. Sorry doesn't hold my hand while I am crying because my daughter won't stop crying and I am so useless I can't do anything to help it. Sorry doesn't stop you from consistently possetting up all your food. Sorry doesn't make your muscles relax so changing your nappy is a little easier. Sorry doesn't give me strength when I feel like I JUST WANT OUT! AND I DO! I REALLY DON'T KNOW IF I CAN DO THIS ANYMORE. You shouldn't be like this. You were supposed to be healthy. We had the tests for crying out loud. I was told you were fine. And you're NOT! I love you so much... but I want to take this cup from you. I want to help you. And I can't. No pill. No special machines. No drug. NOTHING.

AAAAAARRRRRRRRRRRRGHHHHHHHHHHH!! THIS IS SO FLIPPING WRONG!

I hear about prayers being answered, and about God sometimes not giving us what we desire, because maybe He has better plans in store for us. What could be better for you? For me? I am sick of all of this. Really.

On a reasoning side, I understand certain things. But on the emotional side this really does take it's toll on me... and you!? What about the toll on you? And that's what freaks me out.

There are times you're so lucid, and almost engaged. And then other times it's like we're not even there.

Why did this happen? I don't understand why you ended up like this? Why did you get the 1 in 6000? And I know I will never get the answer to that question. I know also that it had to be someone... so why not me? And why not you? But the flip side is also WHY you?? You deserved a chance just like everybody else. And you were screwed.

Honestly, there are days when I feel like the whole of Heaven is just standing up there laughing at me. Look at you! You're so useless! You're a pathetic mother! And ha ha! Look at you Mikayla! We'll just let you suffer a little longer! I mean, why not! Ha ha!

Well ha bloody ha. I am having a huge sense of humor failure!

Day 116

Miki did this really weird thing last night while she was bathing. She lifted her head, as if she was trying to kind of sit, and then her whole body when stiff... like a spasm. She was aware of what was going on, because I could see she was distressed, but she was just completely rigid!! It was very scary... so much so that I shouted for Russ... but by the time he got to the bathroom, she was fine- albeit still upset, she was no longer stiff. What was it, I wonder? It was horrible.

And then, during the night she was very clingy... wanting to be held the whole time. I ended up having to give her something to help her sleep (after exhausting all other options).

She is also possetting a lot... but even worse, she has been possetting clear water? Is that weird? Especially because she doesn't drink water? Surely it should be milky? It's really strange. She doesn't do the water thing OFTEN... but often enough for me to notice, and be somewhat concerned.

L tells me she has been fine today, except in the afternoon when she seemed to throw up all the feed that she has demanded, and guzzled down. Shame, I sometimes think she's really hungry, but her little body cannot digest all the food she's needing, so she ends up sending it all straight back up again. We go through sheets like you don't know. In fact, we've taken to putting a toweling nappy under her head, which we have to regularly change throughout the day.

I haven't spent much time with Miks during the day. I have been so busy, I just don't have time... what with work, and running around after the boys. I have also started exercising properly, which I am loving! I hate being so unfit- it drives me crazy. Anyway, one step at a time.... I've got quite some weight to lose... but it took me 9 months to put it on, and I have lost about 60% in 4 months (6 weeks of which I couldn't exercise or anything)... so I am not doing too badly.

I can't believe Miki is nearly 4 months old. One week to go. When I put what "day" shes on, I have to jot it down if I can't refer back to old blog posts.... what am I going to do when we reach 4 digits :-) ??

She is so resilient and tough this little chicken. I wish she didn't have T18.

Days 109-115

Shew! Where have the days gone!

Mikayla has been doing this very cute thing where she sucks her hand (self soothes! clever little girl).... on Sunday night we went out for a superb quality meal at... er... Spur (ok, not so quality then... but it's a big night out for us!!). Mikayla, at her little tender age of 16 weeks, was completely sold on the place. She was mesmerised by the lights.... all bright and colourful, and spent practically the whole time just STARING at them, while sucking her hand.... check her out:

As she gets older, it gets harder to "cover up" her disorder... not that I am trying to cover it up, mind you, but the minute people ask how old she is, and I tell them that she's nearly 4 months, they're shocked at her size.... which of course opens up a whole discussion on what's wrong with her. And then, cos most people don't know what a chromosome disorder is, let alone T18, it means I have to then explain the whole thing including her prognosis... so the older she gets, the longer the explanations get. What a bog!

The other thing with Miks the last week is that her voice has got all croaky. I don't know if perhaps she has a sore throat or something... but she has no temperatures or anything. She is also quite sweaty lately? Maybe the sore throat? Maybe not? Gosh! Who knows?! She has slept like an absolute star the last two nights. Although, I must confess, it does get a bit freaky when she goes for a 6 1/2 hour stretch.... and we wake up ready for the day, to no sound coming from her room. I avoid her room for about 15 minutes.... strange feeling! But she's seems to be fine. Still only does her little smiling thing seemingly to herself... although sometimes, when she feels like, she charms the socks off me with a dazzling little smile....uh... and then she looks out the window! It's very sweet... albeit somewhat disappointing that all the leaping around the room looking like an idiot isn't funny enough for her to smile at me :-). She probably just thinks I am a complete fool!! She wouldn't be the first then :-)

So I woke up at some ridiculous hour last night, and then couldn't get back to sleep. It seems a favorite pastime of my mind is to have little blog conversations in the middle of the night. NOT cool. So I thought I'd better jot it down lest it bothers me another night at 2am in the morning!

You see, I know the sky is blue. Just like I know that water is wet. That simple fact does not change. Aha... I know what you're thinking! But the sky's not always blue, right? Well, actually, the fundamental fact that the sky remains one colour no matter what "life" throws at it, doesnt' change. So, when there are clouds, I know that behind the clouds is blue sky. And when the sun sets, and there are beautiful casts of reds and oranges... I know that the fundamental fact that the sky is a particular colour doesn't change- its the rays from the sun that give it that colour (we can nit-pick on what the ACTUAL colour of the sky is... but the point is that whatever that BASE colour is, that remains the same, regardless of what "taints" or "changes" we see with our eyes). Here's the thing: God is the same. He is who He is. His character doesnt' change. Life may throw us curveballs, and what we think of Him may be clouded over- but it still doesn't change actually who He is. And we have a choice. Like I choose to believe the sky is blue, no matter what colour my eyes see when it's cloudy, or at sunset, so I can choose to believe God is who He says His is, regardless of what my circumstance may say. In my opinion, all the bad things are simply proof that we live in a fallen world.. they're not reflective of who God is at all. Yes, He had and has the ability to change Mikayla's condition, but for whatever reason, He has chosen NOT to make her better. That doesn't mean that He isn't who He says He is.

I just wish we could unpause our lives.

Day 108

You're probably wondering whats up with that? I've been humming this song all day....

Isn't it funny how when we're little we have all these hopes and dreams of who and what we're going to be. We're so young and innocent. So protected from the harshness of the world. It was such a wonderful time. I loved playing pretend when I was a child. Pretend of any kind. But there was always a happy outcome, wasn't there? I mean, you never dream about sad things, really, do you? Growing up was magical really. Princesses and kings. Tutus and tiaras. Barbies and Kens. Fairies and toadstools. Pumpkin Patch babies... with their freckles and curly red hair. Singing and dancing. Twirling and whirling. I so loved being a little girl. And I knew even then how much I wanted to see a little girl of my own, loving being a little girl. Just like I did.

And there are moments, when it makes me so very very sad that I touched that dream if only for a moment, to see it disappear as quickly as it arrived.

I had a dream...