Days 201-205

Well, firstly I have to say, what an amazing funeral service for Jean... such a testimony to the life she lived, and the lives she touched. Such a graceful, humble woman... I am so proud to have called her my mother in law... !! She had chosen such amazing songs as well- really upbeat, happy songs, and so, in so much as it was a time to mourn her, it was also a time to celebrate... she is FREE, and dancing with the angels!

My little Miks has really been up and down lately. She really does go from being blissfully happy, to being really really unhappy- practically inconsolable, and for no apparent reason. Saturday was a baker of a day, and she was only in her nappy the whole day... and I just let her sleep in her carry cot in the lounge where it was nice and cool. In the afternoon, I was sitting in the lounge with Tes keeping cool, and chatting, with Miks on a pillow next to me. She was just lying there watching me, and every now and again, she'd give me an enormous grin. I was gently rubbing her feet, and it obviously hit a ticklish spot, and she gave her little "grimmis" (spelling?) laugh... kind of a "a-huh" sound, which sounds like she wants to laugh, but is not too sure. I am desperate to catch it on camera, cos it's too cute, but she doesn't do it often, and invariably stops before I can catch it on camera... it will just have to sit in my memory bank. Anyway, then Saturday night she was quite unhappy, although slept relatively well. Sunday day she was angelic... and then we hit Sunday afternoon, and all the wheels fell off.

She was so unhappy on Sunday night, during the night. She is badly constipated again, and is battling to eat. She is really sleepy, but when she's awake just cries and cries. I feel so desperate for her, and so helpless a lot of the time. Today she was even worse, but it's now noticeable that she is actually getting sick... snotty nose, and actually coughed up a bit of phlegm this afternoon, which really took me by surprise! This morning, after spending almost two solid hours crying, we gave her some Calpol to calm her; and then she promptly slept pretty much the whole day (and no, it was actually a normal dose of Calpol, incase you were thinking otherwise)... so basically she fed at 9am, and then only again after 3pm! For a baby who normally feeds every 3-4 hours, a 6 hour break is quite a big thing! Plus, she basically slept from around 11:30 til 3... which again, is quite a thing for her during the day. Anyway, she is obviously feeling grotty, which we're giving her something for, and perhaps just needs to rest to recover (don't we all when we're sick?)

This morning, I went to the hospital to fetch her birth certificate (finally!)... and when I arrived at the maternity ward, one of the LOVELY nurses that was on duty when Mikayla was born, started asking about her, and how she was doing. She then asked if I had any pictures of Mikayla, which I of course said yes to (ahem, I have an entire iPhone practically dedicated to her), so I showed her the video below, and next thing I had all the nurses around oohing and aahing..... I actually got quite emotional... so proud of my little girl :-)



Unfortunately that cute little spitting/ chatty thing she does she doesn't seem to really do anymore. And I so loved it... I miss hearing her chat like that.

It's a funny thing, but even though it sometimes really hard what she's going through, and what we're going through... I know that I will miss her in my life when shes gone (and I don't know when that will be... no-one does!)... how could I not? She's my daughter! I love her! She's a precious little angel! Just wish I could do more for her... make her better! Anything!

But it's all in God's very capable hands! I try not to linger on the thought too much... because when I do, I crack... and while it's ok to do it from time to time, I also have to just take things for what they are... dwelling on it certainly won't make things better!

Day 200

Miks had a much better day today, thanks to lots of suppositories, no cereal, and I even changed her formula back to the 0-6 month (I had progressed her onto the 6-12 month, but I am not sure given the number of feeds she had a day, that the "promotion" to the older formula was actually a wise one). She was quite a happy little things today... slept well, ate well... now just holding out hope for a decent nights sleep :-)

Tomorrow is Jean's funeral... think it's going to be an emotional day... but will be wonderful to have an opportunity to honour her and remember her.

It's amazing how quickly life can change. I was thinking back to that day Mikayla was born, and how, in an instant, our lives were forever altered. The same with Jean... how suddenly she was there, and then suddenly she was gone (even though it wasn't that "sudden" per-say).. and how our lives are now forever changed. I was thinking on Sunday night that I couldn't just send her an sms... or hope to receive a note from her on my blog. Just like that. And yet, our lives on earth are but a spec in the wind really...

As the scripture says:

"Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes" - James 4:14

We are "small" enough that we should really get off our soap boxes and realise that we are not in control... our lives here on earth, as wonderful as they are, flail in comparison to the vastness of eternity... and yet we are "big" enough to the King of Kings that He would call us by name, and know every hair on our heads. Without climbing back on the soap box: I would say that makes us pretty special... I mean, the queen of England doesn't know every hair on ANYONE'S head, let alone mine...but the King of Kings?! Well... you get my drift

Good night sweet people... hears hoping for a night of actual sleep (been rare of late)

Day 199

I miss the wonderful comments Jean used to leave on my blog- always encouraging me, and always giving me a scripture or two to cling to.

My mother-in-law was an amazing, phenomenal woman. She was always faithful to the things of God, but she carried herself with a quiet, humble assurance. She was not arrogant or boastful. And even to her final days, all that she longed and hoped for is that her children would know the Lord... would love the Lord. She simply understood that there is no greater gift. And no greater rock with which to build your life on. I know that we would not have survived this far, were it not for God. Even though I don't understand. Even though it hurts most of the time. I know like I know that without the foundation of the King of Kings, we would have crumbled a long time ago.

This is one of the scriptures Jean gave to me... she always said that Isaiah was her favourite book in the bible, and she would often quote scriptures to me out of it. I hope and pray that one day I have even half the faith that she had:

“To whom will you compare me?
Or who is my equal?” says the Holy One.
Lift up your eyes and look to the heavens:
Who created all these?
He who brings out the starry host one by one
and calls forth each of them by name.
Because of his great power and mighty strength,
not one of them is missing.

Why do you complain, Jacob?
Why do you say, Israel,
"My way is hidden from the LORD;
my cause is disregarded by my God”?
Do you not know?
Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
He gives strength to the weary
and increases the power of the weak.
Even youths grow tired and weary,
and young men stumble and fall;
but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Isaiah 40:25-31

Monday night Miks slept relatively well, but the whole of today she was really unhappy. She seems really constipated. I am giving her something for it, and am not giving her the cereal anymore (are there better cereals that are easier on the tummy?)... but it meant that we had the most awful night. I am so unbelievably exhausted. Gosh, I just want a life again. Sorry, momentary "pity party"... as Jean always called it :-) Golly, I was fond of my mother in law!!

Well, before you turned 200 days, Miks, we had a momentous occasion today: you had your first haircut! Your hair was a real nightmare... because you always turn your head to the left, but also turn your head from side to side when you're lying down. I kept having to cut out really bad knots on the left side of your head. So the right side, the hair was quite long, the left side quite short, and the top really whispy and short... a bit like a baby scraggly Albert Einstein kinda hairdo. But we've given you a short back and sides, and you look too adorable. Plus, I think the long hair was making you really hot... you were often very sweaty... so I am hoping this will help you too.

Day 199. Hair cut. Done. First Cereal. {Bad idea but} done.

The funniest thing was I finished off the cut, and then I took you into the bathroom to show Russ, and I was holding you up, and you looked at him and gave him the biggest cheesy grin ever. It was super cute. You funny, funny little girl.

Day 154-198

I have been on blog-strike. Dunno why... at first I think I just kept forgetting, and then so much was happening around me, my vent-platform just took a back seat.

Where do I start?

Well, let's start with you, Mikayla. 198 days!! You are over 6 months old already. Astounding! You continue to fight, in spite of of all of us. You're still temperamental... and it's still hard to know what to expect in terms of your happi-o-meter. Last night was a disaster... you woke up at 11:30pm, 12:30pm, 1:15am, 2:30am, 4:30am, 6:10am... to say I am a zombie is the understatement of the year! You seem to fluctuate, as I have said before from absolute angelic, to war-zone. You went through a stage where you were getting quite "chatty" (little gurgley spitting noise you used to make... really cute)... and you would smile quite readily when we kissed you.... it's definately something you do less and less... in some ways it's like you're going backwards... sometimes you seem to follow us, but your [reflex] response to us isn't great... and sometimes I am not sure how there you really are. And then suddenly you'll surprise me, and just seem so lucid, and "with it". Its just so hard not actually knowing.

A few weeks ago you were REALLY unhappy... you got temps the one night of 39.3C!! and then the next day of over 38C! I called the paed, and we decided to check for a urinary tract infection. Apparently levels of (pus per something or other?) of 5 or over are considered a bad infection... your levels were 40!! I felt terrible! Anyway, we promptly put on you an antibiotic, and you're definately better.

Then, in my wisdom (and sheer desperation for the need of some sleep), I decided to try you on some baby first cereal on Saturday night just past. Well, you love it!! You obviously don't eat hoards, but you definately enjoy it. My concern is that it may be making you constipated... but I don't know how else to try improve your sleeping at night. We've been getting up to feed you like a 6 week old baby for over 6 months. We're exhausted... and I can't do this for YEARS to come, and since I believe we may have years to plan for, I need to start doing SOMETHING?? But I dunno what will work. Argh!

Here's a cute smiley pic of you (taken when Daddy was kissing you)


Then us... well, it's been a pretty hard couple of weeks. Your granny (your Daddy's mom) went home to be with Jesus on Thursday. We're very sad she's gone, but we also know she is in a better place.. and having an absolute jol no doubt with all the angels, and with your grampa! We will miss her so very much, but she is free of her cancer, free of everything she was going through the last few weeks while in hospital. She loved you so much, and prayed so much for you... I pray she's having a little chat with Jesus about you now :-)

And then me? Well, eek... you're going to be an older sister!! Can you believe it!? We have our fourth baby on the way. The first 12 weeks were horrible... I was REALLY REALLY sick. The worst I have been with any of my pregnancies. I knew at 5 weeks, but wouldn't let Russ tell anyone, as I wanted to wait to have the first downs screening at 12 weeks. Well, we had that 2 weeks ago, and it went really well.... everything looks very good at this stage. Baby looks healthy, and is growing well. I keep telling people that I will remain throughout the pregnancy "skeptically optimistic", particularly because of what happened with you... but I believe all will be well with this baby xx I can't wait to have a happy, smiley, gurgley, bouncy, active baby... (and I am crying while I am typing this).

I obviously have my fears about this pregnancy, and this baby. It will be our last, so I do have high hopes... and that scares me. But I just have to hand it to God. I have pondered it all in my head for 9 weeks now (we're 14 weeks), and I have realised that I cannot control what happens... the fate of my life and this babies life is in God's hands. he knows my hearts desire, and I can only give it to Him, and then hope. The one thing I keep thinking is that in everything we have been through this year, the one thing I cannot let go of, is hope. Afterall, if I didn't have hope, what else would I have?

I sometimes wonder what on earth God was thinking giving you into our care. I moan alot, and am sometimes still sad about everything... and if I could change it and make you healthy and normal, I would do it in a heartbeat! I wonder sometimes if I am giving you the justice and honour you deserve.... but I am who I am... and there will always be this hole in my heart where the child I hoped and dreamed for, that you were supposed to be, is now gaping. It doesn't mean I love you any less. But there are things you cannot be. And there's a loss in that. There are lots of small things we rejoice in... and perhaps we're so much more mindful of each little moment, and the treasure and blessing that each achievement brings. And yes, there are some amazing lessons I have learnt. But all that I have gained, I have done at the tombstone of my loss. And if I dwell on it, just a little, it does make me terribly sad. Why you? Why did you deserve the short end of the stick. And then, when I had the downs screening for your little baby brother/ sister, the fetal specialist that told me that just before you were born, he had another patient who was told she was having a T18 baby.. he said he was absolutely sure of it. And when the baby was born, he was absolutely perfect. And then I think: did God swap our babies? And why was that mothers prayers answered, and mine were not? But I know I'll never have the answers to those questions, so it's kind of counter intuitive asking them, because all it does is open the door to more unanswerable questions!

Anyway, hoping for a better night tonight.

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...

Days 103-107

Been another busy week... and my gosh, Mikayla has gotten cute!! She's been doing this smiling thing.... where she really tries to smile.... well, she does smile actually. It seems to be mostly on her terms...but it is so unbelievably adorable... I just can't get enough of it!

The thing I do keep thinking lately is how much I wish there was a cure, or medicine, or SOMETHING for T18. That feeling of helplessness I find really frustrating. the other thing that keeps striking me, is how BIG this "loss" has been to me. I have wanted a daughter since as far back as I can remember. When I was a little girl I played with girl dollies, when I was a teenager, I dreamed of the daughter I would have. So having that thing that I had hoped and dreamed of given to me, and yet sort of taken from me all at once is just so much bigger. I reason that I can't change it. It is what it is. And there is many a person who has been through much worse than me. And I remind myself of all the positives: she has no major abnormalities, no huge defects... we get to hold her, kiss her, love her. But the irony is that her positives are actually also negatives. I'm not going to elaborate on that... you'll just have to take my word on the matter- it's too personal to talk more than that about it.

Anyway, for today, I am just loving her.... those little grins are too cute not to :-)

Day 102

Well, an interesting day and even more interesting night.

Miks, you were pretty miserable the entire day, and then even more so in the evening. Infact, you were awake from around 3:30pm, and pretty much cried solidly from about 6 til 9:45pm. Were it not that I had a friend over, I would have been a wreck! But I managed to hold it together, and was able to pass you over when it was too much. I am so grateful I had a friend around. She just lightened the load, and of course it was fun to chat and have company while your Dad is away.

But really it does frustrate me to no end that I feel like I cannot calm you when you're moaning like that. I gave you everything I could, and nothing seemed to work. Then during the night you woke twice again. And you tried to moan to stay awake... but I'm afraid at that point I wasn't having it... its amazing how a pillow over my head can drown out the noise :-) Actually, you settled relatively easily (or I was too exhausted and just slept through the moaning... who knows?!

{Prophecy - Fact or Falicy}

In my opinion, no-one has more reason to question prophecy than me: afterall, on the surface I believe I was promised this child. I felt that promise was confirmed, and yet I was given a sick child. How can that be? Here's my thought on the matter:

1. Prophecy is NOT fortunetelling. As our pastor puts it (and forgive me, I may word it slightly incorrectly, but it should make the point): Words spoken over you are potential promises. But the only actual promises from God are in His word. His word is full of His promises to us. And that's why it's important we spend time in His word (I speak to myself here, since I don't do it nearly enough)

2. The devil "comes only to steal and kill and destroy" (John 10:10).. where is he going to start his stealing and killing and destroying... why, the very place or thing that we believe to be a promise from God, of course. The thief wants us to question God. To question our brothers and sisters in Christ. He wants us to be uncertain. I simply won't let him have that pleasure.

3. When God speaks through prophecy it's to ENCOURAGE us: "But everyone who prophesies speaks to men for their strengthening, encouragement and comfort" 1 Corinthians 14:3

The dictionary explanation for "encourage" is as follows:

1. To inspire with hope, courage, or confidence; hearten.

2. To give support to; foster: policies designed to encourage private investment.

3. To stimulate; spur: burning the field to encourage new plant growth.

There's nothing there about prediction, in either the scripture or the dictionary meaning of the word itself.

4. Who am I, and who are you, to question God? He is a loving God. But He is GOD. God almighty, God sovereignty. God on High. GOD.

5. As my friend puts it (and so well): We try and limit God to our time line. God has time lines of His own. God has plans and has order beyond our comprehension. He is just so much bigger than us. He sees well beyond what we could even conceive. Perhaps we just need to leave the big planning up to Him?

6. Perhaps my "prophecy" was merely to settle my decision- get rid of my anxiety. Who's to say what other potential God has in the future for me? Who's to say that He doesn't have greater promises for me? My hope is that He does... but more than that:

7. God will restore. In His time. In His way. That is a PROMISE in His word. That is not a prophecy. It is a truth. And that is my biggest prayer. Lord, that you would restore that which has been taken from us. That You would restore that part of me which has been robbed and destroyed. That I would feel whole again; happy; complete.

I think I'll take some pics of Miks tomorrow.

Also, I have been thinking of starting a 365 project. Perhaps take a picture every day of the year for 365 days of something that gives me joy. There are just too many sad/ unhappy things happening in the world- and it's so easy to focus on the negative stuff... I want to start seeing the good in things- finding the small joys, which upon accumulation, can perhaps bring GREAT joys? I think, if we look hard enough, we can always find something to be happy about.

Days 97 - 101

We're on triple digits!! That's insane!! I honestly never thought we'd get this far, Miks. I was pretty convinced we'd "taken you home to die" from the hospital. And while triple digits doesn't change your prognosis, it's still a pretty strange feeling.

We've had a ridiculously busy few days- especially the weekend. And you just get dragged along... passed from person to person.... you moan pretty continually- and there are times it makes me want to pull my hair out. Other times I just want to curl into a ball and weep (and sometimes I actually do!). And other times I just shrug it off as one of your nuances... who you are, really.

I've been trying so hard to get you to smile. I tickle you like mad, make silly faces... I must look like a real fool. You don't seem to know what to do with me, really. I can't say I blame you- even the boys don't know what to make of me sometimes :-)

It never ceases to amaze me how quickly life can change. In an instant our world flipped inside out. Just really quite humbling when you understand how fragile life is- and how flippant we can be about it sometimes. You've certainly given us some perspective.

Last week was really bad for me. Russ was away- and every night I seemed to sit for hours on end trying to calm you... nothing seemed to help. By Thursday I was a wreck. Thankfully that was the night Russ was home. He's away again this week, and AGAIN next week.... anyway, I must soldier on... complaining is not going to help, now is it?

And you... so little.

I have lovely thoughts about who you are to me versus who you are to the world. Not sure I have my head fully around them yet... I wake up in the night with these strange sentences floating through my head. Maybe I should start writing them down. Who knows... they could be interesting... And look at this picture of your brother... such a fighter... just like you!

Day 96

I can't.
Do this.
Any.
More.
*scream*

Days 92 to 95

Its been an interesting few days. Over the long weekend, Miks was pretty exhausting... I'm starting to think its me though ;-)... she just cries (or moans?) all the time, particularly at night. Last night it took me 3 hours to settle her. Frustrated doesn't come close to how I feel... but during the week, during the day, she's pretty relaxed... sleeps well, doens't cry too much.... but then she's with my maid, not me... I'm starting to think that L is her favourite, and not me!! And of course, L loves her right back! It's actually a treasure to watch... the problem is that L isn't around in the evening and weekends, and that's when Miks plays up.... maybe Mikayla thinks L is her mom, and not me, and she pines for L when she's not around :-)

So on Monday morning we had a ladies breakfast for woman's day. A short talk, followed by LONG ministry. Everything was amazing... and then someone said they felt they should pray for me. And, well, it just all came out. I think on some level, when I really let myself collapse into whats happened, and how quickly our lives changed... really, in an instant... when I really let myself FEEL everything I am feeling.... well, it just HURTS so very much. In those moments, I can literally feel.... and it is a very real PHYSICAL PAIN... the hurt. It is so tangible. And then the anger rises with it- and that too is such an immense PHYSICAL sensation. I have never known pain like it before. Such a feeling of loss. Such a feeling of emptiness.... it came back, all in a moment.. the rawness of it all. But it felt good to have a moment to let it out.

Last night, Josh was scared, because the wind was howling, and really, these tin (steel?) roofs are really quite noisy in the wind (well, ours is anyway)... and he told me he had asked God to send His fairies to look after him... ha ha ha ha ha.... I of course corrected him that what he really wanted God to send was ANGELS. Then, just to clarify it, I told Josh how very BIG and STRONG angels were.... how they could FIGHT (not like fairies who are just dainty and float around in the wind... ha ha)... but at the woman's day I realised something... God sends little angels to us all the time. And they're in the form of friends. Family. Strangers. And they may not come with swords and wings... but they're fighting for us. God is fighting for us through them.

Something else that really made me think was this: sometimes, in order to be strong, and to come through this battle shining, we need to be vulnerable. There's of course the analogy that Jesus knocks but he waits for US to open the door. I also had a friend once say to me that God opens doors, but we need to walk THROUGH it. Often there is a responsibility on our part to DO. God could have made us little robots, but He gave us free will. Things happen in our lives, and we can choose to have broad shoulders, and deal with things on our own. Or, we can choose to sometimes be vulnerable. Vulnerable to God. Vulnerable to friends or even to strangers, so that we are in fact SURRENDERING to Him. And allowing Him a chance to work in and through us.

None of us are islands. And yet we go through life thinking no-one must see our pain. No-one must see our fear. No-one must see our guilt. But sometimes God sends other people to be His angels. So that we can have someone fight for us. Someone to help lift our burden.... and for Him to show us that He is there... loving us.... even when we think we're unloveable... or perhaps just unloved.

There are times when I look at all of this, and I wonder how my Father in Heaven who loves me, could watch me endure this pain and suffering, without a rainbow ending.... the ending to this story, with Mikayla is going to be sad. Whichever way. But I just keep reminding myself:

God loves me.
God loves Russ.
God loves Mikayla.
God sees.
God feels.
God restores.

By the way, I once watched a thing by a guy with cerebral palsy, talking about healing... and the thing that stood out for me which he said, was this simple fact: EVERYONE WILL BE HEALED. JUST SOME, NOT THIS SIDE OF HEAVEN.

Our hope is in an eternal heaven. Not an eternal earth.

I can't believe that were nearly at triple figures... Miks you little gem! You're just showing everyone, aren't you!?

Miks had some lumps on her chest, and a lump on her arm.... the chest is apparently breast tissue (!!), and the one on her arm is because of her BCG (?) injection of 14 weeks ago!! Garsh! But she's fine. Me? I am very tired... Russ has been away, and this looking after 3 children, including 1 times grumpy 15 week old... NOT FUN! And the WORST PART... is that I ran out of milk..... AAAAAAAAARRRRRRRGHHHHHHHHH......... NO TEA!!!!!!!!!!!!!!!!!!!!!! What a sucky end to my night!!

Days 90 & 91

Mikayla has been a bit of a disaster at night... she wakes up, and then won't go back to sleep, but just cries and cries. I am resorting to every which thing to help settle her... but it's ended up in tears in my court most times too. It's really hard. I don't know what's wrong. I can't comfort her. I don't know if shes sore, or uncomfortable, or just fussy. And while she may not have the loudest cry, after 3 hours, it's fairly earth shattering!

So, onto my last blog point. Faith vs. Healing.

You know, on occasion I have people telling me that I have to BELIEVE that Mikayla will be healed. That it's up to my belief- my faith. Now without going into a complete rant about the issue, I want to point out a few things, that I believe. I am no theologian, or great religious scholar, or well versed biblical fanatic... this is just my opinion.

1. God does not NEED our faith to make things happen. He may desire our faith, encourage our faith.... but he certainly doesn't need it. I think it is completely arrogant on our part to think that in order for God to make big things happen, that he needs something from us.

2. While God may desire our faith. If it's HIS desire to heal.... He will do so- if it's to glorify HIM. Quite frankly I cannot believe that God would make us bear the responsibility of whether or not healing or other miracles take place. He will make things happen through us, but DESPITE us. If He made it MY responsibility whether Miks was healed or not- well, in my opinion, that's simply CRUEL. And I believe in a God who LOVES. Not a cruel God.

3. Some people have this twisted notion that miracles are only big things. You know: someones leg growing back... people coming back to life... that sort of thing. Now, that's true, those are miracles... but there are small miracles that are brought about through God's grace daily. Some people are so busy looking for the big ticket items, that they miss all God's glory along the way. Mikayla essentially has a terminal "illness". And YET... she is alive. Only 20% of T18 babies live beyond 30 days. Is that not miraculous already? Is it not miraculous how a community will pull together to love and support one another in tragedy... is that not miraculous? Just as an aside... the bible also says that the devil will bring miraculous signs and wonders ("The coming of the lawless one will be in accordance with the work of Satan displayed in all kinds of counterfeit miracles, signs and wonders" - 2 Thessalonians 2:9). Frankly, in my opinion, if your faith is built on signs and wonders, well, that's not the kind of foundation that I think Jesus was talking about. I am not denying that God uses miracles to bring people to Him... but it's not enough to walk in faith based simply on miracles.

4. It is highly, HIGHLY irresponsible to tell people that their "miracle" will come if only they believe. What if it doesn't come? Didn't they believe enough? Aren't they good enough Christians? Doesn't God love them enough? I mean, come on! Surely people who utter these terrible words to others can see the damage and hurt they could cause?!We are meant to encourage and love one another... telling me that my daughter will be healed, but I have to believe first is WRONG. SO VERY VERY WRONG! And it makes me furious beyond words. We should hope for miracles. Desire them. Pray for them. And yes, believe they will come. But there is such a thin line there between believing in a miracle and expecting one... and putting all the responsibility on my shoulders. If the miracle were up to me, I wouldn't need a God, now, would I?

I love my daughter, and more than anything it is my hope that she would be healed. But I know that it's not up to me. Its up to Him. And I also know (and God knows this), that my desire is that she is healed completely.... but we aren't dealing with a treatable disease or disorder here, and I know what the statistics are on these children- there are NOT cases of children getting healed from their T18... and I have to prepare myself, because it will simply hurt too much if I don't. People will argue then that I don't have enough faith. And, quite frankly they can get stuffed for all I care. Because until you have been in a situation like this, who ARE YOU to criticize?! And it's always the people who sit on their soap boxes without a trouble in the world telling others how to live their lives, and how to walk in faith.... but wait until the storms come their way.....

I don't need God to send me a miracle, for me to love Him. I will love Him THROUGH the storm. And when I am angry, I will scream at Him, while He holds me in His arms.

Oh, and by the way, I need to add: God didn't make this happen to teach me or Russell a lesson. That too, is cruel. Really, some people need to just THINK before they wag their tongues all over the place.

So, that's my vent.

Went to friends for dinner tonight, which was wonderful... but little Miks basically moaned the ENTIRE evening. Really, I am exhausted!

Days 88 & 89

Miks is still really grumpy when she's awake. She seems to get particularly bad during the night. To put it into perspective, last night (Wed), she had a feed around 4pm... and I wasn't able to settle her until around 9:30pm... and understand that the whole time she cries... then she woke at 11:30pm to feed, and I couldn't settle her until around 2:30am. So Russ and I are pretty exhausted! Infact, I actually resorted to giving her something to help her settle. What else could I do?

Really been thinking about God's ability to heal vs. our faith. It's a big one... but I don't want to talk about it now. I am wrapping my head around it... and I will share tomorrow on what I think on the matter. Just my little thoughts, of course....

But now I want tea and my bed.

Day 87

Miks has been fine today... she's still grumpy when she's awake... but I think that's just how she is :-(

We all went for a walk late this afternoon... Miks in her pram (after much fussing, she eventually slept while we walked)... I just love being home... walking around the estate, it's quiet and peaceful... it's home ! I love it!

The thing that's worrying me at the moment though is my domestic worker/ child minder.... she just loves Mikayla so much. I think when she lost her little boy (in utero, at around 36 weeks), and then came back to work: well, Mikayla has helped her with her grief. But Mikayla is going to be another loss to her.... and really, Lindiwe is like Miks' second mum. She hugs her and kisses her- she really loves Mikayla. And I worry about how she'll handle this loss. I told her yesterday that she needs to prepare herself (as much as is possible)... but I could see that this upset her.

The other thing that got to me yesterday, was reading up on another T18 mum's blog (in America)... she lost her daughter when she was 2 1/2. I didn't read too much into what eventually caused her death- but she spoke about going to the pulmonary cardiologist or something - which suggests to me that perhaps she died from pulmonary pressure... and the one thing she commented on was how much pain her daughter was in... and THAT is what scares me the most with Mikayla. More than anything, I don't want her to be in pain. It would destroy me. Please please please God, don't let her die a painful death... PLEASE!! There cannot be any good that will come out of that... PLEASE! If there is one prayer that You answer for me- please let that be the one.

Another thing I am worried about is my precious mother-in-law. She wasn't well the week before last. At first they thought it was a bleeding ulcer, then they thought it was food poisoning, but after having a CT scan on Monday, they have said that she has fluid on her heart and lungs? She was having it drained last night. The oncologist is not sure what is causing it, and as I understand, she will be seeing a cardiologist. Please pray for her. I know she doesn't want to worry us- but we love her dearly, and just long for her to be well.

Day 86

Well, from one extreme to the other!! I've been so worried about MIckey's well, we'll call it "lack-of-nether-region-business"...and, well, last night at her 1:30am feed, I had to change her nappy due to a smelly one... then again at 5:30am, then again at 08:30am. I know I should be leaping around with joy... but really, if we could just keep things simple, normal, and consistent, that would be great! But no, Mickey quite enjoys keeping us on our toes (now with pegs holding our noses!).

Anyhoo...

So, my little muppet has had a rather grumpy day. Seriously, she is just unhappy when she's awake. I long so much for my cuddle to be enough to comfort her in some way or another. But it doesn't. Makes me feel so horribly inadequate as a mother.

I was wondering: if God doesn't cause disease and pain and suffering (and I believe He doesn't), but He is all-knowing (and He is), and He will make good the things that are bad in our life... well, then is it somehow, in some rather twisted way, still caused, or granted by Him? I mean, don't get me wrong, I believe God doesn't cause pain... but, if as everyone keeps telling me, I will learn something through this... well, why would He use my pain and suffering to teach me something... isn't that somehow a little cruel? Especially since He knew I was going to suffer? Why didn't He rather PREVENT my pain? Prevent Mikayla's suffering? I dunno... there is a rather thin line there. I'm not dwelling on it too much... because I simply will not believe that God is cruel. Cruel doesn't equal love. And God is love. But, I dunno... just a weird demented thought that occasionally grabs me. Mikayla was the only pregnancy that I prayed to God for His guidance on whether it was right or not.. and this is the pregnancy that produced a sick child? Isn't that a little... I dunno... perverse somehow?

Anyway, I'm going to mull over that for a little while. I'm not terribly sad about it... just a bit... well... curious, I guess.

Days 84 & 85

It has been an emotional roller coaster ride of note the last few days. I am terribly tearful.... am finding this all a little cruel. Cruel for me, but mostly cruel for Mikayla. Why should she end up with the short stick? With less of a life? Why, in the pool that she was dealt out of, was she given less? Why did she deserve less? I know there's no answer to that question, and I may NEVER know that answer... and mostly I am ok with that.... but this last week it was just all too much for me.

And I think that's ok. I am not going to pretend everything's ok if it's not. It is what it is, and sometimes I am allowed to be sad about it... and boy have I been sad!!

Everyone hopes for a perfect child. And it's really, quite simply, a privilege to be granted that hope/ dream. I could kick myself for having been so arrogant about it with the boys. I was blessed with two perfect boys. All ten fingers and all ten toes. It's a blessing- not a given!!

I'm just sad because my job, as a parent, is to protect and nurture my children- and I haven't been able to do that for Mikayla- nor can I do it going forward for Mikayla. It's horrible feeling so terribly helpless at times.

Anyway, I've had a week of crying. My eyes are sore. And I feel better for it.

Had to share this funny clip: Miks does this funny thing with her lips... sometimes the tongue even joins in on the action.... it makes me giggle:

Day 83

Well,the last 3 days haven't been great. Really, to put it quite bluntly, I've been a complete basket case!! :-) Have just been so emotional. I think it stems from the fact that Miks has been seemingly uncomfortable all the time. The pooing issue isn't resolving itself- and she either sleeps, or is UNHAPPY awake.

It's just soul-destroying loving her so much, but not being able to help her.

I got so over it all, that I ended up phoning another pediatrician (well known and older pediatrician, who I know has had years of experience, and by process of elimination, would definately have seen more cases than most of T18 babies). Anyway, after many tears, and going via my GP, I managed to get an appointment with him today.

I don't really know what I expected. It's not like her condition is fixable. And it's not like his knowledge will change anything. Really unlike me, I had a complete meltdown the minute he walked in the door. He was lovely. I am starting to cry just thinking about it. *sigh* I just sometimes wonder what the point of all of this is. It seems so cruel for Mikayla. And it's certainly not wonderful for me.... the prognosis is ultimately death. I guess that is all of our prognosis anyway, and at least I know where she will go, and that one day I will see her again- and then she'll be healthy, whole, happy. But for now- it just seems so, well, pointless. Don't take that the wrong way. I love Mikayla. Nothing changes that. But as she gets older, and is more alert, so her neurological functioning, or rather inability to function, causes her muscles and her little body in general to react more to it.This is what her irritability is caused by. He also said that the pooing (or her seeming discomfort from lack of) is again a neurological thing. Basically it causes her muscles to contract, and they working against each other causing little spasms- and when I give her a suppository, it basically causes these muscles to relax, which is why she will calm down almost instantly after a suppository. (I have probably explained it REALLY badly... but anyway!).

Lately, I just feel... I dunno... sad. Angry. Disappointed. Tired. For me. But mostly mostly for Mikayla. It's just wrong that she has to go through this. I don't want this for her. I NEVER would have wanted this for her had I known she had this condition. We went through my pregnancy in ignorant bliss, and therefore weren't able to make an informed decision when she was born. I want her to have quality of life. I mostly want to scream now. I am just.... I don't have words.... I ....

*sigh*...

Mikayla, I'm sorry my darling. I am so very very sorry. I am sorry I couldn't protect you. It was my job, and I failed you. I know this isn't my fault. I know I had no hand in this... and yet, somehow I failed you. I'm sorry. I am so very sorry.

Days 73 - 82

Can't believe it's been so long since my last post.

It's been a pretty chaotic week for me.

Mikayla hasn't really been great. Particularly the last week. She has been terribly miserable. And I am tired of feeling like an island (medically speaking). I hate seeing her seem so uncomfortable. In pain maybe? I don't know. That's whats frustrating. I just don't know. And mostly all I get is a whole lot of pity. I don't want pity. It's patronizing. I want facts. Solutions. Something. (don't get me wrong here... pity, and care are not the same thing!!)

I find all of this so terribly cruel. For Mikayla. She's an innocent child, for goodness sake. Won't somebody help her!?!?

I just feel like I get an "oh, sorry for you. But don't worry, she'll die soon. So just wait for that". But you know what... she might NOT die soon. She may live 2 years. 5 years. 10 years. I don't know. No one knows. Just like everyone else can't plan as if tomorrow will DEFINATELY come, we also cant plan for tomorrow definately NOT coming.

Today and yesterday I am angry.

Mikayla, this isn't right. It's not right. It's so. not. right.

I'm sorry, my baby, you deserved so so very much more!

Day 72

You were well today Miks... you slept well, and were quite happy. I bought you a little bouncing chair to lie on, including all the bells and whistles (or rather, the music and moving monkeys and vibrations)... we put you in it this morning, and you went rather wide eyed at all the activity!! It was very cute. Unfortunately you're quiet and alert for long... I really think you cannot handle too much stimulation. But it was sweet nonetheless. And then, after all my worry and talk of looking further into the pooing option... well, you were functioning normally and happily this afternoon! I hope it lasts.

Me? I was rather sad tonight. I'm sad cos I realised today HOW MUCH I wanted all those wonderful baby moments... the gurgling, the kicking of feet, the little giggles, the smiles. I want to cuddle and be cuddled back. I wanted so much to experience that again. I wanted that for you. I wanted my boys to experience that with you. And I still long for a happy healthy baby.

I love you... and don't worry, I won't dwell in the sad place long. Every now and again I visit. Remember. Reminisce. Wish. Hope. Dream. Then the reality settles. I shake myself up. And know that I can't change things. So we'll make the best of it. Tomorrow is another day. And as one of my new T18 mums writes in her emails... something like "don't worry, the world hasn't ended.... it's tomorrow in Australia already".

And besides, there's nothing that a good sweet cuppa tea can't fix.

Oh, and it was your big (little) brother's birthday today. 5 years old. We had a good quality family meal at Spur... which you were not going to miss for the world!! You funny little girl!

Days 67 - 71

Another busy week! Miks hasn't been too well. Well, technically she's been fine... but she's just been rather grumpy alot of the time. I gave her suppositories for 3 days, and then moved onto the sugar water in the hope of solving what I believe to be a pooping problem for her... and I must say, things really started to improve.... much to Russell's dismay.... I say this, because they improved in the bath, while he was bathing with her.... all I heard was frantic little yells from Russell, only for me to go into the bathroom to find a distraught baby and husband... and a bath laden with poo.... needless to say, it was followed by a shower :-)

But Miks has been fretful, and doesn't want to be put down, which is exhausting. And today she has been eating really badly, after having two frantic down-downs this morning, the next 3 feeds I really battled to feed Miks. And yet she seems hungry, but won't eat. I hate it. Not only does it frustrate me immensely... it also obviously worries me. It's hard to plan, or to have a guideline to work from or towards, when none of the standard rules apply.

I eventually succumbed again, and gave her another suppository in the evening, and she finally settled. After basically carrying her for 2 days, I am pretty stuffed! Really, I need to sort this out somehow.

You know, I have come to a few realizations... revelations, if you like. About me. About us. About life as I see it.

Firstly, life is all about choice. There is very little in life that isn't dependable on choice. Sure, there are obvious things that are not down to choice (like being in a car accident for example). But ultimately our destiny, our relationships, the things that matter, simply come down to the choices we make.

I can choose to dwell on the sadness of our reality. I can choose to live in the sorrow of broken dreams and hopes that I had for us as a family, and for Mikayla. Everyday... every moment, is a choice. Jesus said that "The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full." John 10:10

The devil tried to steal my joy. He tried to tear us apart by taking that which he KNEW meant the world to me. He's no fool. He knows where our hope and our dreams lie... and he will do everything to take that from us.

I won't let him. Why should he win? I am a child of God. I love Jesus Christ. And there is NO WAY that I will allow the devil to take so much from me. Mikayla's disorder is NOT of God. The devil may have been able to take her "health".... but he doesn't have my daughter. And he CERTAINLY won't have me. That's the choice I have made.

I also know that there are things we simply don't know. And while death and suffering is not of God, sometimes the we are angry at God for allowing death? But Isaiah 57 says this:

"The righteous perish,
and no one ponders it in his heart;
devout men are taken away,
and no one understands
that the righteous are taken away
to be spared from evil." (Is 57:1)

We see only the immediate. God sees the past, the present and the future. Who's to say why He allows death? Perhaps it's to save us from future suffering?

This brings me to my next revelation which is that I know that God is a God of restoration. He didn't send His son to die on a cross for us so that we would suffer. Jesus restored. He restored a man's sight. He restored a man's hand. He restored a woman's suffering health. God didn't do what He did to make us live in sorrow and dispair. He didn't send Jesus as a reflection of death... He send Him as a reflection of LIFE. Jesus came to set us free. When I think of the word LIFE, I think of awakening... of a new dawn.... of new beginnings.... of happiness. And yet we live in our dispair, our sorrow, our anger, our defeat, our suffering... waiting for God to make things better. And yes, I believe He will... But what I also believe, is that HE ALREADY HAS. But while we are sad, and cannot fathom what we are enduring, I take comfort from what Peter said, which was this:

"And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast." - 1 Peter 5:10

And again, remember this:

For his anger lasts only a moment,
but his favor lasts a lifetime;
weeping may remain for a night,
but rejoicing comes in the morning. - Psalm 30:5

The devil stole from me. God will restore. I have to believe that. And so daily, hourly, I make the decision to stand steadfast in God's truth. No matter what the world is telling me, I CHOOSE to believe God. That's not easy. But I will not let the devil have the upper hand in my life, because regardless of what I live in today... I have an eternal hope. And that which God doesn't restore here on earth, He will restore in heaven.

Day 66

Got to talk to the pediatrician today. We're going to give you the suppositories for 3 days, to make sure we've "cleared your system", then we're going to give you an old home remedy of brown sugar and water to soften your stools, and hopefully get you more comfortable, before we look at other forms of "laxatives". I hope they work, Miks, cos all I want is for you to be comfortable.

You were very unhappy this morning, but seemed to be better during the day. Then, this evening you were very unhappy again. I had put you in your bed, and you were really very miserable... but I had to run around sorting out the boys and whatnot... eventually I got back to you, and when I picked you up, you tucked your face into my arm as if to say that you were SO HAPPY that I was holding you... and you fell asleep instantly!! You do seem to wake quite alot- and mostly rather fretfully. Not sure if it's your breathing that's bothering you.... but just know, my baby, that I am here... even if I am in the room next door... I am here.

You were also so sweet this afternoon (before you got grumpy)... you were lying in your cot having just fed, and I came in and said your name, and you turned to me... and just STARED!! I felt really quite loved.... and I thought you were going to smile... but you didn't :-( You were even charming the socks off your Dad (mind you, you do that quite easily... you have that man wrapped around your little finger). I just love it when you seem so alert and, well, somewhat ENGAGED. It makes it all worthwhile.

But now it's late, princess... and you're no doubt going to wake us up any minute... so off to bed I go.

Day 65

Miks, you were so good this morning, but by this evening you were quite beside yourself. You seem like you're in pain...

I gave you a suppository again, and it helped you poo, but you've still been terribly unhappy.

I hate seeing you look so... I dunno... uncomfortable? Sore? Frustrated? Maybe you're just fussing.... I dunno.... but tonight it's worrying me.

So enough blogging for tonight.... I'll try again to console you.

And being the effective mother I am... I have no Calpol!! The only painkillers I have are for children over 2. My goodness... talk about bad planning.

Coming baby.....

Day 64

Checking mum out

Isaiah 55

Invitation to the Thirsty

"Come, all you who are thirsty, come to the waters; and you who have no money, come, buy and eat! Come, buy wine and milk without money and without cost.

Why spend money on what is not bread,
and your labor on what does not satisfy?
Listen, listen to me, and eat what is good,
and your soul will delight in the richest of fare.

Give ear and come to me;
hear me, that your soul may live.
I will make an everlasting covenant with you,
my faithful love promised to David.

See, I have made him a witness to the peoples,
a leader and commander of the peoples.

Surely you will summon nations you know not,
and nations that do not know you will hasten to you,
because of the LORD your God,
the Holy One of Israel,
for he has endowed you with splendor."

Seek the LORD while he may be found;
call on him while he is near.

Let the wicked forsake his way
and the evil man his thoughts.
Let him turn to the LORD, and he will have mercy on him,
and to our God, for he will freely pardon.

"For my thoughts are not your thoughts,
neither are your ways my ways,"
declares the LORD.

"As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.

As the rain and the snow
come down from heaven,
and do not return to it
without watering the earth
and making it bud and flourish,
so that it yields seed for the sower and bread for the eater,

so is my word that goes out from my mouth:
It will not return to me empty,
but will accomplish what I desire
and achieve the purpose for which I sent it.

You will go out in joy
and be led forth in peace;
the mountains and hills
will burst into song before you,
and all the trees of the field
will clap their hands.

Instead of the thornbush will grow the pine tree,
and instead of briers the myrtle will grow.
This will be for the LORD's renown,
for an everlasting sign,
which will not be destroyed."

Thank you, Jean, for the inspiration :-)

Mikayla, on a side note, did you know that your name means "Who is like God". Indeed! Who is?

Having your bath

You were quite restless this morning, but sweet in the afternoon, and very sweet in your bath. But oh so grumpy when we were trying to get you to bed.

We are called, as Christians to be the salt and light to the world. Jesus said: "No one lights a lamp and hides it in a jar or puts it under a bed. Instead, he puts it on a stand, so that those who come in can see the light. For there is nothing hidden that will not be disclosed, and nothing concealed that will not be known or brought out into the open. (Luke 8:16-17). But what was pointed out to me tonight, is that a lamp and a light, makes no sound. So it is our simply being that will shine. Like you, Mikayla. You have not said a word. You too, are a light to the world.

Shine, my baby! Shine!

Day 63

Miks, I know you get frustrated sometimes. I know that you find pooing a very uncomfortable, sometimes impossible experience. I am sure that sometimes the pressure on your lungs makes you sore. I know that you hate having your muscles worked and stretched. You have been so strong, and brave; and we're so happy that you haven't had major defects that could have caused you immense pain. We're so grateful for that. But please know that every little hiccup you have along the way, well, please know that Daddy and I are doing everything we can to make you as happy and as comfortable as we can, while still thinking of what the future could hold. We need you to do the stretches for your own comfort, as well as ours.

I caved again tonight, and gave you another suppository. You were just impossible today- wanting to be held the whole day practically. By the evening, Mummy was exhausted. Well, you had such an enormous poo.... infact, TWO! I am sure that I cant keep giving you suppositories to help you (and I hate giving them to you anyway), but I am not sure what else to do? I will call the paed on Monday and chat to her.

You slept like an absolute star tonight, waking up at 1am, and then only again at 5:45am. Would love to be able to push out your feeds more, but I'll only be able to do that if you eat more at your feeds, which I highly doubt will happen.

I keep thinking about something that Luke used to say (wise 6 year old!!):

"You get what you get, and you don't get upset"

Day 62

Mickey, I honestly feel sometimes like this is all just nonsense, and people are going to tell me that I've made a mountain out of a molehill, and really, I must stop being so overboard. Not that I am overboard, mind you. For the boys, I won't be that complete collapsing weeping willow. They need me to be strong. Not that I am strong mind you. I think I just am what I am, and like I keep saying, I am not more or no less than anyone else would be in my situation. I really believe that. By God's grace, we are given ability well beyond our imagining, if we allow Him.

And you, Miks, you are so unbelievably strong. You surprise me daily. No major things really... just by your ability to kick that extra chromosome, that says you shouldn't live, in the butt, and say that your life is on yours and God's clock, and no-one else's.

And everyday you etch a little more into my life. Into my heart. Everyday, I am a little more of what I am because of the little bit more that you are in me. How is it that without saying a word; without all the cute little magic moments that "normal" babies provide, like smiles, you are still so much my precious, gorgeous girl, who we love so very much.... even when we're mad at you, cos you won't sleep :-)

Happy 62nd life-day, my darling.

Oh, and your poor brother had an altercation with the road today... erm.... and the road won:

Day 61

Remember that you are no more or less special than the next person; and your ability to soar in the face of adversity is not based on anything other than your willingness to try, and the wonderful knowledge that the human spirit is so much greater than you think; and of course that God gives you the courage and the strength to deal with things as and when you need it. I think all too often we underestimate ourselves, and those around us. We box others, and worse still we box ourselves. Why? Is it fear? Is it low self esteem?

You have wings! You were made to soar!

"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." - Isaiah 40:31

You have unimaginable strength.... because it comes from your almighty Father. Creator of the universe!

"It is God who arms me with strength and makes my way perfect" Psalm 18:32

Me? I am searching for feeling again. My worry is that as we have lived this journey with Mikayla; I have hardened somewhat. Have I become like stone? My heart breaks for Mikayla, and yet no tears come. But maybe by living in the now, I am learning to cope with my grief, because as she is now... well, she is alive. She is already a medical miracle in some ways. She has surpassed all our expectations already. That I shoudl celebrate.

Probably the hardest thing is that she isn't progressing beyond being a newborn baby.... so things like sleeping through look like they won't ever be a possibility with Miks, because she doesn't eat enough food to extend her feeds that far apart. I confess, it's exhausting! I know, in the face of everything, it's a fairly minor issue... but it's an issue nonetheless!

Miks again wanted to be held today. Perhaps she is just learning that it's quite nice to be held, and that if she moans enough someone will carry her around. There are times it's special... and other times it's simply frustrating (like when I am trying to cook supper!). She's eating well though.

But I know Miks. And I know her little sounds. Her funny facial expressions. How she loves her bath, but hates being dressed. The funny sound she makes when she sneezes (like a little yell, actually... it's really cute). I know the way her skin feels against mine, the way she smells. I love the shape of her nose- the pertness of it... her cherry lips. She's my little girl. My daughter. And for that, even with all the sadness that sometimes consumes me... I am still grateful in the small things.

Today is a gift, That is why they call it the present

Many people will walk in and out of your life,
but only true friends leave footprints in your heart.
To handle yourself, use your head; to handle others, use your heart.
Anger is only one letter short of danger.
If someone betrays you once, it is his fault;
if he betrays you twice, it is your fault.
Great minds discuss ideas; average minds discuss events;
small minds discuss people. He who loses money, loses much;
he who loses a friend, loses much more; he who loses faith, loses all.
Beautiful young people are accidents of nature,
but beautiful old people are works of art.
Learn from the mistakes of others.
You can’t live long enough to make them all yourself.
Friends, you and me. . . you brought another friend. . .
and then there were three. . .
we started our group. . .
our circle of friends. . .
and like that circle. . .
there is no beginning or end. . .
yesterday is history.
Tomorrow is a mystery.
Today is a gift.
That is why they call it the present.

- Eleanor Roosevelt

Days 59 & 60

My poor little poppet has really been battling with this no-poo saga! Gosh, who would've thought 10 years ago that my life would be consumed with the wonderful world of the nether regions! I finally caved today, and gave her a suppository to help her poo... and sure enough, it all came out.

The thing is, I can tell that that's what the problem is. She gets grumpier and grumpier.... and eventually gets to the point where she doesn't want to be put down.... she just wants to be held... not ideal when friends come over to dinner like last night (actually brought dinner to us, nogal! And what a dinner it was... Jamie Oliver look out! Seriously!). So yes, the heart-felt mum in me took over, and threw all reason out the window, and helped her do her business. Of course, the reality is that I should be cautious with giving suppositories to her to help her all the time lest her body gets used to is, and loses all knowledge on how to perform on it's own. But really, I am a mum, what else am I supposed to do? Realistically it's not just a comfort thing either. She battles to eat... which seems fairly obvious since she is technically FULL, as her body isn't getting rid of waste the way it should.... and I bet that probably makes her lethargic having all those toxins still in her little body. Shame... my poor little darling.

But she was better tonight, and is sleeping soundly. I got to have another special bath with her... and otherwise all is well in the van clan household :-)

60 days already. Who would've thought!

Day 58

I love it when her eyes are wide open like this. She just seems so normal!

Miks had a great eating day today. Eating 75mls at pretty much every feed. The only difference being that today she just seemed to want to be held a lot longer. To be honest, I quite liked the excuse to cuddle! We also had the most wonderful bath, Miks and I. She lay on my lap, and was gazing around, and spent ages just staring at me. I keep thinking at any minute she'll smile at me... but alas no! Luke gave her a kiss, and when he pulled his head away, she turned her head as if to look for him.... maybe she was looking for him... who knows.... but it was precious to watch.

My little Mickey Mouse!

It's strange, some days I just think she'll live forever, or rather, live a full life like any normal child. But then none of us knows what tomorrow holds, do we?

The boys giving Miks a cuddle. They just adore her so much, and often compete for her attention, or to sit next to her, or whatever. Cute, although occasionally exhausting dealing with the arguing!

Days 53-57

A kiss from her big brothers!

Really, I don't know whether I am Arthur or Martha these days (although, I'm pretty sure it would be more likely Martha, or I'd have a serious problem!). On Wednesday we moved home, and it's been amazing back home. Miks didn't like the move so much- as she ate terribly on Wednesday- she definately doesn't like too much going on around her. But by Thursday she was settled, and had a great day of feeding. She's definately grown some.... she's got long more than anything else. I just wish she'd also get wider, because then she'd fit into more of her clothes than she currently does. How is it that all the 0-3 months clothes are so differently sized? I guess that's a blessing in some ways- but it can also be terribly frustrating!

We all don't know ourselves with all the space we have. Luke and Josh are in their own rooms, and of course Miks is in hers. We've learnt a new trick: because Miks is so fussy about the temperature with her bottle, we're always having to reheat her bottle, or constantly fill up a cup with boiling water to sit the bottle in to heat it up.... which then gets forgotten about, and ends up too hot, so then we have to cool it down... it's a real dog show! Anyway, Russ figured out that if we put the bottle on the heater while burping her, it keeps the bottle the right temperature, or rather doesn't heat it up too much that we have to cool it down. It's like our own personal little bottle warmer (can't market the idea unfortunately, as it's not terribly practical, since you can't fit a heater in your handbag... and besides, there is such a thing as a bottle warmer... nifty things!). Now I've just got to find a way to keep my tea warm.... I always forget about it and end up having to drink cold tea. Ugh!

Miks has really been up and down most of the week. She definately battles with a certain amount of constipation, which effects her feeds, because she gets desperately hungry, but when you feed her, the minute she starts drinking she fights the bottle, because she is all stuffed already since she hasn't got rid of all the previous feeds (er... pood!). I just feel so sorry for her. I hate feeling so helpless most of the time. Like I cannot really help her that much. Obviously I can help alleviate some things, like occasionally giving her a supository to help with the pooing, but I cannot essentially change her "disease"... cannot help it, make it better... nothing! They say "better the devil you do know than the devil you don't"... and sometimes thats what I feel like with Miks, that this "devil" that courses through her veins in every cell.... this sneaky little disorder which creates havoc amongst her cells ability to function properly... is the devil we don't know. Even the doctors don't know!

Her unhappy face! Mind you, with me dressing her up in all my hats, I am not surprised she was unhappy!

I also try savour all Miks little milestones, but just wish she would also show some of the more normal milestones like kicking her little legs around, smiling, following me with her eyes around the room all the time, turning her head to my voice. All these milestones that I took for granted with the boys, I wish so desperately for Mikayla. I am trying to enjoy her for what she is, rather than what she isn't- but at times, having a comparative view, makes it not terribly easy.

Had a frustrating day today feeling a little "ungraceful".... sometimes I just don't want to hear anyones ignorant advise. When I have the specialists, doctors and geneticists telling me one thing, I find it terribly unhelpful having people's well meaning "professional opinion" on Mikayla's condition. Surely if the layman had things to tell me, the doctors, and other people who have been in my position, would know about these things?! I mean.... I just want to say sometimes "get over yourself!" to these people. But I know that realistically I am the one who has to get over myself. Pull myself towards myself, and just take the "advise" as well meaning rubbish :-)

A lesson I have learnt though, is that sometimes my opinion, or experience, as much as I may think it will help the next person, doesn't actually always help. And perhaps sometimes the most helpful thing we can offer is an ear... NOT a mouth.

"Reckless words pierce like a sword, but the tongue of the wise brings healing" - Prov 12:18

Definition of "reckless": very careless; acting or done without any thought of the consequences

Definition of "wise": Having the ability to discern or judge what is true, right, or lasting; sagacious

Definition of "discernment": The act or process of exhibiting keen insight and good judgment.

So, to elaborate on the Proverbs verse, using the dictionary explanations, we could say:

"Careless words, said without any thought of the consequences, pierce like a sword, but the tongue of someone who has discerned what is true and right, through good judgement, brings healing".

Hopefully I can learn to be more discerning in my well meaning advise to other people, so that I am not inadvertantly hurting them- which I am learning is too easily done!