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: