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!