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!