Trust

Mikayla being "thrown" by her Daddy. She always loved this. And let me tell you, Mikayla was always quite clear on what she liked and didn't like!

You know, the last 2 years have really shaken my world. Everything we have been through has really challenged everything I believe in. That's not to say my belief system has changed. No. If anything perhaps it's stronger in some ways.

The word that kept hitting me this last weeks is "trust". And I mean, everywhere. It popped into my head (invariably this is how alot of my posts come about: a little pop! in the head! Not sure if that's a good thing, or a bad thing?). But it keeps appearing at me: a movie title, a verse, a song... So I've been thinking about how trust has been an issue for me over the last two years.

trust  (trst)
n.
1. Firm reliance on the integrity, ability, or character of a person or thing.
2. Custody; care.
3. Reliance on something in the future; hope.

v. trust·ed, trust·ing, trusts
v.intr.
1. To have or place reliance; depend: Trust in the Lord.
2. To be confident; hope.

Synonym: faith
These nouns denote a feeling of certainty that a person or thing will not fail. Trust implies depth and assurance of feeling that is often based on inconclusive evidence.
Faith connotes unquestioning, often emotionally charged belief

You see, when all control is out of your hands. When you have no ability to change the course of something. Who do you rely on? Who do you trust? That was hard for me. It still is. When the world around you seems to have their prayers answered, when it seems like God is helping pull other people out of their "ditches", it's really hard to trust that at some point He'll do the same for me. Now, I'm not talking blessings here. That's a whole other thing. Let me be perfectly clear here: We have been blessed in abundance. Even through all we've been through, we have been immensely blessed. And I am so very very grateful for those blessings. But we're also talking the life of my daughter here. It was her LIFE I lost. Not my car. Not my self esteem. Not my pride. The LIFE of my daughter. How do you quantify that? Aside from all the good that has come of it, how do you justify the loss of a life? Not easy.

And through trying to trust God in the last two years, and frankly, having been "let down", how do I continue to trust? Why don't I give up? We've all heard this before: "trust is earned". However, based on the description above ("Trust implies depth and assurance of feeling that is often based on inconclusive evidence"), this is not entirely true.

People were often horrified when they saw Russ playing with Miks. He'd hold her upside down, and throw her in the air. But Mikayla? She loved it. She'd pull her squidgy face, and grin from ear to ear. Russ didn't earn her trust. He simple had it. Did you know that babies naturally don't like a falling sensation, which is why when you lower a baby in a bath, they will cry... Because they don't feel secure. But our babies trust us as parents. Ok, I will admit, in part it is "earned", but I think, for the most part, they trust us based in "inconclusive evidence". In my life, in the last two years, based on prayers I have uttered, I don't have conclusive evidence to trust God. Look, before you shoot me down, I realize that there is very much conclusive evidence of God's goodness and the assurance that we can trust Him... You just have to look at the cross to see it. But, for the purpose of my point, go with me on it.

The thing is, that I do still trust God. For starters, what other hope do I have? (that's the pessimist in me)

But its more than that: The last few weeks, I have really felt like God wants me to let go. Let go of the sorrow. Let go of the frustration. Let go of the disappointment. Perhaps even let go of my dreams. He wants me to let go. To breath out all the sorrow of the last two years. And I believe that when I do that, something will happen. I don't know what. I really don't. Maybe it'll simply be a release of any hidden burden I may be carrying, and it will set me free. Maybe it'll be more than that. Maybe, as a dear friend pointed out, it will be me finally forgiving God. And, while He certainly doesn't need my forgiveness, perhaps in forgiving Him, I can break down any wall between Him and I (that I have built), and repair our relationship (only needed on my part), and build a closeness, that perhaps I have lost. And then hopefully I will feel in my heart, the trust that is in my head.

I feel like He is saying "trust me, my child". Maybe when I really embrace that trust, when I feel it warm me to my core, He will throw me up into the air, and catch me again, while I giggle in His embrace.

Psalm 13

How long, LORD? Will you forget me forever? 
How long will you hide your face from me? 
How long must I wrestle with my thoughts 
and day after day have sorrow in my heart? 
How long will my enemy triumph over me?
 
Look on me and answer, LORD my God.
Give light to my eyes, or I will sleep in death, 
and my enemy will say, “I have overcome him,” 
and my foes will rejoice when I fall.
 
But I trust in your unfailing love; 
my heart rejoices in your salvation. 
I will sing the LORD’s praise, 
for he has been good to me.

I am placing my reliance in and depending on, The Lord, my Heavenly Father.

Days 362 - 367 Birthday Celebrations!

Yesterday was your birthday. Happy birthday my little angel princess!!


I wanted to so much to make it a special day for you. Not just because it is such an accomplishment... such a grand day for you... but just because I wanted, personally, to honour you. You are who you are, and have done as well as you've done, DESPITE me. And no matter how many people tell me how amazing your Dad and I are because of how well you've done, I know that it's only because of you, and our Father in Heaven that you have made it this far- and with flying colours! You continue to amaze me... and everyday another little snippet of who you are comes out, making you more and more you.

You have taught me SO much. You've taught me about your father, and your brothers, things perhaps I might not have known. I have seen strength and courage shine through the boys in my life, that I may not have noticed so prominently had it not been for you. I am surrounded by these strong boys (and your Dad), who I feel very privileged to have in my life. Tender, loving boys, who I know will do their wives great justice. Who will honour, respect, and love the woman in their lives, because of how they have learnt to love because of you. A non-critical, sincere love based on nothing but the raw emotion of love itself.

You have taught me so much about who I am, and who I want to be. I have learnt to perhaps appreciate the small things more. I have a long way to go- because I still get sulky and bitter sometimes, but I don't take the small achievements for granted anymore. I am possibly a little less critical. Possibly a little more understanding. I hurt a little more for others, because I perhaps understand pain a little more than I did before. I am a little better at processing my disappointment than I was before, and perhaps a bit more learned when it comes to understanding that, as much as I wish it was, my life is quite simply not about me. You have taught me that I am stronger than I thought I was. Perhaps even I am a better mother than I thought I was. I understand now what a privilege being a mother is, and how, although our children are a product of us, they are also their own people; and that our responsibility as parents to find that special spark within them, that innate potential that they were born with - despite us, not because of us- and to nurture and grow it, so that they can be the best people THEY'RE meant to be. Not the people we expect them to be. And that perhaps somewhere along the way, these little people can teach us so much more than we can teach them.

Your life is also a testament to the fact that all our days are numbered in GOD'S great book. Not ours. And the value of living for today and what it has to offer, is so much greater than all the BIG things in the future that we have planned, and the failures of the past that we allow to define us. That making the most of what we are, who we are, and where we are today far outweighs the value of Our-Great-Future-Potential, or That-Thing-That-We-Thought-We-Would-Be-But-Life-Threw-Us-A-Curveball-And -Now-We're-Not.

I did not ask for a disabled child. It was not in My Big Plan. But you know what? I got it. I got you. And I am better for it. Would I change it? Oh, you betcha! In a heartbeat! Of course I want you to be "normal", partly because it would suite my plan... but also because of all the things I know we're going to "miss out on". But you are teaching me slowly that if I live my life always thinking about what I missed, and lost, and may never gain, I miss out on little magical moments from today, which will enrich my life so much more than the things I "wish I had".

Your life, while miraculous, is not a miracle. You are not walking, and going off to main stream school. Your T18 hasn't gone away. Your prognosis is still what is is, although you fall into a small percentage of children who have lived beyond 1 year. So when people talk about your life being a miracle, I can be cynical, and kind of, well, no, your still being alive is not a miracle, it is a strong fighting spirit that you have, and the fact that on the T18 spectrum, you are a "healthy child".

BUT.... AND THIS IS WHAT IS IMPORTANT.... The miracle of your life doesn't lie in your healing or lack thereof. It doesn't lie in the number of days, months or years that you are alive. The miracle of your life, is that you have managed to show people the VALUE of what life is, without you ever having to whisper a word. That you have touched lives, without ever physically reaching out. That you have made me realise that miracles are not always BIG things. Sometimes miracles are unseen and unheard. And I think those miracles are just as valuable as the "big ticket" items.

My hope is that your life teaches people the value of really living.

Happy birthday, my special girl. I love you dearly.

Days 263 - 265 To Operate or Not to Operate?

I went to the pediatric dietitian on Tuesday. And while she didn't tell me anything I didn't already know, she has slightly changed Miks' eating plan, and, well, we have a plan now at least.

We have loaded her feeds (formula to water ratio), just a little, to try increase her calorie intake, and we are also trying to aim to also have her increase her fluid intake in the form of water, to hopefully help address her constipation issue. This we will do for one week. Then, week 2, we're going to attempt solids again- and the dietitian also gave me some great tips on "bulking" her solids to increase her calorie intake without having to necessarily make her eat MORE... so clever! Her biggest concern was that Mikayla isn't currently getting sufficient calories in her system, even for her size, which is why her weight seems to waiver around 4kgs. Obviously this has implications not only on her size, and her growth, but also her neurological development. Plus, without sufficient calories being taken in, she doesn't have sufficient energy, and since her energy expenditure is already so much for her, because of her low muscle tone, it is in part her reason for being unable to eat more than she currently eats (she just tires out too easily)... so it's a vicious little circle!

Which brings us to the next possible plan of action, which is to have a G-tube inserted directly into her gut. The idea here is not to stop feeding her orally, but rather to use the G-Tube to increase her feed intake, thereby increasing her calorie intake. At the same time, we could use it to give her more water, which will hopefully help with her gut issues. And this can all be done without her expending any energy whatsoever.

I have my concerns, obviously. The operation itself is not a major operation by any means.... the procedure itself takes only about 10 minutes, and the "wound" takes not even a few weeks to heal- kind of like a pierced ear would heal. The issue here though is that, for any person, there is risk involved due to the anesthetic etc.

Obviously with Mikayla, we don't know firstly how she will react to the anesthetic, nor whether her heart will cope with it. We also are not sure whether her heart defects have worsened over time. Also, as is standard procedure, she will be ventilated whilst on the anesthetic, and we don't know whether she will cope easily when trying to come off the ventilator. At this stage, we will obviously have to sit with the surgeon and anesthetist, and discuss all the risks. The anesthetist may require that we take her to the cardiologist again to have another check of her heart.

I am not sure how I feel about it. I think the operation is a necessity. If it helps her put on weight, there is a good chance she could sleep better, for one, but also be a happier, more content baby- which is good for her, and good for us. But there is a certain amount of fear: if something goes wrong, and something happened to her, would I blame myself? I would hate to feel RESPONSIBLE for her death. Anyway... we are just in exploration stage!

She has been very unhappy lately, in the sense that she wants to be held constantly... now, I do actually love cuddling her... but carrying her around while I am trying to cook supper, or late in the evenings, when I am tired, is not fun! On Sunday and Monday night, she was VERY unhappy during the night- in fact, on Sunday night, she was awake for 2 1/2 hours in the early hours of the morning... which was really taxing on me. But last night, albeit she had had a terrible time getting to sleep, she slept from about 9pm til around 1am, and then straight after that feed, slept again til 7am!! She was also very happy this morning... so I thought perhaps we had turned a corner... but alas, this evening she has been really unhappy again... just crying constantly :( Russ is funny, cos he can ignore her crying, but if I can hear her, it makes me really uptight... completely stressing me out... and after HOURS of it, I feel like a wreck!

*Sigh* I just pray that there is a day when she turns her corner, because I long for her to be happy, and content... for me, yes, but also for her!

Day 40

Day 40. Forty. Four zero. Wow! Sounds quite impressive. If I was forty, I'd feel old (I'm still on the uphill 30-something slide... let me enjoy it while it lasts!). That' my Miks. FORTY days old.

Mikayla had a great morning... guzzling back her [ridiculously expensive] formula. She was a happy little camper. The afternoon...not so. She got progressively angrier and angrier.... she guzzles down her food, which then give her winds, but then she wants to suck through the discomfort... more winds. Didn't want to lie down. Didn't want to be held up. Didn't want to be cuddled. Wanted to eat. Didn't want to eat. Just overall pretty cross. Not sure if she's perhaps cross that her mother made her eat the cheap formula this afternoon... or maybe she's got a sore tummy (you know, poo story again)... but she was just angry. In fact, during her 2am feed, she was even shouting at me. Yes, my 5 1/2 week old baby actually SHOUTS at me. It's quite a thing really, being shouted at by your tiny baby. She doesn't cry. She shouts. Such attitude :-)

So, you've all heard this: attitude = altitude.

I decided it should be: perspective = attitude = altitude

Have received so much encouragement from other T-18 mums and dads out there. It's a whole other world, which I never knew existed. Families conquering through their "new normal". Families dealing with tragedies, and small milestones, and even little miracles daily. It makes me wonder why I was so tuned out before? There are people all over the world, probably just on our doorstep, dealing with such enormous decisions and challenges. And yet we can be so oblivious to it! I hope that my eyes are opened to the world around me, that I might reach out and touch those around me.

I read this today, and I liked it:

John 1:16 (NIV)
From the fullness of His grace we have all received one blessing after another. [italics mine]

Perspective people. Perspective.