Eternity in our Hearts

Last night I couldn't sleep. I couldn't stop thinking about you.

I was remembering you just before you passed away in the hospital... You had got so LONG. You were looking more and more like a toddler (in length) than the baby you had remained for so long. And I got really sad about it.

If you had lived a long "earthly" and "normal" life.. well... I often think how you would have been. I think you would have been blonde. You would've had the biggest blue eyes. You would have been so very beautiful. I think Daddy would've had his hands full if you had been a teenager. You would've had a pale creamy skin, maybe freckles on nose.You would've had long delicate fingers, but your mothers butt (shame!). You would've had a great sense of humour. And would've been doted over by your brothers endlessly.

But you're not here any more. Death took you away. And it hurts so much. You see, we were created with Eternity in our hearts. Every single one of us. Ecclesiasties 3:11 says this: "He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end." (Bold mine)

That's why death is so hard, and so WRONG to us, because we have eternity in our hearts. How, when our hearts are living with eternity, can we accept or fathom death when it is the opposite of eternity? Death is so final. In earthly and human terms, it's the END of something. But eternity has no end. It's such a conflict, and I believe why we struggle so much when we lose someone.

I guess the other end of that coin, is that death ISN'T the end. Death has no power over us. You see, Jesus came that we may have LIFE. And while that's Life In Abundance while on earth, it's also LIFE beyond this earth.

I have to remind myself of this... often. To know that while I have missed out on so much of YOU on this earth... I will (hopefully, if I get my act together), have an eternity to know you. And maybe in Heaven I'll get to skip with you, hug you, do your hair in plaits. And to see those big blue eyes....

Oh how I miss those eyes.

After it all

It's unreal to think that nearly 2 weeks have gone since you left us. Sometimes I wonder if the last 2 years was all a dream. But then I see your sweet little face smiling at me from a frame on my wall. And I remember.

Life is not the same anymore. Everything is so simple now. We have moved into a new chapter. Would I change any of it? Well, if you asked me if I could have a choice between going through the last 2 years all over again, in the same way, or having never known you at all: I would do it all again. One hundred times over, to know you even for a day. As hard as it was, and there were some really hard days- with the advantage of hindsight I now see just HOW hard some days were- you, Mikayla... you were so worth it!

The week after you passed away was such a blur. We were so busy making various arrangements, it seemed to just fly by. But on the Thursday, your ashes came. That shattered me. Suddenly it was so real.

Then we had your service on the Friday. What an amazing tribute to the most amazing little girl. I even had something to say (surprise, surprise!). I thought I'd share here what we said at your Celebration of Life service, as well as the video I made for you. I hope we honored you. You were worth honoring.

I miss you. Last night I walked in the house (we'd been out to dinner to celebrate our 10 year anniversary, thanks to our wonderful friends, Dyl & Tes), and the carry cot you were always in, had some toys in it, and out of the corner of my eye, I thought it was you. But then I remembered.  I know where you are. I know that in Heaven you will have a new body. You are free. My friend Barbara had a dream about you: you were running around Heaven in a Minnie Mouse outfit, delighted at the fact that your arms and legs were doing what you wanted. And Jesus was with you- laughing at your delight. And I know that's just what is happening (ok, maybe not the Minnie Mouse outfit... Ha ha). I find comfort in knowing you are safe, and well, and that I will see your beautiful face again, and perhaps get to feel your arms wrapped around my neck, and you saying you love me.

We notice your absence. It's like an appendage no longer there. But we're doing okay. The boys miss you terribly. But we will always feel your absence... In time, it just won't ache as much, I guess.

My biggest fear is that I did not give you everything I could. My hope is that I DID honour you. That you knew it. So much of who I am, and who I want to be, is because of you. I don't want your story to end. I hope that you will continue to change people's lives... And if I am that vessel for that to happen, then my prayer is that God will open those doors for me, and give me the grace and the capacity to make that a reality.

I believe that as you left my arms, and Jesus held you on the other side, that He gazed down at you, and with a radiant smile on His face, said "well done, my good and faithful servant". You were not given a perfect body, or a perfect mind. You were not given a "full" earthly lifetime. But you gave us all so very much. So much more than we deserved. Thank you, my baby girl.

From the service on the 16th of September:

My eulogy to you:

"On the 08th of May 2010, a baby was born with Trisomy 18 otherwise known as Edwards Syndrome.

In an instant our world turned inside out.

I could tell you about heart defects, clenched hands, rocker bottom feet and webbed toes. I could tell you about delayed growth, mental retardation, poor eyesight or hearing. I could tell you the statistics of life expectancy and how 30% die in the first month, and 90% within the first year. I could tell you that this disorder is  "incompatible with life."

But I won't.

Instead, I'll tell you about a little girl with the biggest blue eyes you've ever seen. A smile that would light up an entire room, and the sweetest laugh. A little girl who loved her Daddy. Who's sweet little toes would curl when you touched her feet, and who would giggle at the feel of her Daddy's stubble. A little girl who's face would light up when her Daddy came into the room, and who just loved the attention of her brothers. A little girl who found her way into your heart, and made herself at home there. A little girl, who, by worldly standards, was nothing great, and yet she touched hundreds of people from all over the world, without having uttered a single word. That little girl was my daughter. Mikayla.

Miks, Thank you. Thank you for letting me be your mum. Thank you for showing me the value of life, and what really matters. You taught me so much about the human spirit through the generosity  and love of both friends and strangers alike. Thank you for showing me how amazing your Daddy is, for letting me see sides to him, and your brothers that I might not have seen. I am so proud of them. Thank you for bringing so much joy into our lives. You had a fighting spirit like no one I've ever known. You did not let your disorder define you, but rather carried the days of your life, numbered before the beginning of time, in Gods great book, with a gracefulness that far surpassed your years.

You changed me. Forever changed me. You somehow made me into a better person. I am quite simply better for having known you.

You. Are. My. Hero.

In an instant you changed our world the day you were born. And 491 days later, you took your last breath in my arms, and have again flipped my world inside out. I will miss you. Forever miss you.

I hope when I grow up, I'll be like you.

Fly high, my little warrior princess.

My song for you. The first and last song I ever sang to you:

"In my daughters eyes, I am a hero.
I am strong and wise, and I know no fear.
But the truth is plain to see, she was sent to rescue me,
I see who I wanna be, in my daughters eyes.

And when she wraps her hand around my finger,
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about
It's hanging on when your heart has had enough
Giving more when you feel like giving up,
I've seen the light... It's in my daughters eyes" " (In my Daughters Eyes - Martina McBride)

Daddy's eulogy to you:

I just want to share a few stories and lessons that I have learnt from my amazing little daughter.
Bath time is a family affair in our household. You never get to bath alone. There are always three, four and sometimes five of us in the bath at the same time at any one time. Strange I know. Somehow if you hear bath water running you just think - hey why not have a meeting in the bath and whoever is around just jumps right in. Now on a couple of occasions little Miks had the last laugh at these group bath sessions. You see she would wait until we were all properly lathered up and then she would quietly drop a number 2 in the bath. With much shouting and screaming we would all scrum to get out of the water first and dash to the nearest shower.

In the short 16 months little Mikayla taught me more about life than I could ever imagine teaching her in my entire lifetime.

She taught me what it means to to be me.

Everywhere we went and everyone that we met was influenced by Mikayla. We would meet new people at a  braai or family gathering and the next day they would phone or send a message about Mikayla. People reading Taryns blog etc. Everybody seemed to know Mikayla, but more importantly, they were influenced by her in a deep and positive way somehow. I have seen many strong burly men reduced to tears as God has softened their hearts through Mikayla’s story.

So how could a little 4 kg girl who couldn’t talk, couldn’t sit and in worldly standards was very different, influence hundreds, maybe thousands of people all over the world? You see little Mikayla would go to sleep and she would wake up and just BE Mikayla. All day she would just BE Mikayla. And then she would go to sleep and wake up and just BE Mikayla. All day she would just BE Mikayla.

We couldn’t compare her to anybody else. She didn’t have to strive to be like anybody else.  So by just being who God had created her to be, she was able to touch the hearts of thousands of people around the world. So I have learnt to just be me - and allow God to influence people through me. I don’t have to be anybody else.

I have never been more convinced of the goodness of God and how much God loves us than I am right now. Although death is very sad and we miss our little princess terribly, death has no power over us as a family.

John 3:16 say “ For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.”

Because we have had to walk so close to death for a long period of time and I have had to explain death and heaven to my boys many times over the past 10 months, I can tell you that heaven is a wonderful place and I know that we will be reunited with our completely healed little daughter one day.

Although the past 16 months have been really tough at times, I wouldn’t change it for the world. It has been such a rich and powerful time for us as a family and as a community at large. My intimacy with God, Tat and my boys has grown so much and I have learnt things about them and myself that I would otherwise never have known.

Another lesson that little Miks taught me - and this is huge - is that I am not here for myself.

I am not here living on this earth for myself and to satisfy myself. The purpose of little Mikayla’s life and all of her struggles were not for herself, they were for all of us. We are the ones that were effected by and benefitted from her life. She added value to all of us.

To put it into context I want to share the story where Jesus feeds the 5000: John 6 vs 5 When Jesus looked up and saw a great crowd coming toward him, he said to Philip, “Where shall we buy bread for these people to eat?”
 7 Philip answered him, “It would take more than half a year’s wages to buy enough bread for each one to have a bite!”
 8 Another of his disciples, Andrew, Simon Peter’s brother, spoke up, 9 “Here is a boy with five small barley loaves and two small fish,

You see the little boy didn’t need lunch. He didn’t need to be fed. He had his lunch. There were 5000 other hungry people that benefitted from his lunch.

The fight, the courage, the joy that Mikayla  bought to each of us wasn’t for HER benefit it was for all of US. None of us is here to live for ourselves, we are all here to benefit and serve others.
So I have to ask myself “what am I doing with the five small barley loaves and two small fish that God has given me?” Whose life can I add value too? Who can I serve while I am here on earth?
It is a phenomenal question and one that little Mikayla could answer - All of us.

The video we played:



The Balloon release:

At the end of the service we released 491 balloons: 490 white and one pink balloon. One for every day of your life. It was beautiful to watch. How quickly they were gone. Some pics that friends took:

Can you see the pink one here... I watched it go, until I couldn't see it anymore....

As you fly high with the angels, Miks, and as we learn to carry on life without you here. I know that there will not be a day that goes by that I don't think of you. There are times that it will be hard: like this morning, when I moved the bed, and it made a sound that for an instant sounded like your giggle... and I sat on the bed and wept..... and there are times it will be easy, as we remember fondly of the wonderful part you played for your brief time in our family, and our community.

As I said at your service. You Changed Me. Forever Changed Me... and I will Miss You. Forever Miss You.

Lord Jesus, please take care of my baby girl, until I see her again.

Mikayla's Celebration Service

We will be holding a service to Celebrate and honour the life of our sweet baby girl.

Friday, 16 September
10h00 for 10h30
Linc Community Church
@ The Litchi Orchard
Seaforth Avenue
Foxhill (Salt Rock)

If Mikayla has impacted your life or taught you any valuable lessons, please could we ask that you share those details here under 'comments', alternatively email me taryn@tarynvanrensburg.co.za with the subjest "Mikayla". We would like to create a book with photos of her, as well as details of lives she has touched, as a remembrance of her, and a reminder of how very meaningful her short time with us was. Please remember to include your name, and whereabouts in the world you live.

We will also be doing a balloon release at around 11h30/12h00 on Friday (South African time). For those friends abroad or far away, please feel free to release a balloon in remembrance of our sweet little girl who has left us too soon.

Days 486 - 489 16 months today

Mikayla is 16 months today. Never. Never. Did we think we'd have this much time with her.

And yet there's more to celebrate today. This is really silly... I mean REALLY silly... but I feel like we've reached another milestone. Let me explain:

You see, for months now, and for reasons I cannot explain, I have had the number 486 in my head. I don't know where it comes from... it just pops in from time to time. Then, on Saturday, when I posted that post, after not having posted for a while... I looked at the numbers, and remembered.. 486. And I was worried. It's so silly... it's just a number... but after her turn on Saturday, suddenly it didn't seem so insignificant, and it just kind of lingered at the back of my mind over the proceeding days.

But now we're at day 489. That's 3 more days. It's a milestone. Not a true one. Not a significant one. But one nonetheless.

The bad news is that Mikayla's condition is not improving- well, not at any significant level. The doctor did a CRP sample, which checks her inflamation levels... and it seems that there is a decline in inflamation which suggests that the antibiotic is fighting the infection. But her lung is still consolidated. We have given her slightly stronger pain meds to keep her calm- she has been really fretful the last few days.

Tuesday was particularly bad. She was really unhappy. When I arrived her upper chest was all puffy. She was agitated, and was shouting- a horrible cats cry. To cut a long story short: the IV line that was now being run into her jugular vein in her neck had BENT. Can you imagine how sore that must've been?! They have swapped sides now, and she seems more comfortable. But the only other place to run a line, if this one comes out, will be her head... and then all her crazy hair will have to be shaved off (and it's only just growing now). But for now, it looks fine.

So since yesterday afternoon, the meds seem to be keeping her calm. And I think if she isn't spending so much time fighting and shouting, perhaps some of that energy can go to fighting the infection.

I feel so sorry for her. Her poor little body must be so sore. She has now been having physio for 11 days. On that tiny body! My heart just breaks for her. She's is so strong, and yet so fragile.

I am not sure what to feel at the moment. I am tossed between utter despair and worry, to strength and calm, to surrender. The reality is that at this stage it doesn't look good. We are doing everything we can, and yet she isn't getting better. We've moved through several antibiotics; and while they do their part, her body can't to it's part, and so she just gets worse again. How much more can her poor little body endure?

It's just not fair.

And yet, Mikayla has surprised us all before. Several times. And as long as she wants to fight, we will help her. It's really up to her.

Day 485 Hospital Update

Mikayla has been up and down today. She is sleeping alot, but this is better than being awake, because when she is awake she can get quite distressed. Although we have had a couple time when she has been awake, and calm. Yesterday we took the boys to see her. We just told them she is sick, nothing more. She was so calm when they were there. You really could see that she was pleased that they were there, even though she didn't smile. I was worried about Luke though, who was quite tearful :( He said he doesn't like her being sick. I know he fears the worst, although her cannot quite verbalise his fears. The nurses are playing with her O2 levels between 2 and 3. And again, she is up and down in this respect. She doesn't like being held or moved too much. Except for her Daddy. Mikayla just LOVES her Daddy. She is calm around him, and even let him pick her up today. I hope it's a good sign. I am feeling... I think scared. I don't want her to be in pain, or suffer. This sucks.

Days 469 - 483 Reflection and Perspective

I've been thinking alot lately about how far we've come. Not sure why. But I think perhaps it gives some perspective to the "now", when you stop and consider "then". 
Mikayla was born and we were given weeks, nay, days of possibly being with her. But the days become weeks, and the weeks months, and the months years! But it's not just time. The early days were hard. Really hard. I guess I need to remember that as Miks starts to frequent hospitals more often, something that wasn't an issue before... The perspective is that in those dark early days there were some really hard moments. The apneas. You cannot begin to know what it feels like to hold your limp, purple baby in your arms, to breathe life into her, to shake her just to get the life to come back into her eyes. Or what it feels like to hold a baby that won't stop crying... For eight hours solid, and with no means to comfort her. To hold you emaciated child wondering if she's starving to death.
I'm sorry, I am painting a bleak picture... But here's the important part: we came out the other side. And in those dark days there was also much joy. There were the obvious ones: the smile around 6 months. The age milestones. The reaching out to touch things.  But there were others: the softness of her skin. The sparkle in her eye. Watching her gain weight, and actually get chubby! Smiling at her brothers. Dancing together to our special song. All simple innocuous moments that make up a life. Those are what memories are built on... All those innocuous moments.
As I sit here next to your hospital bed, Miks, watching your O2 levels rise and fall, with the red beep every time it drops below acceptable levels. As I hear the suctioning of the machine as the physio sucks out all the mucous build up, as i hear the bubble bubble of the oxygen machine, as I watch the soft rise and fall of your chest, and wonder how it is that for 14 months you barely went to the doctor, and yet in the last two months you have been hospitiliised THREE times, and I wonder if this is how our lives are going to be? Endless hospital visits? As I sit here, I think it's important to reflect on how far we've come. How far you've come! What we have survived, what YOU have survived. 
And also to take a moment to be humbly grateful for all that we have had so far.

I have often said how hard it was when you first entered this world, because the daughter I was expecting was robbed from me. And that feeling of loss was so enormous. Like a thief in the night, all my joy, hope and happiness was taken from me. But I've been thinking about this a lot, and, well, something cannot be stolen from you that you don't actually have. In my head I had a "normal" baby girl. But I never actually had her... So how could she have been "taken from me". It doesn't change the sense of loss, but perhaps I need to take in cognizance that what I have is what I always had, but just didn't know it. And every now and again I need to step back and recognize that the wonder of that may just exceed the loss. 

Little Caleb passed away this week. It's been really moving to witness all the people that that beautiful child has touched and the impact his short 29 months have brought. How can we not be thankful for his life? And so it is, Miks, that I am thankful for yours, and thankful that today. Right now. You are here with me. And that really is a blessing. Even in the hard times.

Mikayla has been in hospital since Monday. She has pneumonia. Although not bad, they are battling to wean her off the oxygen. She is sleeping most of the time, and obviously unhappy. I am finding a lot of the nursing staff either rough with her, or completely uninterested. It upsets me immensely having to have her there all the time... I have to be home to breastfeed Jude. I was hoping she'd be home today.... But I guess we'll have to see what tomorrow brings! Just want to see my sweet girl smile again.

Days 460 - 468 Here we go again...

So, we thought we were keeping your sickness at bay. Well, actually Miks we did really well. We even managed to re-inflate that collapsed lobe. I found our that the last time you were really sick you actually had LOBAL pneumonia. Apparently worse because it is concentrated in one area.. Hence the collapsed lobe.

Anyway, so we thought we were doing well, and then Sunday came. And your temps started going up. By Monday morning, your temps were between 38 & 39C and you kept vomitting up your feeds, and you sounded awful. So I whisked you off to see the pediatrician. He told me you had bronchial pneumonia, and sent me home with an extremely strong antibiotic, but everything we put in you (through your peg), you vomitted up. How is medicine supposed to work if you can't keep it in your little body?! By Tuesday morning your temp was around 40C! I phoned the pediatrician, and she recommended hospital.

You know, one of the things I hate most about your condition is how the medical community can treat you without compassion and any sense of urgency. I arrived at the hospital, and they did nothing for 45 minutes, even though you had a ridiculous temp, and you were throwing everything up. I wonder if they would treat a "normal" child with such nonchalance?

To cut to the chase, you spent two nights in hospital, and once you were holding things down, they said I could take you home. You're just down the passage from me in your bed as I type this. 3 out of 4 feeds you have vomitted up. Your vomit is a strange yellow colour, even though we've put nothing yellow in you. You have had 3 really wet stools today- one so bad i just threw away the clothes you were wearing along with the nappy... This for a baby that is always constipated! Your eyes.... Your eyes... Well... They're different. You have an almost glazed look about you. You're really sleepy. I keep getting this feeling like you're giving up. Like you don't want to fight anymore. I dunno. It's something about your eyes. And no smiling, and you're barely making a sound (SO not like you!).

Daddy goes away overseas for 10 days. The timing couldn't be worse for you to be sick.

You need to fight, baby. You need to fight.

Days 454 - 459 - Hide and Seek Video

Finally got to upload this video of Mikayla playing hide and seek with her Dad. She loves doing this.... and gets the cheekiest of smiles when playing :)



She's still pretty chesty. Thankfully it still hasn't progressed to her lungs... and we're doing all we can to ensure that. She's quite chipper though- and also has no temperatures. So given the circumstances, is actually doing very well.

I am however praying for little Lior, and his brave mum. He has bad pneumonia again. I just wish I could give Kim a big hug more than anything else. Our little babies are so small and fragile, and to see them fighting so hard is so heart breaking.

So, on this women's day, I want to honour all those amazing women out there that I know of (and those I don't), who give so much of themselves for their precious little special babies. Who love, and cherish every moment. Who would give anything to swap places. You are simply remarkable, and I couldn't have got this far without you.

Days 436 - 453 It's raining It's pouring

Mikayla is sick again! She has bronchialitis. It is thankfully not yet in her lungs, and we are suctioning, doing physio and nebulising to try keep it out. She is not as miserable as the last time... And is not in hospital, which is a relief. Of course, just to make things interesting, Josh is also sick. Hes been vomitting and has had diarrhea. We've sent off urine samples swell, but I am hoping it's just a 48 hour bug!

Was so frustrated, because when we took Miks to the hospital on Sunday to see a doctor, the doctor put her on "Asthavent" after I had told her she has heart lesions... Apparently this particular medicine pits pressure on the heart' and the Xray of her heart om Monday shows that her heart is bigger than when she was in hospital.. Now that could be due to the infection, or the medication, or signs of pulmanory hypertension.

Sometimes living in the dark somewhat, is very frustrating... But sometimes ignorance really is bliss.

Anyway, been a pretty chaotic household... Russ & I are pretty pooped!

Miks has been really cute.... She plays this game of hide & seek with us- she particularly enjoys doing so with her Dad. I have a lovely video of it, and will try post it tomorrow. She really is a sweet little girl... And like all little girls, she just loves her daddy! And of course has him wrapped around her little finger.

Days 408 - 411 The Big Fright

It's been a pretty hectic week. When Mikayla was hospitalised on Saturday, she went in with temps over 40C, her heart rate was well over 180, and her O2 levels sitting around 70. She was very sick. They have had to constantly suction both her lungs and nasal passages to take out all the muck, and try keep it out of her lungs. Effectively she was diagnosed with bronchial pneumonia. Saturday was really horrible. It was really scary to see her so sick.

By Sunday morning there was a marked improvement though, and everyone was really happy with her response to the treatment she was receiving. She was obviously still weak, and unhappy, and still very sick, but certainly looked to getting better.

But then Monday arrived.

The first thing my husband noticed was the colour of her tongue. It was a very dark purple/ blue... almost black. Her jugular vein was more pronounced than normal. Her sats kept dropping, and her HR was high. They were concerned with her elevated HR because it was aggravating the fluid build up. She was also really very out of it. Every time I touched her (like trying to lift her), she would cry (a painful, sad cry). The pediatrician indicated that the tongue was a possible sign of possible cardiac failure, as was the enlarged jugular, and was very unhappy. Mikayla's upper right lobe of her right lung had also collapsed. The long and short of it, was that she felt Mikayla may not be able to fight this, and there was a chance we would have to start saying our goodbyes.

It was horrible. I think I went into mild shock, and perhaps panic too. I wasn't prepared for this day yet! It wasn't supposed to happen like this. I needed more time. I kept thinking: What if this is it? What if I don't ever see her smile again? I didn't take the time to really enjoy the last smile I DID see... to cherish it... to remember the moment! I needed that moment... and now it may be gone, and I may never get another chance! I just couldn't bear it! I mean, how do you EVER prepare yourself for that moment?

And then Tuesday arrived.

And suddenly she seemed MUCH better. Granted, the lung was still collapsed, and she was still on O2; but she started maintaining her sats around 90-100 and her HR was at normal levels around 130-140. Her colouring in her face was much better, and her tongue colour had marginally improved, and she was more alert and more comfortable. A complete 360! Today was much the same, and infact, she is even better. Granted, she is still on the O2, and her lung is still collapsed, and she is still fighting the pneumonia... but she looks like SHE is now fighting too, rather than just letting the drugs to the work. She had her hands in her mouth today, and was reaching out for her toys (the best part of this is that her left hand, which is the hand she tends to favour for reaching out, is "unusable" because it is bandaged up as that's where they have the port for the intravenous antibiotics and whatnot.. so she is using her RIGHT hand to reach out... her PT would be chuffed!). She is starting to look like our little Miks again. Not quite smiling yet- but is far more responsive, and clearly more comfortable.

It's been such a roller coaster week. We're not completely out the woods yet. Mikayla still has to be weened off the O2, and keep her levels up herself. Her tongue is also not quite it's normal colour. I'd like to up her feeds a bit- because she is currently on 50ml every 2 hours (not sustainable at home!) (she was on 125ml every 4 hours, with solids in between). And obviously the lung has to repair itself. But we have certainly turned the corner (and a big one at that!).

At the end of the day, this is Mikayla's story- and she obviously hasn't quite finished telling it. I am still convinced some days that people think I make these things up!

My little princess warrior.... you're certainly keeping things interesting!

Day 407 Hospitalisation

Poor little girl is very sick

Last night wasn't good. Officially, it was a "good" night, in that she only woke once. But during the course of last night, she changed... she was no longer crying, but started, actually whimpering. We couldn't get her to keep much food down... even when we used the peg. She was so exhausted, and yet she wouldn't/ couldn't sleep.

I went to her this morning.. she was covered in phlegm- it was even in her hair! I bathed her, and gave her half a feed in her peg, but she vomited it all up. We tried contacting the doctors- my feeling was hospital, but I wanted to check what the doctor said. Anyway, I couldn't get hold of anyone... so I took her temperature, and it was 39.2C!!! So Russ whisked her off to the hospital this morning. Russ has been great- and has spent the whole day at the hospital- helping with feeds, helping hold her down for medication etc.

Effectively they are treating her for bronchial pneumonia. She is on 2 antibiotics and something for the fever (it was over 40C when she arrived in the hospital!!). They are suctioning her nose and lungs, as well as physio. They are also nebulising her. They have also had to give her medication for her heart, because even with them having brought her temps down, and putting her on oxygen for her sats, her heart is still beating wildly... the problem with this is that with her heart lesions, the wild heart is actually causing more fluid build up on her lungs, which is what they have to get under control.

She goes from being very distressed, to being quiet and lethargic. She is very tired, but is battling to sleep, because even on the oxygen her breathing still isn't great, and her oxygen level was dropping well below 85. Russ says she seems confused...

I haven't been able to be there, because I can't take Jude, and I obviously have to be around to feed him. The second time I went in to see her, this afternoon... I said hello to her, and her head WHIPPED around to see me... and while I didn't get a smile, she seemed to be trying to talk to me.

I am scared. Mainly because she has been so strong... and has never had to be hospitalized (except for the op for her peg)... so her rapid decline from a snotty nose to bronchial pneumonia - it was less than 48 hours from zero to hero - has been quite a shock. And because I can't be there, I feel like a bad mother. She is probably scared, and in a very unfamiliar surrounding, and of course I just hate seeing her suffer. And for her to go from a loud moaning, to a whimpering, is really an indication of how terrible she feels.

The pediatrician is doing everything possible- and covering all bases. And the nurses are of course lovely. It's going to be a tough night- cos I can't be with her. I love her, and I am trying to be positive. But it's hard. I am also trying to trust that this is all in God's hands... but really am feeling a bit like I have "ostrich syndrome".... (or would like it, in any event)

Mikayla has always been such a fighter... despite us. We've obviously treated her for stuff as and when she's needed it- but invariably she rarely ever needs anything, and has certainly never needed hospitalization. But I have noticed that every time she gets a little more sick than the last time, and takes a little longer to get better. But this is full blown. I feel so out of my depth. But she's in the right place.

I guess I can only trust that God's plan will prevail, and that he'll give us all the strength and courage to deal with what lies ahead... whether that's Mikayla, or us, or both.

I love you baby girl.

Days 405 - 406 Sick little girl

To say the last couple of days have been difficult is the understatement of the year! Mikayla has been very unhappy. Yesterday we took her to the pediatrician after having a pretty hectic night... And he basically just said it was congestion,- it was viral, and we would have to wait it out. Well, last night she was horrific. Waking often, not wanting to feed, very bunged up, etc. So we took her to the doctor today (both pediatricians, plus both docs had I previously seen were ALL not around!! How's that for luck?)

Anyway, he basically said that it's an infection, and is in her right lung. She is now on a medley of medicine, including antibiotics. My worry is that she is so clogged up.. She won't eat, and is vomitting up feeds we give her in her peg. She cried for 8 1/2 hours solid today. She won't sleep, even though her poor little body is completely exhausted from all the coughing, sneezing and wheezing!

Not sure what night we'll have.... All I can say is that I HATE seeing her suffer like this. It is so very very wrong!

Days 402 - 404

Mikayla is finally growing out of some of her clothes. At 13 months, she is now out of newborn sizes, and is wearing 1-3 months... in the slightly bigger sizes of that age category. So I've started collecting all her old clothes and putting them aside.

But I can't throw or give them away. I have absolutely no need for them, obviously. Jude will look silly in pink (and besides, he's ALREADY too big), and we're certainly not going to have any more children... but... I can't do it. It's like I'll be closing a door on my life... FOREVER. Since as far back as I can remember, I have wanted a daughter. Pigtails. Ponies. Fairies. Pink, pink and more pink. And along with that desire for a daughter was all the things we'd do together. She'd tell me about her boyfriends (Ja, as if!! ... but I can dream, can't I?), she'd emulate me when she was 7 (like I did my mum), I'd paint her toe nails, and she mine (weird, I know.. but it's a girl thing!)... we'd do all those girlie things... and the biggest of course would be that I would watch her Dad, both her and my hero, walk her down the aisle. But the day I throw out those clothes, I am officially closing that chapter. Look, I know... it's already closed. But I just cannot bring myself to officiate it yet. I. Just. Can't. Do. It.

Mikayla has been doing this very strange thing. She has found how to grab her pinky of her one hand with the other. But she grabs it, but then twists and squeezes it.. and she seems to do it to get to sleep. The problem is that she HURTS herself...and ends in tears. So we put a sock on that hand to prevent her from hurting herself. BUT now she has started hurting her OTHER hand... she presses her hand up against her face, so that she pushes her thumb and forefinger against her face... so she hurts her hand and her face... so now she has a sock on her other hand. She looks quite funny with two socks on her hands... and of course, she chews like mad on them, making them soggy... giving "put a sock in it" a whole new meaning :)

We have started Physical Therapy with Mikayla. She loves the therapist, and really does try very hard. At the moment, out first goal is to try give her more head control, and loosen up her hamstrings and lower back, in preparation for sitting. So watch this space.. in the therapists words "Mikayla might just surprise us all"!

Days 389 - 401 Chaos Reigns

Well, the last couple of weeks have been... erm... interesting.

You have continued to be on and off... still sweating at strange times... happy the one minute, really unhappy and snotty the next. About a week ago, we whisked you off to the docs, and he picked up that you had a chest infection. We put you on straight penicillin... it seemed to work really quickly, which was great. And you seem ok- but, as I said, from time to time you still get snotty and sweaty. The unpredictability of it does make it very hard to keep a tabs on- so we can think all is well, and then suddenly at 4pm you're inconsolable. The other night we had one of your 3 hours of crying stint... in between that you vomited up all your milk, and had a snotty nose. And then the next day you were bright as rain!

It's been pretty chaotic. Dad has been away most of the week... and taking care of all 4 of you has been quite trying on me. You're mostly good as gold.. although I have had some interesting nights of you being relally miserable... and dealing with you crying for 3 hours, and still being able to breastfeed your brother, when I am on my own, has been, well challenging!!

The good news is that you're still growing! You love your solids... I just think your tummy isn't big enough to take more, although I think you'd love to have much more :). Weighed you this morning... 5.12kg!

This morning, your brother decided he wanted you to sit with him. So he picked you up, and put you on his lap... he really does adore you, and is so sweet with you. And you adore him straight back. So proud of him :) Here you are watching TV together... look how he holds your hands... and you're watching the TV... so sweet....

Me and my big (but not biggest) brother watching TV together

Days 375 - 385 Getting into the swing of things

Gosh! Time really flies when there's another baby in the house! How has it been 10 days already!?

Jude is settling in well, Miks.... you're still somewhat fascinated when we place him near you, otherwise pretty uninterested, I suppose. His noise doesn't seem to bother you, nor does your noise seem to bother him. So it's working well having you share a room- perhaps you both know that you have company, and quite enjoy it?

You haven't been well. Last Tuesday you started sweating again. You weren't eating well. Still the norm though: in that no temperatures or anything! So, as I said in my last post, we had you on antibiotics. In the past you have always responded quite well to antibiotics, in that all your "symptoms" have normally subsided within 24 hours or so. Not this time. You're still on and off with the sweating- one day you're quite content, and we think you're better, and the next you're sweating, not eating, and all round unhappy. The worst part is that the last few nights you have started waking during the night- and getting up for two babies is NOT fun (I have developed a serious new found admiration for parents of twins. I always used to say that having twins must rock... particularly for someone like me, cos I just hate being pregnant... well, I will say that I unequivocally remove all previous comments stating that having twins is the way to go... it's SERIOUSLY hard work! Rock on one baby at a time!!).

So we're a pretty tired household. Your poor Dad... I just sometimes cannot get out of bed, and so he'll sort you out with a feed... but then he's tired, and he has a business to run! Your brother has been completely angelic. Newborns! Easy peasy (and going to change... don't worry, I am under no illusions!).

Last night we ended up giving you Panado to get you to sleep- because you were just so unhappy. But then a few hours later you were awake again, and we had exhausted all options- so I really couldn't think how to get you down again... so I gave you teething gel... and it worked! SO maybe you're teething? (It must be said: I can neither see nor feel any teeth... but at this stage we're clutching at straws! And it might not even have been the gel that "worked"... goodness... who knows?!)


The one thing that keeps striking me, now watching Jude, and how a newborn, and having a new baby in the house is: and it's really dawning on me how difficult things were with you. Particularly in the beginning. And we didn't have any help. It actually makes me sad in a way: we ploughed through those early days- just your Dad and I. I spent all my time working... and maybe that distraction was good in a way- but I am sad at the realization that it was, in some ways, quite a lonely journey right in the beginning. And I dedicated my time to other people and things. In part to try and lessen the pain... but with the advantage of hindsight- perhaps it would have been nice to have had someone ease some of that burden for us (gosh, that sounds so selfish, doesn't it?).

I guess it's a silly thing really to wish for- I mean, the reality is that by starting my blog, which was only ever a platform for me to offload some of my pain- a diary or personal journal, really- that in time I found a wonderful network of people who understood my pain, and this unusual, and often frustrating journey we were on.. people who reached out to me- sometimes a stranger- and made me feel loved, and not alone. For a season, my blog and all the wonderful friends it gave me, became my lifeline. To all of you: there are not enough thank you's.

It all sounds so selfish, but I guess the thing that has stood out, is the discrepancy of bringing you home, and bringing Jude home. How we responded to each. How others responded to each. And this is going to sounds really trite, but it's one of the reasons that I am grateful that you have done better than the odds predict- because I can now enjoy you- where I think in your early days, I just wanted to run away from it all some days. So, although hard at the moment, because I spend so much time with Jude feeding etc, I do get to spend time with you, my sweet little girl.

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 349 - 350 How Do I love Thee? Let Me Count the Ways

How Do I Love thee? Let me count the ways

How do I love thee?  Let me count the ways.
I love thee to the depth and breadth and height
My soul can reach, when feeling out of sight
For the ends of Being and ideal Grace.
I love thee to the level of everyday’s
Most quiet need, by sun and candlelight.
I love thee freely, as men strive for Right;
I love thee purely, as they turn from Praise.
I love thee with the passion put to use
In my old griefs, and with my childhood’s faith.
I love thee with a love I seemed to lose
With my lost saints, I love thee with the breath, Smiles, tears, of all my life!
and, if God choose, I shall but love thee better after death.

-Elizabeth Barrett Browning

I read an article written on the T18 FB page. A little girl with T18 who died when she was 14 months old. I can't tell you how it hurts. You're nearly there! It just hits home when I read things like that. I think sometimes I live in dream world... it seems like you'll just be around forever. Like all of us. And then I read the reality of your condition. And it hurts me.

I took you for your one year check up today. Went to another pediatrician, as mine was away. He said you were the oldest T18 baby he had ever seen, and he was surprised at how "healthy" you were. And he is not wet behind the ears either... so that was quite a thing to hear!

Although mostly I think we live in blissful ignorance of your diagnosis and prognosis.... sometimes it consumes me with what "tomorrow" holds. What will it be like? What will happen? How? When? What? (Depressing, I know). The pediatrician said something (and meant it in the nicest way): "when we're expecting things to happen, they won't... but when we least expect things, this is when they happen"... kind of a murphy's law theory, I suppose!!

And I was sitting thinking about you, and Elizabeth Barrett Browning's sonnet came to mind... and yet, how can I count the ways I love you? With every hard moment, with every ache and pain that we have dealt with over the last year, there is this deep deep love that I have for you. I love you, not only DESPITE your disability, but sometimes even BECAUSE of it.

My little soldier girl. How do I love you... let me count the ways....

Day 312 Chapter hopping

Been going through Miks' clothes, and putting aside all the clothes that she is now too big for; and I am feeling immensely sad about it. I should be celebrating that she is finally, at 10 months old, getting too big for her newborn (!!) clothing (although, she is still wearing 0-3 months sizes), but I feel quite nostalgic and sad about it.

Perhaps it's knowing that we have passed some of her life by... that I will never get those days back. The memories that these clothes bring- some sad, some happy. I know, I know, it's all a bit silly when she is still very much present in our lives... but, I dunno, it's closing a chapter I guess. Am I really ready to let go? Are you ever ready to let go? Maybe it's also just because another little T18 angel got her wings... little Emalee...8 months old. I read through the stories of these mums who have had to say goodbye, and it hurts so very much..... I'm just saying goodbye to clothes... how will I cope if I have to say goodbye to Mikayla!? *sigh*

I phoned the pediatrician about the "episodes" shes been having. She says it's difficult to ascertain what is causing them without actually seeing one of these episodes; and she has suggested we keep an eye on it, and if she has one again, and I am able to, to try video it, so that she can actually see it. Obviously our main concern is that it is a brain seizure, as having these can cause irreparable damage to the brain, which clearly we don't want.

Had a bit of a mare last night with Miks: cos we fed her around 8pm in her tube, but because we'd kept her bedroom light off, and just relied on the passage light for light, I think I didn't notice some pretty big air bubbles going in with the formula. So she proceeded to throw up half the bottle all over herself.... but obviously it was just formula sitting on top of the air- so it was just straight milk. I always get such a fright though! Such a wimp, I know! Thankfully she was on the leather couch at the time... Ah, the joys of leather.... sorry all you animal activists out there :( but there is nothing quite like leather... material is lovely, but try getting baby vomit out of that... not for the fainthearted! But good old leather just requires a good old wipe.

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!

Days 206-240 Getting to know Miks better

So the first few weeks of December were just chaotic, trying to wrap things up before taking leave. I basically hadn't taken leave pretty much the entire year, and since I had to take all my leave by the end of the year, decided to take a full months leave. Somewhat disappointing really, as it's not like we've jet-set off to some exotic location... but rather we spent Christmas with my folks, and have otherwise just been at home. But I have loved the MUCH needed break. To clear my head. And settle my heart a bit.

As mentioned above, we spent Christmas down in East London (that's Oos Londen, in die Oos Kaap, and NOT the East of London, Britain, incase anyone was wondering.. ha ha). Well, the morning we left, Mikayla was an absolute disaster. She cried the whole morning, the whole way to the airport; and the ENTIRE flight to ELS. I felt like climbing on the plane and flying straight back home... I just felt it was going to be the worst holiday ever. Miks is much happier in her own environment. She hates to travel, and I would go so far as to say that i think she perhaps doesn't like the MOTION of travelling in the car. Even a large dose of Calpol didn't help ease her, or make her sleep. So the first night she was very unhappy as well. We then travelled to see my grandparents, (Gran and Step-Grandfather) who were celebrating their 50th wedding anniversary... but something during that tiime started to change... and well, to cut a long story short, it turns out Mikayla was an absolute ANGEL during the 11 days we were away. Infact, the only really horrible days were day 1 and day 11 (er... travelling days!). She was smiley, happy... even laughing occassionally. She slept well at night, fed well, and was just an absolute pleasure.

Mum and Dad got a lady to help out so that if we wanted to go to the beach or whatever, we could leave Mikayla at home with this lady (since Miks REALLY battles outside.. she just cannot tolerate the good old South African glorious sunshine glare).. and it was on these occasions that I realised something... now hold your horses... this is big.... Mikayla really likes being around my husband and I. I mean... she REALLY enjoys our company, and attention. She would get very unhappy on the rare times we left her alone. It's almost like she has separation anxiety when we're not constantly around her.

I have to say: she was just adorable when we were away. Every now and then I would happen to be standing at her bed when she woke up, and she'd open her eyes, and the first thing she'd obviously see, was me, and she'd give me the BIGGEST grin EVER. It's a really wonderful feeling to know that she knows us. And that she really does love us. I think for a while now I have reserved something of myself. It's difficult to put your heart and soul into something or someone that you know you are going to lose sooner rather than later...and I think during this holiday I have learnt to FEEL my love for Mikayla a little more. Both a good and bad thing, in some ways.

This is a video of my husband throwing Mikayla back... she just loves it (well, she smiles like mad every time... little adrenalin junkie!)




Then below is a video of Mikayla when we had got back home, sitting outside (which is something she VERY RARELY does, as she HATES it)... but it had been a balmy summer afternoon, and we were having a braai in the garden just before sunset, so the glare wasn't too bad... she was so chilled.... sucking away on her fingers... how she gets her middle two fingers into her mouth, I just dunno... but those are her fingers of preference. Otherwise it's the WHOLE of her left hand in her mouth.



The hand thing has really made a difference to our lives... she definately self soothes a bit now. And when she gets really tired, she actually sucks her right hand, and covers her eyes with her left hand. Like this:


Then lastly, I had to post these two videos.... Mikayla very rarely laughs... and she has the cutest little laugh when she does... like a hiccup almost... but you'll have to take my word for it: it IS a laugh. She seems to find the funniest things funny. The first video, she was laughing at her Daddy when he was kissing her... it was a real spontaneous moment, that I managed to capture the tail end of... The second was of her laughing at her Daddy's beard... he rubs her hand down his chin over his stubble. Her one hand, in particular, is very sensitive... and this often does make her laugh.





The other night (new years eve), I was holding her chatting to her. I was holding her upright, facing me (she loves to try holding her head up, and manages to do it for a little longer now), and for some reason she just thought I was funny, and laughed at me 3 or 4 times. Good to know someone finds me funny... maybe I should try telling her jokes... no one else laughs at my jokes (I am REALLY BAD at telling jokes).... but maybe Miks will? There's hope for me yet....

It's those special sweet moments that make me love her so much!

We are trying again with the cereal... I gave her cereal with apple and cranberries tonight (apparently, according to the box, it's also good for tummy etc)... I admit, I am nervous... but we're giving it a go.... all prayers appreciated :)

And my head? Ooh... lots going on in there.... too much to share on this entry. But I tell you one thing: I am GLAD 2010 is OVER. It has been a HORRIBLE year for our family. First, the daughter I had prayed so hard for, and had anticipated, and been so excited to welcome into the world, arrived not as I had expected... and with all the blessings that she is, it was still an enormous loss. Then one of my aunts (one of my mum's 3 sisters) passed away after her 3 or more year battle with cancer; then my mother in law passed away, and then just before Christmas, ANOTHER of my mum's sister's passed away very suddenly after having a HUGE heart attack.... she wasn't even 60 yet! Gosh, I just wonder at what point happy things will start happening in our lives? I mean, don't get me wrong, I know that we are blessed in MANY ways... but I just, ah, I dunno... I long to feel inexplicable joy... I am not sure I know what it feels like anymore to feel absolutely blessed, or absolutely happy? Then again, do even the REALLY blessed (nothing-ever-goes-wrong-in-their-lives-kind-of-people) even know how very blessed they are?

Maybe the blessings aren't the big things, but rather the small things that often go unnoticed?

My 2011 new years resolution? I don't have one... I think it's all a load of rubbish... but I am certainly hopeful of good things to come... maybe, with a little bit of luck, even to me!? *Sigh*