Days 351 - 355

I was reading back on little Brianna's Blog, at her final weeks, at the posts made by her mother- all so beautifully and courageously written.

I am not sure why I do it: read through other peoples tragedies, I mean. Surely on a sensible level it would be better not to submerse myself in their sadness, both past and present? Sometimes my head tells me that I am torturing myself, because it does make me so very sad... because it's so REAL! But maybe that's the point. Maybe I need to remind myself from time to time that Mikayla may be fine. But she's also not fine. And while I think I have the strength not to wallow in her "lack of fine-ness", I need sometimes to know that there may be a time in the future when her condition will reel it's head, and ultimately take her life. And we'll still be here... having to pick up the pieces. Maybe its also so that I can see that other people have been through such tragedy, and yet, have survived!

I think I am a better person because of Mikayla. Maybe not on the outside, but certainly on the inside. She has made me more understanding. Perhaps more compassionate. And stronger. It frustrates me sometimes- because it's been a year, and there is SO much positive in that... but everyone has kind of gone on with their lives. But ours hasn't changed. Everyday we are still dealing with the ins and outs of her tragic disorder. Her T18 hasn't gone away. And while I celebrate her little milestones, and take the time everyday to love her... part of it is that I also carry this grief with me- knowing that I won't have the time with her that other mothers will get with their daughters. That I won't get to do the mother-daughter things that other mothers get to do with their daughters- and take for granted. And it hurts just as much now, as it did when she was born... I am just better at channeling that sadness.

And sometimes I can't help but wonder about tomorrow. Though I wish I could forget.

Miks has been quite well and happy the last week. This afternoon she wasn't great though. Vomitted quite a lot on her nanny (I was out)... and has a snotty nose again. This frustrates her, and she will shout a lot to make it known that she doesn't feel well. Also, the minute her eyes start getting clogged up, that's a good sign that she is getting grotty. Anyway, we're managing it, and I have no doubt she'll be fine :) Little toughie, my Mikayla.

Read this on Brianna's site: hope I am forgiven for re-posting it.... I don't feel like much of a saint. More often I feel like a failure. But I think my pregnancy hormones are largely to blame for my "Mona Lisa" attitude at the moment. Forgive me. I'll get over it... anyway, this is what I read:

THESE MOMS SHARE SPECIAL GIFTS

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecelia. Rudledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious, "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy."

"But, Lord, I don't think that she even believes in you."

God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods, "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says Momma for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised in midair.

God smiles, "A mirror will suffice."

I will say this as well: a common denominator I have noticed, amongst all these courageous mothers, is the amazing men at their sides. They are strong, loving husbands/ fathers, who love their special children unconditionally. And certainly in my case has been my rock when I felt I couldn't go on. I really honour and salute these very special men.

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....

Days 345 - 348 On the mend and around the bend again

You know, you really make me look like a wimp, Miss Mikayla. After all the drama on Thursday night, and Friday morning, you were bright as rain by Friday afternoon. Gosh I wish I had your "bounce-back" capabilities. I am finally feeling better- but it took me nearly 7 days, whereas it took you less than one!! Little rat :)

So the antibiotics have worked their magic with you. You're not snotty anymore, and thankfully haven't given us anymore scares this week. The BEST part has been that for the last 8 nights you have slept through! Blissful! (except for the fact that, due to my ENORMOUS belly, and all the aches and pains that come with final stages of pregnancy, I cannot actually sleep at night!!). I really thought we had turned a corner with your sleeping, and that you may just start sleeping through.. but alas, you woke last night during the night. Given, it was only once during the night... but still... I feel decidedly robbed! Please please please, my girl, will you keep sleeping through. I'd really love to only have to wake for one baby when this sibling of yours arrives!!

Otherwise you've been alright this week... you're quite dopey, and are sleeping quite alot during the day, but I would imagine it's simply post-sickness-recovery. You're certainly not UNHAPPY. And that makes for two very happy parents.

I am planning your first birthday party... we'll have it ON your birthday.. just close friends and whatnot... but I am just amazed that this day has come. Never did I think I would plan you a birthday party.... I even have to think of a present to buy you! It's both exciting and bewildering!

I am concerned about your oldest brother. He keeps praying for this baby to grow, and to get strong... I really feel like perhaps he is worried about me going into hospital... well, he IS, because he got quite tearful about it the other night- but he says it's cos he'll miss me when I am in hospital... I think he can remember all the sadness of a year ago, and the stress and worry, and he doesn't want a repeat of that, although he doesn't really understand why he is feeling so sad, or how to verbalize it. It's such a big burden for such a little boy to carry!

I so long for this to be a happy occasion: when this baby is delivered on the 11th of May. For anyone out there who is reading this: please can I ask that on the 11th of May you pray for us? I often wonder if I had perhaps prayed more for you, Miks, CORPORATELY, maybe you would have been born without the extra chromosome? I just want this baby covered in prayer- for the 11th of May to be a happy day for our family, especially for my boys... filled with HOPE and happiness! Please pray for us. That's all I ask. Because I know there is power in prayer... and maybe if God won't answer me, he'll answer someone a little more important than me..... so 11th of May... please pray!

Days 343 - 344 Who do I cling to?

The last two days have not been fun!!

First off, I am ill as anything. As of Tuesday, I have been on antibiotics, which don't seem to be working. I am coughing and spluttering, my lungs hurt, my head hurts, I am all husky (and NOT in a sexy way)....

And Miks, you are always so resilient. While the rest of us wither away with sickness, you seem to hardly ever pick up a thing- and if you do, you just sail through it mostly. Well, it seems not this time... after all my cocky talk on the matter!

I had a meeting in town yesterday.... when I arrived home, your nanny was most distressed saying that you hadn't been breathing well, and you have vomited twice- a horrible sticky vomit! And if she is distressed (she NEVER is), then that sends me reeling! So I tried to call the pediatrician, who wasn't available... I then phoned our GP, and had a complete meltdown on the phone... your breathing was definitely strange... almost like a hiccup? You were sweating like mad (although no "official" temperature).

So I raced you off to the doctor. While waiting, you just kept shouting. I didn't want to sit in the waiting room, cos everyone was staring at me. And then people ask if they can hold you- or ask how old you are. When I tell them you're a year old, they give you this weird look... and I don't want to get in a dialogue about your disorder, when all I want to do is burst into tears. So I sat outside on the steps, crying while you shouted, feeling like just crawling into a hole somewhere... scared, and alone.

Anyway, doc did all the standard checks- but the problem is that your breath is labored ANYWAY, and your heart and chest make funny sounds ANYWAY. But I love my GP. He knows when I tell him you're not right, that YOU'RE NOT RIGHT. I know your little quirks and noises, and these were not your-normal. So you're on an antibiotic.

Anyway, last night, your Dad went to a friends birthday party, and I was home with you and the boys. You kept doing this shouting thing. And I figured something out: you haven't quite figured out how to breath through your mouth. And because you're all clogged up, and can't breath through your nose, you know how to get breath in and out your mouth by "talking" (yes, the tongue thing)... and I think that's what your shouting is you doing: breathing!

So it wasn't too fun an evening, cos you wouldn't sleep, and you wouldn't drink your bottle. Around 9pm, I tried to give you a little more bottle. You had a few sips, and then you coughed... but you kept coughing, and your couldn't catch a breath in, and then you stopped breathing!!! You went bright purple. You had stuff coming out your mouth and nose. It was horrible. I was so scared. I am crying just thinking about it. I didn't know what to do. I was patting you, and hugging you, and rubbing you, but you just didn't get a breath in. I thought "oh my gosh, this is it!"... I couldn't believe it. After phoning your Dad, and running around the house like a mad woman, you actually came around... but you were still very unhappy.

We eventually got you calm enough that you fell asleep (the irony is that when you're calm, you breath better- but it's getting you there that is so difficult... and I had even given you Panado, and that didn't work). And then you slept like an angel all night!

But this morning you had one of those seizure things: you were fast asleep, and I was sitting looking at you, and I put my hand on your chest (It's weird, I do this alot, just to feel that little heart beating... reminding me of your LIFE)... and I thought "Gosh, your heart is beating REALLY fast"... and I mean, REALLY fast!! And then you started the whine, and then did the stretch/ stiff body. I just burst into tears. I just don't have the capacity to deal with these things at the moment. I am sore, uncomfortable, sick... and my little baby girl is too, and I feel like I am not doing anything to help you! But what do I do? It lasted a good 5 minutes.... and eventually we gave you a bottle of water- and I think the suckling calmed you down. You're somewhat dopey today... quite quiet. You're also a bit hot. We're giving you all we can for it. What more do I do? Do I trust God? Has He let me down before? He is so goodl... but does He care about us? Did He care when I begged Him for my whole pregnancy with you to give me a healthy child (even when I was told you were healthy)? Was it my fault you're not "healthy" because I didn't believe enough?

I am scared, Mikayla. I am not strong enough for this. I'm scared. Mostly I just want to cry all the time. I am so very very scared. I need to get better... all this sickness, along with final stage pregnancy hormones, are not good for me!! I am feeling deflated, and worried, and... *sigh*.... I just don't know how to love you less so that if something happens it won't hurt so much. Because it hurts already, and you're still very much here!

Days 337 - 342 Memories

I love this time of year Miks. I think cos it's my birthday month, the smell in the air, and the feel all around me is positive, and happy. Waking up in the mornings, and the smell in the air is my best... I just feels so good. But the other night, I was having supper, and something about the smell in the air brought all the emotions of a year ago back to me, in a rushing tide I simply cannot describe.... it was so strong, I couldn't actually finish my supper.

I remember that week so clearly. I remember sitting at the dining room table while you were still in NICU, simply pushing my food around my plate- having neither the energy or the desire to eat. I remember that emptiness that I felt... and that feeling of my heart literally shattering into a million pieces, a million times a day. That feeling of not being able to function.... just wanting to shut off. Forever. I have to say, it was quite a frightening feeling to feel those feelings again, even though it was in a way brief... and simply a memory. And then I thought about this baby arriving in 4 weeks time.... *sigh*... and even though I am confident the baby is fine... well, a part of me is so very scared! I simply couldn't go through that kind of shock and pain twice. It would quite literally kill me!

And I have been quite sick... a respiratory infection.. so the other night your oldest brother was saying his prayers, which went something like this: "dear Lord, thank you for the whole world and all the beautiful plants and flowers... dear Lord, please make mommy better, and please don't let the baby get infected... and Lord please let Mikayla get more and more better every day... and Lord, please don't let her die".... oh my gosh... Miks, what do I say to that? How do I prepare the boys? But also let them enjoy things as they are NOW? Don't get me wrong: we do not dwell on your "sickness" at all with the boys... but in the early days we had to tell them the truth, and the potential reality of your disorder- I simply won't lie to them... and Luke... well, he is such an astute, wise old soul... with the heart of a lion. They both love you so much.... I am so scared for them! I try to always live for today... but sometimes... well, I am just scared.

Last night was a disaster. I seem to get worse by the hour... so I went to the doctor, and he put me on antibiotics, so that it doesn't go to bronchitis. But from about 3pm yesterday, you got a blocked nose. It's so frustrating, cos is doesn't look bad... but you obviously can't breath properly, so you get really upset... and the more upset you get, the more snotty you get. The "snotilator" doesn't even help- it stresses you out so much, that you end up producing more snot than we can take out! You basically cried for 7 solid hours. By 9pm last night, I was beside myself... your Dad and I had been passing you around like a parcel... and trying everything under the sun to calm you... but I am feeling really sick, and I just desperately need to rest (impossible in this house!)... so Daddy took you for the last hour or so. He gave you a good dose of Panado, and that seemed to sort you out enough to calm you, and you then fell asleep. You were obviously fighting something, cos you were sweating like mad... but no temps. And then you slept through the night, which was a real treat, cos I really needed a full nights sleep... as did you.

You're somewhat quieter today... not as chatty, and still somewhat sweaty... but your blocked nose seems to have improved.... but I do get scared... there is always this little lingering voice in the background wondering what if?

I have booked your 1 year check up. 1 year!!!!! Who ever would have thought!?

Days 335-336 Just can't get enough

I simply cannot get enough of this tongue! It's an obsession for me... I am desperate for her to stick her tongue out and talk to me... when she doesn't, I start getting withdrawal symptoms, and am all bummed... and when she does, I am practically rolling on the floor with laughter! Seriously... how much cuter can it be?!?!

Check this out from last night:



She's so funny as well, because she is definately communicating with it. Like last night... she was quite grumpy in the evening... not feeding well, had a grotty nose... I think maybe she has a little cold (nothing serious)... but after carrying her around for most of the evening, I was tired and desperate to go to sleep (I had had no sleep the night before- had laid awake for 3-4 hours with too many thoughts going through my head...).... so I put her in her bed. Well, she cried/ moaned for a bit... and then there was this kind of pause... and then she stuck her tongue out, and she SHOUTED at us... and I mean SHOUTED! She frowns and everything.... had Russ and I in hysterics! We even have the boys begging her to stick her tongue out. Oh my, we are seriously pushed for entertainment!!

I have realised that I am a terrible mother.... you see, first of all, I haven't taken her back to the surgeon for her post op check up (was supposed to be done 4 weeks after the op, and it's been 8 weeks)... and then her PEG was acting up yesterday, and I phoned the rep and she pointed out that we're supposed to flush it out daily, which I haven't been doing! Quite honestly, we hardly use the PEG- we just haven't needed to.. although, I am thinking that perhaps I should start pushing her to have even just 20ml extra a feed. She is still not sleeping through- and I seriously don't know how we're going to cope once this new baby arrives... and I have only 5 weeks to go!!! But she is eating all these solids, over and above the bottles, and we use the PEG if she doesn't eat her bottle, then we just put it in the PEG- but we haven't had a need?! *Sigh* Not sure what I should do. Just scared to push it and then hurt her... especially because she's been badly constipated recently (completely my fault- didn't give her enough water to drink while on holiday... see what I mean? BAD mother!).

On a happy note... I am planning my little girls FIRST BIRTHDAY PARTY!! (It's a Minnie Mickey party... get it?!). I am astounded!! Never ever ever in a million years did I think we'd get this far. The picture that was painted when she was born was so poor, and the prognosis so bad, that we spent the better half of this first year of her life expecting the end. Now... well, now we just don't know :) (And realistically, we never did... NONE of us do... about ANYTHING or ANYONE!).

Mikayla, you are a cute, you're a hoot and we love you... Mwah

Days 320-334 Miks got her tongue

Gosh! Once again, time has just flown by!

Had a hectic week after the last post, as we got ready to go on holiday, and then we were away last week. It is only the second time we have gone away since Miks was born (and the first proper family holiday where we went somewhere other than family in over a year!!).... and Mikayla just seems to go in leaps and bounds when we're with her. She so enjoys spending time with us- and seems to save something special for us each time.

This time that special thing was that she found her tongue! And man does she love it. She spend 5 days with it hanging out, and TALKING TALKING TALKING with it.. she is so expressive, and responsive with it. Even often sticking it out when I ask her to!! It is SERIOUSLY cute. Everyday I just love her more and more... which, if I am to be honest, really scares me sometimes... because each day of knowing her and loving her more, is one more notch in the potential pain I will feel if I have to let her go! Anyway... I try not to think about it. We live for today. Anything other than that is just not worth dwelling on... counter-intuitive really!

Here's the first video we took of her "finding her tongue"... I thought it was the food... that maybe she didn't like the food... but from that moment on, she just ALWAYS had her tongue out. She often seems to stick it out almost as if to get a reaction from us... to MAKE us laugh! The second clip is of her chatting and laughing (with her tongue aswell)... while Russ was tickling her. It's one of my absolute favourite videos... it is just so HER!






Please keep Mikayla's little friend, Lior in your prayers, who has really been battling with all sorts since having a G-tube inserted. His story can be found here: http://www.pampers.co.za/en_ZA/viewBlog/blogId/15002. This little fella's birthday is soon... and I am praying for his recovery, so he can have a much deserved party :)