A trisomy is the presence, within a persons cells of an extra chromosome instead of the standard two strands (hence the "tri" for three!). The most common Trisomy is Trisomy 21 (Downs Syndrome), followed by Trisomy 18 (Edwards Syndrome), and then Trisomy 13 (Patau Syndrome).
These dear babies are often given little or no hope of a life or future, or chance of survival, particularly as you go down the "rarity" scale. In fact, some are never even given a chance at all.
I understand the difficulty of a life with a challenged child. I lived it for 16 months. I had the highs, I had the lows. But the thing is, the Trisomy babies I meet, including my special Mikayla, are very often FIGHTERS. Whether they fight for 1 hour or 65 years, they have a spirit in them, that the rest of the "healthy" world don't often have. They are courageous, and offer so much to a broken world. They bring immense joy, and leave behind a river of tears in their absence. They're special in every sense of the word. And while the road is hard, there is hope... and some soar through their adversity.
And what much of the world DOESN'T realise, is that they're humans. Just like us. They hurt. They laugh. They love. Just like us. And just like us, they are WORTHY.
Every Trisomy child is a gift from God. They come with broken bodies sometimes, but they have whole spirits, just as God created them- and just as God sees them.
Learn about Trisomys. There are more cases out there than you know. There are translocations, Mosaics and Partials. And the presence of other Trisomies. Although rare, they're there. And there are mums who need to have time out sometimes, perhaps a dinner with their husband, or a meal. Sure, they look like they're coping, but that's cos they have to. Don't forget about them. Sometimes it's the small things that can make such a big difference.
Mikayla had FULL Trisomy 18, meaning that EVERY CELL in her body contained a third strand of the 18th chromosome. Yip, in a nutshell, my child had something EXTRA. I reckon that made her EXTRA-ordinary!
Miks when she was about 4/5 months old. I LOVED her goofy smile that she did when we wriggled her legs. Miss that smile like MAD!
I am a dog. I'm not sure what kind. I am definitely not a pedigree, but I am certainly the fiercely loyal kind, as most dogs are. I have been brought to a garden. It is beautiful.
There are big lucious beds of flowers, and green lawns. I am happy.
But then I look again, and I realize there are large dark walls around the garden. Suddenly the garden seems small, and the walls unscaleable. The walls cast big shadows, making the garden feel cold and uninviting. I wonder how anything will survive without enough sunlight.
I am afraid. I put my tails between my legs,and curl into a ball. I whine: a low, soft, lonely sound. It echoes, making a soft wailing reverberation around the garden.
And I wonder where my master is? Why he left me here? Why isn't he fetching me and taking me to a large open park somewhere that I can run and be free? Where he can throw a ball for me, and pat me, and love me? Have I been a bad dog? I can't understand it. I am confused.
I hear a sound. I think it may be my Master. I go to the door of the garden. I scratch the door. At first, it's just a gentle scratch. I fear I may be wrong at first. I scratch a bit, just near the bottom of the door, where the sound is no louder than a mouse. Then I wait. Yes, there's definitely someone there.
I stand a little straighter. I sniff a little. I am cautious. Then I scratch some more. This time louder. I make small whinnying sounds. And the noise from the other side is louder. I think he hears me now.
So I bark. I bark loudly. Oh, the joy! I know he hears me! I hear the boldness of his footstep, I feel the heat of his hand on the door handle. And, as I watch the doorknob turn, I know finally that I am free. He came. Yes, he came for me.
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.
Today, I packed your clothes away. I haven't given them away, or sold them... just put them in a box. And it was hard.
There were clothes there that you were given before you were even born that you'd never ever worn. And clothes that you'd worn so much that looking at them was like looking at you.
16 months and 2 days of living.. the proof of your life, packed into two boxes, not even a 1m2.
I wonder sometimes why this happened. I rationalise all the good in it...and some amazing good has come of your short life, I know this. But there is a part of me that will always question our loss.
I guess, when it comes down to it, I just can't believe sometimes that the one thing I had hoped, dreamed of and prayed for, was that thing that I lost. Not that any other loss would be better... but yet somehow this one feels worse.
Can you ask Jesus why, my baby? Would you do that for your mother? Would you ask Him why? Because no-one can heal this hole in my heart other than Him.
Let it be said that we're ok. We're fine, actually. But sometimes, when I sit down and think long and hard about you. When I try remember your smell, or the sound of your voice... when my whole being aches to hold you, love you and kiss you... in those moments, I wonder how it is that we're just carrying on?
I know, by the grace of God, He has brought us through, and will continue to hold us, and take us through. But this is the strange thing about death: life carries on. It should. And it does. But sometimes... sometimes I just want everything to stop. Just for a moment. For the whole world to stop spinning. To pause. And remember.
Because, I am so scared to forget. I know I will never forget you. But I am scared I will forget the small details of you... the things that made you who you were. The shape of your head in my hand. The feel of your hair against my face. The texture of your skin. The coolness of your feet. 16 months 2 days. Miks, it was gone so quickly... how am I going to hold onto those little things that you did for 491 days, for the rest of my life?
Your clothes are not you. The pictures on the wall do not replace you. All just resemblances, or symbols of who you were for your short time on earth. 491 days for a T18 baby... well, miraculous, really... and LONG. And yet... so very, very short.
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 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.
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.
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.
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.
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.
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.
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!
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.
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!
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"!
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
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.
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.
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....
I am a bit slow off the mark: but March is Trisomy Awareness Month, with the 18th having been Trisomy 18 Awareness Day....
I think awareness should be particularly pertinent in this country. When we first heard the word Trisomy 18, we were like "huh, Tri.. WHAT??". A relatively rare disorder- alot of the Trisomy 21 (Down's Syndrome) mothers, haven't even heard of Trisomy 18. But what about T13? Or T9? Or translocations? Or mosaics? There is alot about these disorders that I haven't even touched on- and really have just shared my experience of T18 through my daughter.
There are no support groups in this country, and I did not receive so much as a leaflet when I left the hospital with Mikayla. Obviously the doctors knew I was doing research, but information I have I have found out through the net, and through a wonderful network of mums and dads- most of whom have found ME. I am so grateful for these world wide web friends. Without them, I don't think I'd have come as far as I have. To all you wonderful mums and dads out there: THANK YOU! Your calls, FB messages, sms's, emails etc etc mean more than you will EVER know.
To all the beautiful little children who have struggled, and fought. Who have been courageous, and graceful; some who continue to do so today, and some who got their wings, and are now with Jesus: thank you for all you have taught me. Thank you for showing me the value of life.
To my beautiful daughter: there are no words to say how in awe I am at your bravery. I whisper all my thoughts and hopes and dreams into your precious little ears, so you know my heart: but I will just say this: I love you. So very much. Thank you for allowing me to be your mother. And for giving me time to love you. Everyday is a blessing. I admit, there it is often bittersweet- but what will never change, is how very much I love you. Always. And forever.
As for an update on Miks: she is well. We have had a funny two nights, in that she keeps getting a really snotty nose.... and so she's been a bit frustrated... particularly if we resort to the "snot-a-la-tor"... but otherwise all is well.... we're on the countdown to a family holiday at Umngazi!! Can't WAIT!
