Letters to Lior

Trsiomy 18

There are 23 pairs of human chromosomes. In Trisomy 18 (Edwards syndrome), there is an extra chromosome with the 18th pair. Like Trisomy 21 (Down syndrome), Trisomy 18 affects all systems of the body and causes distinct facial features. Trisomy 18 occurs in 1 in 3,000 live births.It is three times more common in girls than boys. Unfortunately, most babies with Trisomy 18 die before birth, so the actual incidence of the disorder may be higher.Infants who survive, experience serious defects and commonly live for short periods of time. Trisomy 18 affects individuals of all ethnic backgrounds. Trisomy 18 severely affects all organ systems of the body.The majority of children who are born with Edward's syndrome do not live past their first year of life. Their average lifespan for half of the children born with this syndrome is less than two months; approximately ninety to ninety-five percent of these children die prior to their first birthday. The five to ten-percent of children who do survive their first year experience severe developmental disabilities. Children who live past their first year require walking support and their ability to learn is limited. Their verbal communication abilities are limited as well, although they are able to respond to comforting and have the ability to learn to smile, recognize and interact with caregivers and others. They can acquire skills such as self-feeding and rolling over.

Tuesday, November 18, 2014

Forever counting

Ai my binky bums - the last few days have been so incredibly difficult and emotional - I miss you so so much.
It has been a little over six months now your little body is whole and that you are running freely with our heavenly father - it feels like just the other day but yet a life time that you gained your wings.
Whilst you were with us big boy, we were forever counting and celebrating the days, weeks, months and years we had with you and cherished every moment, and now even when you are not with us, we are counting the days, weeks and months that you have been gone. I don't thing we really know how else to survive - just day by day I guess
The fact that Christmas is around the corner and it will be our first without you makes my heart shatter even more. I know its a time that we should celebrate and be thankful, but I am no where near that frame of mind, in actual fact I am not looking forward to it at all. Would be quite relieved if it never comes.
I know we have many "first" milestones that we still need to get through and maybe once we have gotten through all the very special days like birthdays, Christmas, Easter and other days, maybe then it might become a little easier, but somehow my heart tells me it will never become easier. You are our little boy, our little miracle and should be here with me and daddy and your sisters.
We shouldn't have to be living life without you - its just too hard L

Tuesday, October 21, 2014

Bits and pieces

Mommy's sweetest little binky bums

No need for me to tell you just how much we all miss you - I know you are watching over us and see all the sadness and heart break and then the comforting moments cherishing all the memories we got to make with you,  and just having your beautiful face all around us.

Your garden is blooming at such a speed and is looking absolutely beautiful, all the roses are in full bloom and it smells absolutely wonderful. Although we still have a lot of work to do, it is exactly what we wanted. With all the wind that we are having at the moment we are continuously hearing the wind chime in your garden, which sounds just like your favourite giraffe rattle you always played with - both comforting but also very heart breaking to hear. You know sweetpea, I have also attached your giraffe rattle ( the new one you got for your birthday) to my rear view mirror of my car, so that I can hear the chimes whenever I am driving. Daddy thought it may get too much for me, but it has really been a saving grace for me.

The last week has been incredibly difficult for me, many times now I find myself crying and wondering how you are. I know that you are with God and I know that you are whole and looking down on us, but somehow I just need to know, just need to see that you are okay.
My longing for you has been so incredibly intense that I just don't know what to do with myself but cry. I cry when I wake up, I cry when I lay in the bath, I cry on my way to work, at work, on my way home from work ...... I just cry. I feel like I am losing total grip on reality and the strength that I have been holding on to. The sadness has been completely overwhelming.

I know I should be celebrating your life, and I do ..... but I am totally heartbroken. Daddy and your sisters also miss you terribly, A lot of the time I see them just staring into nothingness and I know they are thinking of you.

As I sit here at work today - my tears are flowing even more, out of sadness but also out of comfort, that we were able to help someone in need. You see baby boo, before God came to take you, we had ordered more feeding tubes for you which we did not get to use. Daddy and I donated these tubes to an organization called Rare Diseases South Africa - and these tubes went to a beautiful little four year old boy by the name of Jaydon. There was no guarantee that Jaydon would get these tubes, and I know that there are so many children that need help, but deep within my heart I was hoping that precious little Jaydon would receive them and today we got confirmation that he did. This my sweet angel pie is one more step in keeping your beautiful legacy alive and it makes me proud that we can do this on your behalf.
Love you and miss you so so much
All my love and kisses

Thursday, October 2, 2014

Heaven's special child

Heaven’s special child

A meeting was held far from earth
‘It’s time again for another birth’,
said the angels to the Lord above.
“This special child will need much love.
His progress may seem very slow,
Accomplishment he may not show;
And he’ll require extra care
From folks he meets down there.
He may not run or laugh or play;
His thoughts may seem quite far away.
In many ways he won’t adapt
And he’ll be known as “handicapped”.
So let’s be careful where he’s sent,
We want his life to be content.
Please, Lord, find the parents who
Will do a special job for You.
They will not realize right away
The leading role they’re asked to play.
Comes stronger faith and richer love
And soon they’ll know the privilege given
In caring for this gift from Heaven.
Their precious charge so meek and mild
Is Heaven’s very special child.”

Wednesday, September 3, 2014

So hard and so lost

My precious baby boy

This week has been so hard and I have been so lost without you. When I get home most nights I walk into the lounge and just rest my hands on your ashes, as if I will get some comfort just being able to touch you, even though its through a beautiful box. My heart is so broken.

My tears just keep flowing and I don't know how to stop them, every second of your last moments keep playing through my mind over and over and over again

Since Saturday  I have been incredibly emotional. I normally don't and never used to shop at Woolies unless I was buying you clothes. Anyway daddy needed to get some stuff and after being there for about ten minutes I felt like I couldn't breath and needed to get out of there - I knew exactly why  L then on Sunday Aunty Ursula told me she had a dream about you. She dreamt she heard laughing in her lounge and when she got up to see what was happening, there you were laughing and playing with bubbles. This is such a beautiful dream and brought me to tears instantly. In my mind I can just picture you doing this because you always were such a happy boy and always content with anything.

So two days of build up and Monday all I did was cry. If I had to try and tell you how I drove to work I wouldn't be able to. Why cant I dream about you, why cant I feel you - I am so lost and heartbroken and everyone else seems to be able to and I cant. I need the comfort to know you are ok.

I love you so so much my baby angel and maybe one day I will learn to live with this but for now, it just hurts too much.

Fly high sweet angel and soar the skies.

Thursday, August 14, 2014

3 Months gone

My precious little Angel

Yesterday was three months since you left us to go be with Jesus and out of all the days since, it has been the most difficult.

I miss you terribly and just wish I could feel your presence like daddy does L

Love you binky bums

Tuesday, July 22, 2014

Just about sums it up

Aah my big boy ....

The days goes by so quick yet seem so long at the same time. Time doesn't seem to be healing, maybe because I have tried to be strong and now it just doesn't feel like I can anymore.

I read something the other day which pretty much sums up how I feel .......

"I have arthritis of the heart and every inch of my soul aches.."

I don't think any other words can explain it better than that and if that doesn't explain it, then nothing ever will. My body physically aches, my heart physically feels like it has been broken into pieces or as if it is pulling so tight all the time. I am continuously tired and seem to cry a lot more.

I guess now and its probably only human, the questions now start and I seem to torment myself;

Was I a good enough mommy to you?
Did I give you everything you ever needed?
Did I cuddle you enough?
Did I love you enough, the way a special needs baby is supposed to be loved and for that matter the way any child is supposed to be loved by a parent?
Did I play with you enough?
Did I keep you comfortable enough?
Did I do enough to keep you pain free?
Did you know that I loved you so much, was I able to make you feel the love?
Did I tell you that I love you enough - even though I would say it out loud and whisper it to you several times a day?
Did I do what God expected me to do when he gave you to me?

And then the biggest question of all, WHY and HOW ... what actually happened that you were taken from us. Were you tired and just couldn't any more? Was your little body poisoned from your colon? Could I have saved you. If only I knew why. So many more questions and I cant seem to answer any of them or find any comfort in anything ..........

Never a second that goes past that I don't think about you.

Love you to the moon and back. Love you more than all the grains of sand in the desert. Love you more than anybody could ever imagine


Wednesday, July 9, 2014

Still true

If before you were born, I could have gone to heaven and saw all the beautiful souls I still would have chosen you

If God had told me, "This soul would one day need extra care and needs"
I still would have chosen you

If He would have told me, "This soul may make your heart bleed"
I still would have chosen you

If He had told me, "This soul would make you question the depth of your faith"
I still would have chosen you

If He had told me, "This soul would make tears flow from your eyes that could fill a river"
I still would have chosen you

If He had told me, "This soul may one day make you witness overbearing suffering"
I still would have chosen you

If He had told me, "All that you know to be normal would drastically change"
I still would have chosen you

Of course, even though I would have chosen you, I know it was God who chose me for you"

Wednesday, July 2, 2014

Trying to survive

Hello my precious.

These letters seem to be getting harder and harder to write....

People say time heals but it really doesn't. As time goes by it becomes harder and harder to know that you are no longer an earthly angel.

This is the last photo that I got to take of your beautiful face and gorgeous smile - even though you weren't feeling well - I do believe you were smiling at your angels because you weren't facing or looking at me - its as though you were in another world.

This photo captures every essence of your being.

I guess the hardest part is that we don't get to see new pictures of you. I go on to my phone and open up the folder and I still expect to see new photos, and then I realize I will never and this will be the most recent and last one I took.

It breaks my heart baby boy - Daddy and I feel like we are just trying to survive and not doing too well at it.

We don't really know how to cope, besides to slap a smile on our faces and pretend to everyone else that everything is ok - well at least that's the impression that everyone seems to get. But in fact we are dying inside and barely surviving.

I love you baby and miss you more than words can ever begin to explain.

I found this the other day and it is pretty much true:

"My Mom Is A Survivor
My Mom is a survivor, or so I've heard it said.
But I hear her crying at night when all others are in bed.
I watch her lay awake at night and go to hold her hand.
She doesn't know I'm with her to help her understand.
But like the sands on the beach that never wash away...
I watch over my surviving mom, who thinks of me each day.
She wears a smile for others...a smile of disguise.
But through Heaven's door I see tears flowing from her eyes.
My mom tries to cope with death to keep my memory alive.

Forever and for always you loving mum


Friday, June 20, 2014

Our go to place

My precious baby angel - the days seem to go by so fast yet so slow. It has been a little over a month now that you are dancing in heaven. Time has gone by so quickly yet it feels like a life time. We are missing you so so much and there is just such and empty void in our lives, at home and everywhere else.

My arms long to hold you one more time, my lips long for one more sloppy kiss, my nose longs to smell your breath, my eyes long to see  those beautiful sparkly eyes and my skin longs to feel your warmth - I MISS YOU, I MISS YOU, I MISS YOU - I just don't know how else to say it.

I look at your photos and I wonder how much your face would have changed in the time that you have been gone - its so hard not being able to see new and updated pictures - its so hard not feeling your presence.

Daddy and I decided that we needed to do a garden at home - our go to place for when we need to talk to you and "be with you". Its taken a lot of hard work and a lot of helping hands from the family and it is looking awesome. I cant wait till all the flowers bloom.

 There is a beautiful lantern which shines to bright - just like your little light will always shine

 A little angel who will always watch over us - just like I know you will

 A beautiful bench with a lovely wind chime where we can sit and talk to you. Although your garden looks absolutely beautiful now as is - when its full of colour it will remind me of your beautiful and colourful spirit - one that never seemed to dim no matter how you felt.

There are beautiful rose bushes that are waiting to grow - for God's beautiful rose that he had to come and fetch.

We love you to the moon and back baby boy and miss you immensely.

Love Mommy

Wednesday, May 28, 2014

Reaching far and wide

Hello my sweet baby boy - I know you are no longer here with us, but I still find it healing to write to you - I miss you so !!

We had your Celebration of Life Service on 19 May, and only once we had finalized all the arrangements did mommy realize it was your sister's birthday L
Tannyth was more than happy with it, she said that it made her day even more special.

Standing up in the chapel was the hardest thing that I have ever had to do, I was and am completely heartbroken, but I was so proud to talk about my little boy and how your little light shined for everyone.

We could not have imagined a more beautiful service. It was just the way we wanted it. Daddy and I decide that we needed to give you a really beautiful final salute and by doing this we would release a balloon for every day of your little life - 1475 balloons. There were 4 white balloons which daddy and I released and the rest were blue. It was the most beautiful and magical sight ever for an incredibly magical little boy. Even the gentleman who drove you away, drove so slowly because he was in awe and didn't want to go ahead of the balloons.

There was no way of knowing how many people would attend your Celebration of Life. There were close to 160 people and I got so many apologies for not being able to make the service. I was in awe big boy, I know that there are so many more people that would have liked to attend had they been close by. I finally realized that we will never be able to fathom how far and wide your little light has reached and words cannot begin to express how proud I am of our beautiful little Trisomy 18 angel.

We continuously have a candle burning in the lounge for you, and it is comforting for us so we will keep burning one for as long as we need to.

We got such a wonderful surprise from uncle Steve the other day, he sent us a message to say that he bought a star in the Northern Hemisphere and named it after you with this message on the certificate

"Hold tight the days you loved, laughed and played
Include the morning giggles and snuggles
Years back and forward Lior's love remains

Like wings of a Dove showing strength and solace
The Barrington Light shines for always - Love you'

It was the most beautiful gesture ever and now we know that your light will shine down on us for eternity.

We have received so much love and support and compassion from so many people that it is actually hard to believe. But for us this just shows the impact that you have had on so many. You have changed so many people's lives big boy, more than anyone would ever know - and I am so proud say that I am a mommy of a Trisomy 18 boy.

Miss you with all my heart my sweet angel


Monday, May 26, 2014

My little lion's final roar

Oh baby boy, where does mommy even begin. My heart, our hearts are forever broken and it feels like life will never go on again !! I miss you so much and my arms feel so empty. I yearn every second of the day just to be able to see you, feel you and hear you. My heart aches just to have one more cuddle, to hear one last giggle, to be able to feel my skin against yours and to give you one more kiss, and just to feel your fighting spirit.

You grew your angel wings on Tuesday 13 May 2014

Your daddy and your sisters are missing you so much as well. Tia cries for you constantly and the rest of your sisters, well, they are quiet and I know they are dealing with losing you in you in their own way and the storm is yet to come.

I worry about daddy, because daddy being daddy, he feels he needs to be strong for everyone. I see his tears coming and he always pulls them back. I keep telling him that its your turn to look after us now, but as you know daddy, he insists.

The house is incredibly quiet, for a little boy who was supposed to know nothing and do nothing, you were very loud and boisterous. Always competing with the tv or the radio and between you and your sisters as to who could shout the loudest. The shouting with daddy and both of you competing with each other and the laughter that came afterwards .....

The worst part is when we go to bed at night, I realize now, the steady sound of your breathing always made sleeping easier for us - and now there is this deafening silence and sleep just never seems to come, no matter how tired we are. Even Whiskers (the cat) refuses to climb out your cot - and she always knew it was out of bounds for her.

I know your last days weren't the easiest for you baby boy and I can only hope that we kept you comfortable and loved you as much as you needed and even more and that you could feel that love.

I know everything happens for a reason . The hospital you were in when you grew your wings was one of the most beautiful we could have ever asked for. There was a magnificent rose garden just outside your window and I imagine that you walked through that garden because your little legs finally allowed you to - because you are whole now. No more T18 and no more pain.

My angel, our heavenly angel, the world's little lion, you gave us one final roar and although we have been the only ones to hear it, the world will never stop feeling its tremor for many many years to come. Your little light has and will always shine incredibly bright.

Love you and miss you incredibly my little pumpkin

Tuesday, February 11, 2014

A letter to my Mommy and Daddy

Dear Mommy

I know I cant write to you, but this is exactly how I feel:

Special poem for parents with a child who has special needs:
Dear Mommy, don't you cry now
and Daddy, don't you weep.
I want to whisper in your ear
before I go to sleep.

I know that when I came here
I seemed perfect in every way
and you were so proud Daddy ...

when you held me on that day.

And Mommy when you kissed me
and wrapped me up so tight,
I felt as if I belonged here,
and everything was right

When things got really scary
and I began to slip away
I saw your face, dear Mommy
as you knelt by me to pray.

And Daddy, I always notice
when you wipe away a tear,
or watch the other little boys
as they run and laugh and cheer.

I may not be able to tell you
how much I love you so,
or even show you how I feel
and what I really know.

But when you hold me Mommy
at night when all is still
I hear your dear heart beating
and I know that all is well.
And Daddy when you take me
to the park, to run and play
I know that you still love me
though the word's I cannot say.

So Daddy don't you cry now
and Mommy don't you weep,
I want to tell you something
before I go to sleep.

I may be sort of different,
and you may not understand
I know that I am not that child
that you and Daddy planned

But I love you both so very much
and I know you love me too
and one day when this life is done
You will feel my love for you.

I know the future is unknown
and you will always have to be,
the ones who love and listen
and take good care of me.

The road we walk is rough sometimes
and you cry a lot of tears,
but one day we will turn and laugh
as we look back over the years,

So Mommy don't you cry now
and Daddy please don't weep
I want to say, I love you
before I go to sleep.

~ By Sally Meyer

I love you all so much !!!!!!!!!!!!!!!!!!!

Thursday, January 30, 2014

Tired tired tired

Hello my precious little Angel

 Wow it really has been a long time since mommy has written to you, I really must make more of an effort to get on here at least once a week,

There is so much yet so little that has happened but the one thing I do know is that it has been tremendously tiring for all of us.

We all had a good Christmas, even though you were a little cranky, but somehow it seemed you knew it was Christmas and weren't going to make it a niggly day for you or for anybody else. As sick as you felt you still smiled and loved everybody as you normally do. I cant really say the same for the day after though . Once again you weren't feeling great and mommy was unable to get hold of our doctor because he was overseas - lucky him :) - anyway we got some meds from the chemist and tried to do the best we could but there was no improvement. Fortunately the day after, your best friend - the doctor that is :), was back and was quite happy for us to bring you in. I guess both mommy and daddy knew that we wouldn't be going home and would be having another stay at the hospital. Wasn't such a long stay but 4 days is definitely long enough.

The last two or three weeks have particularly been tough on all of us, especially you. Somehow I don't think the virus you had in December completely left your body, even after all the treatment you had. You have been sleeping so much - now let me explain - normally sleep for you is pretty much non existent - but the last three weeks you have had sleeping marathons, anything from 9 hours to 26 hours ....... jip that long. Last week your little body just couldn't cope any more, you had so so much pain and no matter what we gave you it just didn't seem to ease any of the pain, not even the slightest. Your doctor was very concerned and said something serious is wrong - guess he knows how to put the panic right in to us - I understand where he was coming from, he has always been up front. His major concern was that you are sleeping so much and with you being almost 4 years old now, he was worried that you are at the age where .... well I don't even want to say it. He was concerned that you may be going into heart failure. Not the easiest of news to let sink in - not for anyone !!

With all the blood tests done your white cell count was incredibly low and told us that you had a severe and not so pleasant virus - pretty much something on the same level of swine flu.

We decided that we needed to have a heart sonar done so that we know what is happening. I guess I was really scared cause I wanted to know but I didn't want to know if my baby was slowly dying :( I kept fearing the worst, that they would tell me the leakages have become so much that you just cant cope. That your scoliosis is crushing your little heart and putting too much pressure. Through all this which I didn't even think about, your heart rate and saturation levels were really good.
The heart specialist came and we did the sonar. With great relief for us and I think also for the doctor. we were informed that your heart is normal. All the defects that you had seemed to have rectified themselves, ok let me rephrase that .... all your defects had been healed by God !!! Your heart is normal, the size is normal, the blood flow is normal and the functionality is normal. You are a trisomy 18 baby with the heart of a normal child. This was the best news ever. Instantaneously we felt the pressure lift. Instantaneously I had goose bumps. Instantaneously happy tears flowed.

We have been home for a few days now and I cant say that you are 100% better. Slowly slowly seems to be the way. We have a good day and then a bad day and the a just sleep through everything day. 

For now we are taking it day by day and step by step. Love you ever so much my little  monkey !!!