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

xxx

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"

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.

Author......unknown

 

Forever and for always you loving mum

 

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
 

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

 

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
 

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 !!!!!!!!!!!!!!!!!!!