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

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 !!!

 

 

Not a natural chain of life

Good morning my precious.

Mommy has a very grateful but heavy heart today, and I know that no matter how "on guard" I am or try to be, thoughts creep in and last night was one of those moments.

I was watching a movie called The Christmas Shoes and it was about two families who, through sad circumstances cross each others paths. One where the father spends all his time working and pretty much none of his time with his family and the second family who spend all their time together and the mother has a heart condition which cannot be fixed. The family prepare themselves for the inevitable and "mom" says goodbye to her family, a very heartbroken husband and her very young son.

At this moment these thoughts started creeping into my head and as strange as it sounds, my first thought was that this is how it is supposed to be. Parents are supposed to gain their wings before their children and not the other way around. Not me having to let you go, but you having to let me and daddy go and living your life to the fullest. Growing up and going to nursery and primary school and then onto high school. Experiencing falling in love for the first time and treating your girlfriend like a queen, just like daddy does me, and finding that special lady that you want to spend your life with and me crying tears of love and happiness the moment your bride walks down the isle and I know its that time when I need to let go and allow another woman to love and cherish you. Getting to see you experience the joy of parenthood and me experiencing being a grandmother to my only son's children.

It saddens me to know that this will never be, for our lives will take the course of an unnatural chain of life. You will never grow to have a physical verbal conversation with me, - yes you converse with me and yes its awesome. I wish I could understand what you say and what goes through your mind. You are at the age where we should be running around after you playing hide and go seek, teaching you to kick a ball and making sentences and painting and drawing, all the things a 3 year old would do.

Yes as much as you are a blessing to us and as healthy as a trisomy child can be - my mind still has some of those thoughts and not that I alway show it, but there are those moments when my heart cries out, in actual fact it sobs, BUT I know that you are our special blessing from God, and as hard as it is, it is most rewarding and if we had to make a decision, like the one we made on Old Years Eve in 2009, where daddy and I decided that how you would come into this would be up to you and God alone - we would most DEFINATELY make the same decision again.

Somehow I think you knew I was feeling this way because early hours of this morning you woke up and wanted to know nothing but being in my arms and cuddling in bed with me, no crying or moaning, just snuggling into my neck and sleeping peacefully and soundly.

Love you more than words could say my angel !!

A few long and not so happy months

Helloooooo my gorgeous little prince. Yes yes I know I havent been here in a while and partly feeling really guilty and completely frustrated. Frustrated because something seems to have changed on this site and I battle to upload photos and to actually write to you because things just seem to become "Sticky" and I cant save or change anything

Anyway before I get entirely frustrated again, let me carry on while I can. the last few months have not been the easiest. Something happened to your sleeping pattern and up till about 6 days ago, we had kind of been lacking sleep for a while and we just couldnt seem to figure out why. During the day you were fine but at night you were cranky. We increased your feeds thinking you were hungry, but that just made it worse. We decreased your feeds thinking maybe you were getting too much and were uncomfortable. We thought maybe you were teething, constipated, or even just being a kid .... nothing seemed to work .... I think this is the first time that I have been entirely frustrated because we just couldnt figure it out. Daddy and I then decided it was time to take you to your doctor, maybe he could figure it out because heck knows we were completely out of ideas and enough was enough.

I have spent many a morning driving to work and finding myself crying and not knowing why. Now in hindsight I guess it was frustration and exhaustion. Yay something, we found something, not sure why we didnt register but yeah, I guess thats what exhaustion does to you. So your doc was happy with everything except for the fact that when he pressed lightly on your tummy you kind of flinched and drew your legs up. So straight away he diagnoses and acid build up. Well yeah it figures cause the one night or should I say early hours of the morning I connected your tubes and you pushed up all this acid. But it didnt concern me becasue it was only one night and it has happened many times and its never irritated you so we sort of ruled that out.

Daddy and I were so relieved it was nothing serious and that we could go home and give you some meds for a few weeks to resolve it and whaaaalaaa. BUT that wasnt to be, you stayed niggly and daddy and kept on saying to ourselves, give it time, the meds need a few days to work. Four days later was enough and we were back at the doctor. So by now your chest was a little iffy, but pretty much normally what it is, so nothing to worry about but your doc wasnt taking any chances. We got you straight onto antibiotics and for the next two days you were back to my happy little pumpkin. It didnt last very long but those two days were pure bliss. By Thursday night you were snottly and phlegmy and it was too late to get you to the doctor. I toddled off to the pharmacy as we always have a back script of meds for you ..... well normally we do ..... that wasnt to be either. At this point I just wanted to sit down in a pit and hope that it would swallow me there and then. Fortunately we have a wonderful pharmacist who actually gave me all your nebs meds without a script - Thank you Heavenly Father for your angels - Mommy pumped you with the nebs and you most definately werent happy but you had a relatively good night, and when I say a relatively good night, you still woke up and were still niggly but no where near what it had been.

Friday to Sunday you were fabulous and back to yourself again, and then Monday rolled on - NOT SO GREAT - so off to the doc again and this time treating you at home was just not going to happen. By this time I just could not control any tears flowing down my face and quite frankly I just didnt care who saw me or what people thought - I think sometimes being tired has its benefits - A whole lot of tests were run, bloods, xrays, mucous, urine, stools and and and although it sounds a heck of a lot to parents with "normal" children - yeah you guessed it - its NOT normal but its OUR normal. FINALLY a diagnosis - bacterial pnuemonia and oesophogitis - an infection in your oesophogus and let me tell you this was not pleasant - this infection made your breath smell like your insides were rotting - but thanks to another angel of yours - yep your doctor - it was nothing that two different antibiotics 4 times a day couldnt fix !!

So we are back home and so far so good - lets keep it that way my sweet little boy - dont think I could manage another crappy week for a while. Love you to the moon and back.