Living Arrows {21st July 2014}

Written by InnocentCharmer. Posted in 2014, grayson

Our everyday is probably a little different, but that is ok, because with every scary or hard moment it brings a moment which warms the heart.

Grayson had a hard week, but in true Grayson style he beat every expectation we as parents had for him, he in true Grayson style was a Superhero, he has been doing a lot of that lately.

Although I sobbed hard silently for the 5 minutes after he was put to sleep in Ashley’s arms, feeling angered that my little boy had to do this again, when he came round he was like any other little boy, all he needed was Daddy and Mummy cuddles, selfishly I have to say I enjoyed this so much, not his pain but the most intense cuddles I have felt from my little boy in a very long time.

#livingarrows

As Ashley cradled our eldest son I stopped, seeing Grayson sigh with relief and sink into his Daddy’s hold, he may not be able to communicate with us, but for that moment he did, for that moment he said thank you for being here Daddy to look after me. 

Don’t forget to check out all the beautiful children growing each week with the help of the Living Arrows project from I Heart Snapping – in particular this week I want to send you onto one of the Living Arrow contributors blogs – Emily – Emily is a truly gifted Photographer and her boys touch my heart each and every day. You will not meet a more beautiful person than Emily on your travels.

living arrows

Living Arrows {14th July 2014}

Written by InnocentCharmer. Posted in 2014, grayson

Seeing your children grow is a pleasure that we must relish, the girls at I Heart Snapping realised this and created a wonderful weekly linky called Living Arrows. I love taking part and creating a small diary of events in my babies lives.

living arrows

This week has been a hard week for Grayson and us as Grayson’s family and the next shall not get any easier, so it was lovely to head out to an early dinner with family on Saturday and then to a park on the beach for an evening swing.

Swinging is one of Grayson’s ultimate past times, he would do it for hours, now he is enjoying even more when out and about too as he is finally noticing a world further than his own.

Watching him enjoy the sea air and look as his cousin Ivy giggled in the swing next to him was just magical.

#livingarrows

Do go and check out some truly beautiful photos over at I Heart Snapping.

Dear Grayson….a true superhero!

Written by InnocentCharmer. Posted in 2014, grayson

To my big little boy, my superstar, my superhero, the most amazing boy on the face of this planet.

It has been a long time since I wrote to you, a very long time since I have written of you and your updates properly on the blog.

Don’t ever think for a second it is cause I am not proud of you, or no longer want to share your story. It is cause I have as your Mummy been fighting with many demons, ones I am struggling to resolve. My strength for you has been hard to keep constant. I feel like a failure to you my baby. I am your Mummy and I was given the task to keep you happy, to protect you, guide you, make life amazing. I feel I am not achieving that. I want to push that magic button. I need to. I 5 years on seem to be grieving more than I did 4 years ago when we realised your life would not be so smooth sailing.

swan child

Dealing with the knowledge that it is solely due to me you are this way haunts me daily, seeing you struggle in pain, listening to your breaths stop at night, never knowing what the next day shall hold for you and it is my fault.

But beside all that the love, compassion and above all else PRIDE I feel to be your Mummy, to have you as my son is what spears me on. You never complain. Seriously, what type of person doesn’t complain at being dealt such a hand – a genuine SUPERHERO that is who.

These past months have been hard and awesome all at the same time. You nearly left us on your birthday, you as always said “NO WAY” to those doctors. You told them they have no clue, you are a miracle and came out the other side even stronger. Learning to walk when we were 95% told medically you in no way ever could! You are now known as the self healing child, my miracle. Your walking journey has a long way to go, you may never manage without aid fully, but you will walk me down that aisle in November and I shall sob.

Miracle number 2 – we found out you have a serious, rare type of apnea and on a good night you stop breathing up to 200 times a night! I can not believe you are still here, I knew in my heart but so glad they finally see it. You still get up each day and perform miracles, learning to chew food, to walk in school, to tolerate crowds at school to leave the house and not meltdown, to look me in the eye (if only for a minute) to hold my hand.
But with all this comes worry and one of the most fearful reactions by doctors Mummy has ever to deal with. I have not slept since our meetings on Thursday. I am your Mummy you are not allowed to see my fear, but I have more than I know to handle for you my baby.
I am sure we can find a way. Promise Mummy like always before you will fight, promise me you will prove the doctors and even me wrong, there is never a time I needed you to more. Cause the alternative is not acceptable and does not bare thinking of.

Thank you Grayson, I daily feel anger for you, not towards you (well apart from your naughty willy touching) but because you deserve to be feeling the wind in your hair as you run, to sneak sweets when I am not looking, to play with toys and smile. But you don’t complain, you enjoy your world (I hope), you have touched more hearts than anyone I know, you make people look at the world differently. You have made me. The good and the ugly.

Grayson

I love you, there are no words that explain how I feel, I love you is not enough. We shall fight these new very tough challenges and if that worst case has to happen we will say F**K you and make it! Because you are a star living on earth!!!!

**please if you feel in anyway I am asking for pity in this post, or do not like the honesty about living a life with my son move on and don’t comment, this post is not for you. It is for me, it is for my son and for the many people I am thankful I have to support me. Life is not a bed of roses, it is bloody difficult. But I love my son no matter what. Would I want him normal – hell yeah, but I would never not want him here.

Flashback Friday – My Superstar Grayson

Written by InnocentCharmer. Posted in 2013, grayson

mummy mishaps

 

It’s been a while since I have joined in with Jenny from Mummy Mishaps Flashback Friday linky, I love doing it as, looking back at old pics is so much fun.

I usually try to tie my Flashback in with what is happening in my life at present, but other than being manic and no time we aren’t doing anything fun. So what to share.

Then it hit me, Grayson is all over the web right now (lucky he is so darn cute), why ? Due to Raising For Grayson and an amazing group of friends that are helping to get him equipment he really needs.

So I thought back to when we really didn’t know anything was majorly wrong with Grayson, it was early on, other than feeding issues no one believed me those first few months that there was something quite not right, but when Grayson was 14 weeks old he stopped breathing and our lives changed, it’s scary to think that is the same age Deacon is today, how up to that point he was “normal”.

So today I am sharing pictures of my superstar just before his 1st major episode, the week following this Grayson and I lived in hospital in and out (but mainly in) for 3 months, but no matter what this little boy has opened my heart to so much and I am thankful that everyday my miracle baby is here to share them with me.

grayson 13 weeks grayson at 13 weeks

Doesn’t he look like Deacon?

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