Grief and Rainbows- He's still here.

Quote from @lorelei.poetry

Grief. Something I never thought I'd be experiencing the way its happening. Grief to me is about having the loss of someone or something that you've formed a bond with has died. Yet Kye's still here. I don't know how this is my beautiful boys life. Physically he's here, being the vibrant, wiggle, train and block loving little boy with such and I can't seem to stop thinking how different this is to any other form of grief I've grown up knowing. Its like I don't feel the I'm allowed to be feeling the stages of Grief. I've felt them all and I don't think I ever wont.

The stages of Grief are something I've never had to google or go through in my lifetime until now. Its funny how literally the morning of the worst day, I was talking to my sister in how we are very lucky to have never experienced the loss of anyone that we held most dear. Only hours later I got the news that I'd be loosing someone I'd never thought I'd ever see loosing in my lifetime. My Beautiful boy Kye. And in this short two months I've experienced all the stages and then gone back to the start and it repeats every day since. The shock, the denial that this is real. From the moment I wake up till the moment I go to bed I repeat to myself I cant believe this is my reality. His reality. Grieving the child I never had and to be honest I'm glad because look how special he's made my life.

The Pain and Guilt. This Constant heaviness on mine and my Husbands heart is enormous. It's like I can feel my heart breaking a little more each day. Knowing our time with him is so precious. Knowing as every day passes is that little bit closer to the life without him in it. Grieving the life I thought my children were meant to have, the life I was meant to have with them. I don't think that will ever get easier. The Guilt, we were told by our genetics team 'there was nothing we could've done'. Not knowing we were carriers to this faulty gene. Giving our babies a 1 in 4 chance of getting it, that being our Kye. I'd never blamed myself or Jack from the start. This was just the luck of the draw unfortunately and one we would have only found out if someone else in our family had this unfortunate scenario before we had kids. The Guilt I have is wishing I could take this away from him but I can't. The guilt of knowing Grace wont have me as the mother I once was and a shell of the person I am becoming. I will fight till the end to give them both the mother they deserve.

Quote by @lorelei.poetry

Then comes the anger and the bargaining. So Angry at the world and at the person who created these horrible disorders who affected little people with, their lives barely beginning. Angry as to why him, why my Special boy? Why our family? I was bargaining with anyone who was listening, wanting so badly to take the place of my little guy. I'd lived a life and he hadn't. Why was it fair that I did but he couldn't (sounds silly now). But he didn't think this was unfair. Kye doesn't know what's happening, he just thinks life's fabulous! Again that it is.

I've always been someone who is highly anxious and therefore I had a higher chance of developing PND (which I did with Kye). I was lucky to not have experienced it with Grace as I knew ways of coping to not feel that way I felt before. One being talking about it and not holding it in (for the most part). However waiting for the results and then getting the results. I'd never felt so low and alone in my life. The insomnia, the breathlessness, the constant fear of leaving the house, things apart of my everyday became a trigger. Anything could and would set me off. Like this one morning I was putting Kye's clothes away and I smelt a pair of his socks and I just lost it. Smelling him and his memories, all from a bloody (clean might I add) pair of socks! That's the thing you reflect on a lot and its hard not to. You reflect on the little moments and wishing they would just stop just to enjoy the little things once more, or to keep them at that age when things are innocent.

One thing we have done from day dot is connecting with as many family and friends even strangers to help raise awareness to Sanfilippo and other rare disorders alike, to just have that support network in place. We wanted to bring everyone in our circle to know they are important on this journey. Support is super important and we need this just as much as Kye does. We need to be able to talk about the hard stuff, so we don't bottle it in. Although this is hard and times as any part of grief, we slip away from that, becoming reclusive in not wanting to become a burden and quiet frankly sometime it gets too hard to talk to people with what we are dealing with when we are still learning what we are dealing with. Its only human figuring out that maybe we need to take our time to be fully ready (or just) to see others in our shoes as we've been told it can be quiet confronting.

We now have to reconstruct, take each day as it comes. Be easy on ourselves as this is our new 'normal', we are forever changing with a forever changing outcome. Nothing stays the same, we need to grow through what we go through. We have accepted the diagnosis. As a mother you just wants what's best for your children and now being able to see some way forward no matter how hard it is, needs 100% effort as we are Kye's and Graces voice. Its not about how hard it is for us its about finding a way through to do what Kye needs. Jack and I have accepted that a cure is unlikely to come in Kye's lifetime.

We hope that we are wrong but hope one day there will be for other children and their families. We don't use the word Hope with Kye. Its Smile. because he smiles everyday and we need to carry on, see the good in all things and just smile. With grief now being a massive part of me and my day to day life, I'm trying to find ways for me to cope. I need to look after me and my mental and physical well being. Finding an amazing Psychologist, who I'm hoping can give me tools to help navigate better through this and to be a more understanding partner and mother. Walking was my exercise, I loved it and hate that I haven't had the energy to do it. My body is feeling it physically and I can feel it mentally affecting me too. Hoping to try and get back into it slowly and start really putting myself first. Reading books about anything and everything that I'm gravitating too that might help me with this crazy change., one I'm currently reading is When Breath becomes air by Paul Kalanithi. Two others I cant wait to begin are the happiest man on earth by Eddie Jaku and Signs- The secret language of the universe by Laura Lynne Jackson.

Here comes the Rainbows. A quote from a special family friend Buck said " when you watch a beautiful rainbow and then it fades. You are not sorry it faded, you appreciate having seen it". Words that fill my heart with love. Kye and Grace are exactly that. My rainbow's. He is the purest thing. Kye is Brave. Strong, Smart, Empathetic and all things good! He loves the wiggles, trains, books and his beloved dog Punchy. Oh and can't forget his love for his sweet baby sister. Kye makes you see that even in the bad, you have to still see some light. It wont be easy. We are riding the waves of Grief and always will. But we have to give Kye the credit he deserves. His short life will be just as important, the message he is giving me is to live every day as its your last and don't ever think you don't matter. So many adventures planned, so much quality time with my babies and just enjoying my time with them. Because the time we have is short and we need to make every moment count. There will be plenty more rainbows in our life with our Kye and its just about finding the good in all this.

Even in the face of darkness can you find Humour in all things and we will...

Just smile for Kye xx.