The month of November.

To most people November is just a normal, typical nearing the end of the year month. With the occasional birthday, starting to organise Christmas and anticipating what the next year holds. For me it holds a lot of mixed feelings, very bitter sweet. Things i'm having to work hard on to get through, as it's something that i'm going to have to learn to cope with no matter what because it now will always be apart of me.

The month of November holds 3 massive, life altering in positive and in negative ways. It's funny because things always come in threes.

The first being the day Jack and I got married. 25th November 2017. This day is so special. I still look back and think of all the fond memories of the day and how much love there was. It was the day we became our very own family unit. A family we have worked very hard for and to keep more so in the last 12 months. It’ll be 5 years married and we’ve been together 11 nearing 12. We’ve gone through a lot but nothing like what we are going through. Marriage is about working together as a team. Of course those two people are completely different in many ways with connecting in their hopes and dreams of what their lives together will look like. Connecting with the same family values or wanting to make new ones. I like to think Jack and I work well and of course we have our arguments and not agreeing entirely on things ( like him buying a leg extension machine, thinking it’ll fit in our home gym garage and me telling him otherwise… I was right) .

These last 12 months I can say we’ve both changed in ways that we probably don’t like all that much. For me I’m forever changed and am a much angrier, less patient person. I don’t deal with life’s crap very well. I’m a lousy friend. I try and be there for the people who have shown not only me love and support in ways others haven’t. They are people I can’t live without and yet I may not talk to them every day and vice versa, I know when the time came they would be there. To those beautiful people, I love you!

The second. The most beautiful, glorious days of our lives. The one being our beautiful Kye entered this world. He changed me from the minute I saw him. I loved him. We were both figuring each other out. He was our first, he was the most scrumptious little thing and made our world turn! Life felt bright, my purpose felt strong. Everyone does this, they plan their lives out. They start thinking who is this person going to be. You starting thinking who will you be? It’s an amazing/daunting experience but one I’m glad I got to experience. To feel normal before it wasn’t. Before the planning stage of the next chapter of our lives started and the hard stuff came. It’s crazy how life isn’t mapped out for anyone, no one knows what’s around the corner for them or for their loved ones.

Things just happen and there doesn’t need to be a reason for any of it. For the good and the bad, things unfortunately in our case happen and changed our outlook on life, our family and what we wanted forever. Kye was literally the son I always dreamed of and more. He is my Ferdinand the bull. Kye is strong, brave and smart and so so nurturing. He is cheeky and has the best attitude to all things in life. He is forever teaching me and will forever. His fourth birthday was hard. It was hard to be excited. Because it’s no longer celebrating him getting older but celebrating that he is still here and can still do all the things he can do. Although it felt strange we made his birthday the best day we could, doing all the things he loves doing. Because it wasn’t about how we were feeling it was about making him feel super special and loved. Making core memories as a family of four. It still feels like yesterday we welcomed him into our lives and fast forward to now him being he cheeky four year old he is.

Third… the third is still new, still raw and still something I try and wrap my head around every single day. It’s like waking up from a nightmare and realising it’s your reality. The 29th of November , the day we found out that our lively, strong, cheeky, smart, loving little boy has a terminal illness, Sanfilippo syndrome. Being told that there is no cure. That we just need to love him and spend as much time with him as we can. He will lose his abilities to walk, talk, eat and eventually take his life. The life expectancy is short and we were told the words “pre-teen”. Your world just spins but everything in front of you is in slow motion. You think about everything those words are taking away from the family you wanted. What the life your child SHOULD have had. From seeing our very capable young boy to then being told he will lose all of it. He won’t be able to run into my arms. He won’t be able to eat his favourite hot chips, he won’t be able to say his sisters name. My heart is shattered forever and I don’t think it’ll ever be fixed. Because it won’t be the same. The pain in unbearable at times. The thoughts literally come over the smallest of triggers that don’t make any sense as to why.

For me one being the month of November. Anniversaries aren’t the same, birthdays aren’t the same, holiday periods feel strange, babies being born feel tainted with jealousy and wishing I could go back and enjoy the little moments more. It’s knowing Kye and Grace won’t be able to grow up together and have that annoying bond that siblings have. As the date nears, I find my body is telling me it knows what’s coming. It’s bracing itself for all I will be feeling, reliving it even though I relive it every day. I’m counting down the days on my calendar even though it’s not in black marker on my fridge calendar it’s one I have scratched into my forehead never to forget. Your world feels over. We often say to each other Jack and I, how are we still here, how are we getting through each day, each week, each appointment knowing it’s not making his condition go away it’s just trying to keep all his abilities for as long as possible. How do we cope with being completely exhausted from everything? How?

Because we just do. Even on the days it’s really all to much, we still get through it. We have no choice but to keep going. Keep trying for our family. It may not look like how we imagined it would be but it’s our life, our sons life and he doesn’t know any different and won’t ever. Our daughter Grace deserves to see how hard we tried for her. To show her strength and courage. To show her true love. We put on a brave face every day and sometimes you actually believe life is great! And it’s because it is. I said this to my husband the other day that it’s funny how normal everything feels. Kye’s doing amazing at all therapies and at daycare. Grace is growing and becoming a little person. But then you stop and actually reflect that life isn’t normal and things will change and unfortunately as much as we have a baseline of when things could happen. The timeline of it actually happening is still a big unknown. I just wish we could freeze time or freeze him to keep him just the way he is. You look at our busy week schedule and it makes total sense as to why I feel exhausted by the end of it. Its full of therapies the occasional Genetics appointment, the occasional birthday party and there is literally no room for much, on top of having restless nights due to Kye waking up and of course the occasional wake up from Grace, which at the moment has been a lot (probably can sense how we are feeling).

We try and keep at least four days of no appointments just so we can have some normalcy in our lives. Yes these therapies are helping and we have noticed some massive changes in Kye. It still doesn't fix what our boys little body is going through. He won't keep up these skills forever, unless a clinical trial comes along even better a cure. Our Normal is so different to a lot of other families even other Sanfilippo Families. It can be quiet isolating but forever thankful to have found some beautiful families that have given me the strength. Because the One year anniversary is nearing, it's crazy to reflect on how far we have come. It honestly doesn't feel like it's been a year. it feels longer and I again wish time would slow down. These last couple of months we've had to get used to our lives revolving around so much. Kye needs surgeries, his second round of Grommets as well as his adenoids and tonsils, because due to his condition his airways are much narrower. It's looking like it'll happen in the new year. We are waiting to see a sleep and behavioural team to figure out our next steps with his sleep and medication as we are nearly on the highest dose of melatonin, we all need to get better sleep. Cardiology appointments are again most likely on the cards for next year and whatever other medical things we will need to do as they arise. It's a lot.

So the month of November holds a lot of feelings for our family. We try and be positive about most things. But we are only Human and I feel the First year was always going to be hard. Its Hard because we are now figuring everything out. Trying to advocate for our terminally ill child. Trying to navigate our new relationships and especially our marriage. We have to remember what we are fighting for, what we are doing this for and that is for OUR FAMILY. We do everything to make memories that we can cherish forever. I can't say this enough, take the photos, be in the photos, pay for photos. Go on small family Holidays. Go on day trips to places that make your child happiest. Because you never know what is around the corner. You never know what life has install for you. Cherish the people in your life. Life is full of unknowns, life isn't meant to be comfortable. Whatever is holding you back, just do it anyway, life is too short to be stagnant. I hope we can overcome all these obstacles and the Month of November can just be like any other month. I want to enjoy life to the fullest, with its ups and its downs.

Just #smileforkye