"Surviving not Thriving."

These last few weeks have been a mental drainer. With everything going on in the world it's hard to not think what we are going through as insignificant. There is so much sadness in the world right now, never in my lifetime would I think I would see a war like what we are seeing in the Ukraine but never in my lifetime did I think I would be watching my child die. We are a small minority going through something tragic. Our world is changed forever. What we are going through is pretty effing significant to me and I can't not see it as life altering, life shattering. Writing this blog has been therapeutic and although all I seem to be writing about is somewhat depressing and i've thought about writing something uplifting and positive. I have to remind myself that simply isn't possible at the moment when this is my life, my family's life and I feel I have something to say and people might be able to relate to it in some way or another. Our story of accepting that we are trying to push through a massive obstacle and accepting that this is the life we have been given and that life can be hard and painful.

Coming to terms with the fact that Kye has Sanfilippo and now seeing all the little bits that put the Kye Puzzle together is a hard pill to swallow. Realising the life and routines we had are now changed massively with so many hospital/therapy appointments every week it's been a massive eye opener and to be honest very overwhelming and financially draining. Thankfully we have gotten funding although it's nowhere near enough it's a start and hopefully it helps, which it is with Jack being the sole breadwinner. 3 days a week we have two things a day going from Monday- Wednesday, from school and swimming to speech and OT and physiotherapy on top of appointments we get occurring with our Gp, Paediatrician and Genetics team. Cannot forget about our own Psychologist appointments which means that Jack has to take time off or finish work early to be home to take him or be home to sit on zoom call trying to talk about what we've been trying to deal with while looking after two children that are awake screaming and yelling with excitement and getting into things they are definitely not allowed to be in i.e.. the dogs water bowl Grace is NOT a splash pad! . Covid has made a massive difference in our experiences and not in a good way. Trying to also squeeze in social events, adventures for the kids and trying to be supportive with friends and be loving partners to each other the other four days of the week. It's exhausting.

We are literally Surviving and not thriving, our heads barely above water. if we don't laugh we will cry and to be honest that already is quite a lot! Its been the last couple of weeks we have suffered massively in the sleep department, literally only having a couple hours of sleep and our days starting at 1.30am-3am and has made certain moments in our lives quite triggering. The lack of solid sleep is catching up and I can count two sleeps where I haven't had to wake to children but have still woken up feeling completely exhausted and those being nights being when we have stayed away without the kids. For two weeks we had colds from both the kids to then getting hit by Gastro (that was shitty ha ha) to put it simply we are not coping in the Hardman House hold. Kye does not understand what is happening to him and we are really only starting to grasp what it is ourselves. A lot has changed in our lives more so for Kye and I think to some degree that is part of what's happening. He's trying to process it all, to the level he can understand. Although, the next stage in the progression of his disorder was Sleep problems and hyperactivity and like I said I think we are in the thick of it. We have tried everything you can think of with helping him get back to sleep. Co sleeping... nope, sitting with Kye in the room... worked for a bit but not anymore and all the other tricks you can think of. It doesn't help that the only person Kye wants to do most of this is Jack. Who when Kye wakes at 3am and wants to watch tv, he does just that and then goes to work. It's like we have a new born baby all over again and again we are starting to feel the effects taking its toll on us, especially with Grace still waking up once a night sometimes, so when we are trying to go back to sleep I keep thinking Grace will wake soon and then I can't sleep. It's a never ending cycle of the same things and to be honest I'm literally running on empty.

With the early mornings and the hectic schedule. I'm starting to fall apart. I'm no longer patient. I've turned into a mother I hate because I don't want to snap at the kids when they don't understand why. I feel like such a failure. Why can I not fix this? why does it have to be so difficult? I'm not thinking rationally and I'm definitely not being the mother/partner they deserve. I hate Sanfilippo . Its ruining so much for my family and its taking so much control. I hate the fact that its destroying something Jack and I have tried to create. A beautiful family that just want more time. I hate how constant Jack and I are bickering over the most minor issues like who actually cares?! I hate how its ruining my marriage. I hate how much Sanfilippo has taken over our lives and schedules and how much we are expected to be ok with. But are we ok? No we are not. So what can we do about this then? Firstly we are getting on top of the sleeplessness. talking to our Gp and getting him on melatonin to start off and see how that goes. In the next couple of weeks we'll see the genetics team and see what we can do etc. We just want our boy sleeping and not dread the nights.

Talking to our psychologist the other day, again might I add she is bloody brilliant. I was addressing my worries and concerns and they were soon put at ease and that it's ok to feel how I feel. That maybe we need to lower our expectations on what we are capable of doing. that we don't have to have everything we are told is in the best interest for Kye. That its ok to feel overwhelmed by it all, we know Kye better than any doctor or therapist. We are in control and know what's best for him and we know when when we need to take a step back and reevaluate, so to allow that to transpire, we as his parents know his limits. we don't have to accept and expect that we can do everything and we can say no and not do weekly appointments if we aren't coping mentally. Its takes a lot out on us. We as parents need to be good mentally, to be 100% in looking after Kye and Grace's needs, to be the best version of ourselves. So when we aren't coping how can we expect the kids to be. If we aren't 100% how can we think the kids will be, they are very cluey. They need to feel safe and secure.

The last thing she wanted us to understand we need to Own Our Own Shit. Understand that when Jack or I are reactive or angry that it isn't directly towards each other and the thing we are reacting/bickering about especially when we have had a shitty night or day. Its something bigger than the both of us and its how we are dealing with the day or our emotions. We need to acknowledge our shit and let each other feel it and give each other space or give each other a phrase to say ok you need 5 minutes to regroup, instead of reacting and making it into a bigger problem than it is that he needs to let it out and vice versa. We are a team and need each other, something we both agree we need to give a red hot crack.

We accept that we are going to continue to face some really brutal obstacles but we are strong and will push through them. Like in the beginning of the movie Up. Its all about perspective. life can be hard and painful but we will get through it by accepting each and everything that is thrown in front of us, we will push through them to be giving Kye and Grace a loving and fulfilled life. To accept that we need to know our limits. Accept that things will be overwhelming and we can take a step back. One way or another we will push through. We will always...

#Smile for Kye.