Lock down hit just at the beginning of Kades last year of high school. Education being important to him, I never will forget the words, “mum I don’t want to be forgotten about”, they still rang loudly in my mind. It was happening all over again, louder than before, they played on. For the last five years we had muddled through. Lockdown shone a bright light on the failings of the education system.

There are forms to be filled, documents to be signed, it is all pen pushing and means nothing. As long as they are hitting their targets no one cares. You will meet the few who do, they are diamonds in the rough and they will positively influence your child’s life. They will teach them that some people do care. Not because they have to, but because they want to.

Kade goes from strength to strength, he is learning to drive and will be starting college in September to do an HNC in accounting. The college have an “inclusion team” who specify in supporting students who may have additional needs no matter what they may be.

For us life has settled nicely. Eventually after almost 6 years of fighting and finding ways to survive, we are on a level. Kade has his PIP sorted for the next 5 years. Jay my youngest son has discovered a new passion for motorbikes, I am learning how to say no to people who suck the life out of me and look after my self first.

For me the most important message to share with parents of chronicically ill children is to make time for you and not feel guilty about it. I punished my self for years. How can I smile when my child is in pain. The answer is, you are allowed, you’re allowed to be happy. It is nothing to feel ashamed or guilty about. If you are happy then your children will follow.

Every day that you wake up is a new beginning. You may not feel it right now if you are lost in the turmoil of the early days, but please believe me it will come.

Listen to what your gut is telling you and follow it. Listen to that instinct you have even when it is dampened by others.

Lost for what feels like forever, I watch my son come back. Emotions have been something absent for a long long time. I over hear Kade talking to his Aunty about Onion (Kade’s bulldog who his training to become his assistance dog) She asked him “how do you feel about her?” and he simply replied “I love her”