Another early morning, when you have a chronically ill child you do not truely sleep. When you wake its like waking from a nightmare however there is not that relief, in that split second where you would have that realisation that it was only a dream, it is the opposite. The reality hits you again, boom like a train. Thoughts flood your brain. Is this it? What can I do next? Where do we go from here? The visions of your child’s future play over and over in your head. There is no rest and you begin again.
Kades treatment was cancelled because of the snow. I know we can make it to 5 weeks possibly with out any major problems. It’s been 4 weeks and 3 days. That gives us 4 more days.
As a mother you can see your child more clearly than anyone else in the world. You see the smallest change in them. I can see he is ready ,he needs his treatment. Especially since that recent set back he had. That head tic he did earlier in the day was more prominent it had almost become unnoticeable. The anger and frustration is building I can only hope to control it with ibuprofen.
Dear mother of a chronically sick child who is reading this right now. I want you to know, I believe you, every single thing you say, know I will never turn to you and dismiss what is so blatantly obvious to you. It is hard enough not to let that doubt creep in, it has a way of slipping inside your brain and consuming everything you know to be true. Not helped by the non believers, they dismiss your fears has habits or brush them off using words like maybe or that’s normal. Dear non believer, I can assure you we know. We just know. When a child has brain inflamation a mother can spot it at 100 paces. Do not doubt for a second that they are right. We are tuned in to our children like nobody else and our thoughts on what is going on with our kids is real. You cannot see them for half an hour and even begin to have the faintest idea of how they were or should be. I beg of you please just listen and trust us. We spend 365 days a year getting to know every tiny detail of this human being. We are here because we care and want what is best for them.
So, Dear mother of a chronically sick child please remember to believe in your self and know you are right. You have got this, keep fighting these battles so that others in the future will not have to. Keep pushing on and change the future, it is the only way.
Edited to remind my self, Kade recieved his ivig on the 8th of March. He began experiencing chest pains on the 7th of March. 5 weeks post ivig.