Things I thought I never had to do as a parent

Things I thought I never had to do as a parent

When I first became a mom I thought about the conversation I would have with my kid. I dreamt about telling some of the crazy stories from my own childhood minus a part here and there. I dreamt of happy and healthy children, who would have amazing careers and create their own little families. What I didn’t envision is that one of my kids would be ill and that he would eventually be able to tell his own amazing yet scary almost unbelievable story of going undiagnosed for 4 years and three transplants later. And yet in all those 22 years of parenting and 11 years of being a special needs kind of mom, I never thought I would have the conversation about taking too much…

With the good, there comes struggle

With the good, there comes struggle

Summer Camp has been an amazing experience from a mother’s point a view – from a counselors point of view and well from Lennon’s point of view. He has inspired me every day pushing through his fears. As it stands with all things there are also some challenges and I see his social delays – so significantly by 2 years. Now it does not face him one-bit mind you – he is who he is and he’s so totally cool with that (me too by the way). And yet I can’t help see that he is unable to connect with kids his age, that he has meltdowns because his feelings got hurt and he can’t manage them, or lunch is not looking good at all….

The annual IEP

The annual IEP

  If you have had to have an IEP meeting.. or have to have them regularly as we do – you may feel apprehension about going because you know the only reason the IEP is needed is due to the fact that your child is struggling. I find myself often noting the negative thoughts surrounding an IEP or the struggles my kid is experiencing because he missed 3 years of school because he has suffered brain damage due to high levels of ammonia in his system. I struggle with the notion that he may always be behind.. but then… I go to his IEP meeting and I hear about ALL of this progress my kid has been making and while there is still SO much…

Sometimes the memories are not old enough

Sometimes the memories are not old enough

I think at some point we are supposed to be at ease and stop with the BIG worries and just continue with the little worries that come with having a kid who has received a few livers in his lifetime. As I was helping Lennon in the shower I couldn’t help but notice his veins that are still so darn noticeable. I was holding my breath for a moment wondering if they remained the same as if they have changed and I was upset with myself for not knowing the answer to the question. It made me look at his belly to see if it is more extended or if it’s normal – well normal for him. I questioned myself if I was missing anything…