Thursday, June 24, 2010

Non-Medical Update

I'm just so proud of my boy Kaden. I wanted to post about some fun things he is doing right now for a change. He is currently 19months old and weights 24lbs. He is a very adventurous boy that loves to try anything and loves getting into mischief. I follow him around all day cleaning messes and keeping him out of things he shouldn't be into. He is also a sweet, kind, and flirty boy. He will walk up to a stranger, wave high, and ask for food, high fives, anything they have to offer. He is very smart! He can count to two, and knows a few body parts. Hair, eyes, nose, ears, hands, tummy, and mouth to list them out. He is very talkative and knows so many words I can't list or count them. He newest word is "na nu", love you. He is very polite and says thank you after you give him something and then says two and puts his other hand out.

He is a little boy that keeps me on my toes and drives me crazy some days, but can melt my heart with his smile and laugh. He is a cuddle bug at the end of the day and gives me kisses to "apologize" for all the rules he broke. I love being a mom to boys, there is nothing better!!

Monday, June 14, 2010

down and out

Been feeling a bit down and out lately. Nothing has changed recently, but I'm just feeling out of control. (FYI, I love to control all when it involves my family!!) I'm still struggling with the idea that my son has a disorder that he can't be cured of. I'm still crying over it when I'm alone and start thinking about it. I just feel so responsible, and I'm the only one dealing/treating my son.

I take on everything to control Kaden's HCU so no one else has to deal with it or even think about it, even my husband. I have all Kaden's foods in a special sections around the house with all the protein values written in charts, I order all medications, I take Kaden for all his blood draws and doctor appointments, I fill in all the daily food logs and calculate values. For me, If I need a protein value, I have to google and do a bit of research. For my husband and everyone else, I'm the walking methionine/protein value calculator and I HAVE to know off the top of my head if Kaden can eat any food that is put in front of him and how much. If I don't know, then Kaden could be missing out on a mealtime, and that makes me feel guilty. I feel like I HAVE to know how to make an alternative yet similar meal for Kaden at every mealtime. I want this for my son so he never feels left out but I'm beginning to think this is an unrealistic goal. I want to say I can cook for him everyday but I just can't. Plus, I have this whole worry of how is he going to fit in once he is eating "out of the house" on his own. When he sits down to eat with school friends, he will HAVE to eat differently. Am I setting him up for failure but protecting him and feeding him what always looks similar to what the family is eating? Should I make him eat different foods or deny him something while the rest of the family eats it? Isn't that mean?? Its that preparing him for the world? I don't know!!!......

I know these up and downs are just a part of motherhood but with Kaden I feel so much more responsible. I'm the one that is responsible for keeping his health perfect so he can go to do great things. If I slack, then in the long run, he could ultimately pay for it with his health. This is the burden I carry everyday and I know I need to let some of it go but I can't. If I let it go, who will pick it up? He is my little angel and I'm so scared of letting him down.