Ok, I’m tired, I’m grumpy, I’m frustrated – and in need of a SpouseBUZZ vent!
Mother’s Day in the life of a ‘special needs’ mom is always interesting. Yesterday was no exception! I feel for special needs moms. They carry the weight of the world on their shoulders . I don’t consider myself worthy of this title anymore, as we’ve passed the chemo stage of life and are just ‘orthopedically challenged’ at this point. But it seems like there’s always something popping up – or in this case leaking out!
Migs comes in yesterday morning and says, "Hey, mom (oh, Happy Mother’s Day!) – I’m leaking!" Not everyday I get this kind of a howdy do! Turns out he woke up to find his bed soaked with lymphatic fluid leaking from his leg. Didn’t even know that legs could leak – no open wound, no coming through an old pin site, nothing – just a constant drip from his leg, like some sort of sick medical lymphatic water torture! (Where’s House when I need him?!?!?!) As luck would have it, nobody knew this could happen. Not the ER docs I spent Mother’s Day with…or the pediatrician I spent today with…or the Ortho surgeon I called in another state….or the Hem/Onc doc here in town who he’ll see tomorrow. So, just when you think you’ve seen every angle of this disease and it’s after effects – something new pops through!
What’s scary is the pediatrician didn’t know what specialty to refer us to for a lymphatic issue (FYI – Hematology). Guess that I should interject that I really liked her, she was personable and very concerned for Migs’ well being. She’s sending him forward to another doc when the General Surgeon wanted to just tell Migs to deal with it, that he’d have to have a leaky thigh for the rest of his life – over my dead body! So, we are hiking his leg up and applying and changing compression packs every few hours – keeping the pain at bay with narcotics (what part of THIS did the general surgeon think he was going to do for the rest of his life?!?!?!?!?!?!?!?!) and keeping him out of school to avoid a possible infection – esp. given that he’s having another surgery in four weeks!
I’m spending my ‘free time’ today trying to keep up with work and researching what could possibly cause a leaky leg…..Jeepers, it doesn’t get much weirder than that! The thing about having a kid with medical issues (OK, he’s 14, almost 15, not much of a ‘kid’), is that you can never relax. You’re never off the hook! I suppose it must stink for him too! Just when life is sorta going normal – splooosh, your leg starts leaking!
I’m really lucky to have good friends in the area – thank you guys for being there for me today and understanding my mental lapses. I wish they had a ‘good friends’ day! If you know a special needs mom – make her brownies/peanut butter cookies one day, just because – seriously, cookies are so good for the soul. Let her vent (thank you, work gals, Kim and Mike!) – and understand that she may not always be able to bring her ‘A’ game to a conversation when her mind is trying to sift through all the possibilities of what could be wrong, what she’s not thinking about, what she’s not doing.
So, for those of you who ARE special needs moms, how about giving some time tested and true relaxation/coping hints?!?!?! What techniques do you find that work best? What are the best internet sites for medical answers? What keeps you sane and helps you refrain from taking out your frustration on every medical personnel that you encounter!?!?!?!?!?!?!!?
How do you answer insane questions like, "What do you mean it’s leaking? Can you describe the leak? I just don’t understand what you’re saying." Seriously, how many ways you describe something leaking? He’s got fluid coming out the back of his leg – no wound, just a constant drip – what would you call that other than he’s sprung a leak?!?!?!?!?
Ahhhh, they keep my sense of humor on it’s toes!