Today started out pretty rough. No idea what came over me but somewhere between the time I woke up and 11 o clock. I went into "breakdown mode". I havent been there in awhile. Yes, even supermom has breakdowns. I'm really over Miss Audry being sick. The secretions got the best of me to say the least. The looks I get when I take my daughter in for a "runny nose, and cough". If it was Emery I'd tell her to drink water and drive on. For those of you who don't know, let me explain. SMA has a nasty way of taking your every day "cold" and turning it into your worse nightmare. The kids not being able to cough up the mucous it sits there creating bacteria. It also has a tendency to move rather quickly to longs without intervention. We had an earache turn pnemonia in less than 24 hrs. [prior to dx] Now that we have all this fancy equitment aka torture machines, boog hates, we can for the most part keep her well. By well I mean out of the hospital. When "colds" are prolonged I tend to get a little nuts. Today was that day. I know that I can't change her SMA it's here and its not going anywhere, however I think I'm allowed to hate it. Audry is a blessing, she is amazing, her SMA can lick my toe. In all reality most days are "normal" I may forget her age because she didnt hit her typical milestones, but she reminds me with her cognitive abilities. The girl is wicked smart. Audry being sick gets to me. Really hoping this blows over soon. While work is supportive I fear they may not be so supportive after awhile. I think staying home helps stir the pot. I'm a homebody but I need adult conversation. I start to go cookoo for cocoa puffs if I just hang around my girls.
Audry of course did amazing today. A midst this awful cold, coughing, phlem nastiness. She is still smiling and her oxygen saturation is that of a normal healthy kiddo. She had a low grade temp and her heart rate was in the 120s. She smiled, she laughed, she slept. She even gave her emotional mommy some hugs. [but no kisses] All in all when I started my day, I was on a downward path of destruction. I'm feeling alot better, more hopeful, but dog tired from the emotions today. [being depressed=exhausting in case you didn't know.] Tomorrow is a new day. Always thank God for the bad days because at least we woke up, right? ;)
"Embrace The Suck"
Kayla, i love your blog this is awesome i have one too....let me see if i can get the link. http://redwings25fan.blogspot.com/?zx=b0e3282ca7a64664
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Kayla, I know our situations are different in many ways. Audry is your sweet baby girl and Krys is my partner and doesnt require as much care as Audry and their illnesses are different. But from the caretaker position I know it sucks and I know all about those bad days. There are days that for some reason her illness hits me and I dont know why but all i can do is cry and I wanna throw things and I just get so angry because I hate MS. I hate MS with everything in me but I love Krys and I wouldnt change having her in my life just as you wouldnt change having Audry. I have had many days like you had yesterday. Especially when krys is sick or hurting real bad. I get so tired of seeing her in pain and watching her fall down and seeing her so sick. Her immune system is pretty much nonexistent and everything someone who comes close to her has she gets. It breaks my heart to see you and Audry go through this. She is so young...I used to think Krys was too young to be so sick but then I think about all the little ones that are so sick and think that its not so bad... at least shes 26...but all in all it still sucks cause it robs so much from us. I love you girl and I love reading your blog. Just remember you are not alone when you have these days...everybody who is a caretaker for someone they love has these days..I'll be praying that audry gets to feeling better soon, for your strength, and for a cure!!
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