apparently i need to clarify that i AM thankful & blessed to have jocelyn in my life. it's amazing how some people become so critical of our words or feelings even though they themselves haven't walked even one day in my shoes. i guess i should begin by explaining why i feel this blog is even necessary...well, i posted on my FB wall yesterday a little update that went like this:
"i HATE Angelman Syndrome :( 4 all of you who will be enjoying this weekend w/ your family by going on vacation, or camping, heading out for a fun day at the lake, baseball tournaments or just about any kind of family fun...well, please have a silent moment 4 me, as i will be stuck in this stupid house as ALWAYS!! not sure why God chose me to deal w/ this, but i keep trusting that He has a plan for me & jocelyn..."
ok, maybe that was a little much...but last i checked it is MY Facebook page & i'm entitled to post whatever i may feel like. and at that point, that is EXACTLY how i was feeling. & trust me...if any of you had to personally deal w/ Angelman Syndrome (AS) the way i do...well, you would HATE it as well. let me tell you why i even posted that little update yesterday: well, we decided to go out to Short Mountain Cove where my dad was camped out. we were only going to be there for a little bit, just enough time to get out of the house for a change. well, it's just so stinking hot in june in oklahoma, so poor little jocelyn can't handle it (which i knew would happen, but john insisted we all go, trying to include joce in everything...) needless to say, she got SICK...mega sick, puking like crazy from all the heat. just another reminder we can't do all the normal things that families enjoy together. we had to leave the minute we got there...frustrated to say the least. that's why i felt like i did yesterday, everytime we try to do something as a family, stupid Angelman Syndrome ruins it for us!!!
just because i HATE her disorder, doesn't mean i don't love jocelyn or feel blessed to have her in my life. i just feel more comfortable w/ her in our little haven...our own home. for those of you who take it upon yourself to so quickly judge me...let me ask you this...do you have to make EXTREME changes to your life, do you have to give up family outings because your child absolutely cannot function in the heat or gets too overwhelmed in crowds? do you have to avoid restuarants because your child is very loud, making strange noises & distracting to the point you get MANY MANY stares from the others there? do you have to avoid hiking trips because your child is in a wheelchair which makes hiking trips dang near impossible? do you avoid family vacations because your child cannot sleep anywhere but their own bed? do you still have to diaper & dress any of your children that are age 7 or older? do you have a child age 7 or older who doesn't walk or talk at all? have you given up your career so that you can take your child to numerous therapy appointments & see all kinds of specialists in order to care for your child's disorder? have you watched your child lie in a hospital bed having seizure after seizure & there's nothing you can do about it? i can think of tons of other questions to ask you as well, but it's really not worth it...i mean, i know your answer will always be no.
so, maybe you shouldn't be so quick to judge my attitude regarding AS. i'm so beyond entitled...i live this complicated life on a daily basis, have been for the past 7+ years...cut me some slack. & don't ever assume i don't love my daughter or feel blessed to have her. i am tremendously blessed to share this journey w/ jocelyn, i'm just saying it's a tough road & sometimes i long for normalcy...the normalcy you & your family experience.
(for all my fellow SPECIAL NEEDS moms, please know that i admire all that you do. i know that you have endured the same as i have & for many of you, you have endured even more...i want to thank each & every one of you for being there w/ me on this journey & giving me all the support & encouragement you have shared w/ me...i will do the same for you as well!!! LOVE YOU GUYS!!)
