When life hands you lemons go buy some tannerite and blow them up it and will rain lemonade….
There are so many times where I sit there as a parent and try to get a better understanding of my daughter.. I try to see the bigger picture always no matter what. But I also try to understand the medical point of view and of course I do not always agree with what I’m told about her… I know her and I’m there 24/7 they are not. Yes when the fever hits and things go south to them we run but on a behavioral side of things I do not always agree with their perspective…
I have been asked so many questions about her… so many.. maybe I will talk to you about that in a future post but for now here is how last weekend went for us and to be honest it was one of the nicest I’ve ever had with my sweet girl…
I did nothing this weekend, not going to lie it was a great choice. I even had a chance to binge watch tv since my hubby was gone mountain biking. Yes! it was pure victory. And to top it off I had some wonderful play time with miss McKinley… she actually played with me. Typically she motors around in her own little way humming to the beat of a song in her head.. she may bring me something to turn on and walk away… but her interactions with me are never like this….
This playtime we had together for me was beyond amazing, we played “run around the house” basically she runs from me and laughs… I read her a few books and we played with her toy picnic basket putting the fake food items back in… We then went outside and ran in the sprinkler together and came inside and had a dance off.
That 3 year old can dance let me tell you.. So thank you McKinley for a wonderful weekend … I had a blast and you are hands down a superb dancer with moves like Jaggar, Mommy loves you!!!
It’s moments like this that allow me to relax a little and feel a little more “normal” as a parent to a an autistic child.. she really does usually live in her own little magical realm. And when she invites me in I get to experience her magic and together we have so much fun. Those are the moments in life I live for as her mom… that kid has my whole heart.
I also know there will be future moments where I want to break and it will be a major struggle not with her but with them…. by them I mean those on the outside who look and ponder and judge. Those who have no clue what is going on but decide they want to speak about it..
To those people who think it’s OK to talk about others in the world who have is harder than you… go put yourself on time out seriously.. shame on you for even thinking you are better than that little kid with the headphones on who is struggling to talk. Shame on you for thinking “Why is that parent allowing their child to watch a show on that iPad while at a restaurant how horrible..”.. The horrible thing is you…Shame on you for waking up today “normal” and being a real ass to those who can’t do that.. some of those people can’t even tie their shoes but you can… Shame on you if you ever make my daughter question herself….
To those people who think they are perfect I have a dirty secret to tell you…. You are not so be humble..
Living in Oregon is top notch for us, yes we’ve lived here since the day we were born but with the love for the outdoors it works very well for us… this time of year however it’s plagued by fires… needless to say our reasoning for being inside with a list of house chores and naps was due to the smoke levels causing the air to be horrible. Having a child with major medical issues especially heart related to top off her others causes us to be on the list of those who hibernate during fire season.
We do have big plans upcoming and I sure hope they work out… Camping at a favorite lake in a yurt for labor day weekend, taking McKinley to Dovefest… she gets to hear Ryan Stevenson and the Newsboys live.. and going on another 18 mile bike ride… this mom bought padded bike shorts so I will survive this ride.
There are fun things all around but at time those fun things are nothing but a distant thought… we don’t always get to do the things we want since McKinley may not enjoy it or it’s just too hard… The saying it takes a village to raise a child i feel is often true when you have a child with needs unlike others. Over stimulation is huge for us and since she is now starting to show that some things can drain her energy we have to be careful on our choices and yes its hard folks.
It is hard on us and on her… when something isn’t easy on me and I get frustrated I know she feels it and gets upset too. I know that when she is over stimulated and cries out it’s hard on me because I try to search for “what” upset her.. she cant tell me right now she in non- verbal… so yes this game of guessing can drain us and it gets emotional and exhausting at times…
When I think about all those moments where life hands you lemons and you have to figure out WTF to do with them I think about her… I think about how life threw us a “curve ball” and handed us this new path when she came into the world 3 years ago and we didn’t cry about it, we took those lemons and knew what the crap to do with them but those lemons made us cry… they made us feel.
I hope this makes sense to you as it does to me.. I know there are going to be hard times with her and heck yes I write about it and talk about it all the time. I know there will be down right perfect days too like our weekend of playing together, we connected. I know that on our next hike out in the middle of no where even though there is no one else around to look at us like “what is wrong with that kid” I know that it will be hard on us when she gets upset, but I know it’s worth every moment.
So when and if life hands you lemons, don’t fear it.. don’t be the average joe and make lemonade…. make it rain and be amazing… Yes shit happens trust me I know.. And to remind you all I do have red hair and a temper… so I stomp my feet at life often….. But we are not in control here and I need to learn to relax and enjoy what is right in front of me…. My life…
Mommy and Daddy love you McKinley…. thank you for showing us a new way to live in this life….