Well here we go…
Wednesday I will take a day off of from work to actually spend the whole day with this sweet girl who rocks my world. It may not be the sweetest of days for her though… We will start with a urine test and blood draw and then hit up OT therapy. After all that fingers crossed she will take a nap and then off we go to the park to swing our worries away. That is the plan at least.
I sure do hope she will do well with getting her blood work done, the last time we went to do this 2 years ago the person couldn’t find her vein. It was a mom moment where you want to yell and ask them how they got the job they have if they can’t complete it… but you don’t instead you grind your teeth down and leave with a migraine from down under after you tortured yourself listening to your child in pain… Life is crazy right?!?!
Why can’t we all be Vanna White and not age and smile all the time lol. I’m sure she has life moments too but she dresses amazing and always smiles so props to you Vanna. And my daughter loves to watch Wheel of Fortune so I have a soft spot for the show… part of me hopes that the tests will find something and part hopes it doesn’t, the possibilities are endless and that alone is scary. I pray it’s nothing horrible and if something is found it’s a syndrome we can take on and live with and handle just like we do already. Bring it on life…. We got this I think…
I want her to have the fullest and brightest life possible. I want her to learn how to bring her voice to life forming words and I pray her thought process allows her to understand just simple things. I would faint if she just waved at me. All I want is for her to thrive in this life she has now even if it’s a little more than she already does… that would be huge and I would be even more proud of her than I currently am. Trust me I’m super proud of my daughter… each day she is happy and runs around and does all the amazing little things that she does… I just want for her to be able to have some sense of her own awareness and even know that when she is hungry to ask for food, even if it’s bringing me a card with a picture of food on it… right now there are a lot of things that she needs 100% assistance with and that is fine but someday I hope she can maybe do a few more things on her own.
My husband is about to turn 40 (going on 15) and he has decided to continue in his love for going down a mountain side full force at raging fast speeds on 2 wheels. Yes that man is insane in all the best ways. I applaud him and he really revives my soul on days where no one else can. However it’s darn scary to have a special needs kid who loves her Daddy and then there he goes competing in races and well the Danger is there Will Robinson lol. He has another race coming up 2 days after his 40th birthday in May. He took 2nd place last year in his age group and now he will be in the old guy league as he calls it, pray for that man. We need him and McKinley loves him more than anyone. They had it rough in the beginning… he is a fixer like most men and wanted to fix what he couldn’t, each day he grows to understand her a little more and their bond is magical. Both the girls love him… must be the way the world works with dads and daughters, I know I feel the same about my dad… I do not know what I would do without him.
Everyone stresses in life over things… it could be money (I hear ya there).. it could be health (hear ya there too)… it could be that your clothes don’t fit like they should anymore or your face broke out or the person next to you wants to cut you off while driving, it could be anything even the little things that can stress you out… I hear ya, I feel it too. I think starting this blog was my way to relieve a huge portion of my struggles with stress. I generally thrive in high stress environments and try to kick ass and repeat so to say, but c’mon I am only human after all… and life is full of unpredictable situations.
I tend to do my best to get lost in shows on tv and not think, sometimes I end up staying up too late though and obviously I should get all the sleep I can being that I have to chase this little girl around all the time… but it’s hard by the end of the day after I get home from work I make dinner and do the family routine and then there I am, the tv is mine. My husband has set the remote down and I can control it, lol. Big accomplishment for the evening in my book. My nights are usually spent on my couch with McKinley who falls asleep in my lap, my dog right next to me, and the cat who is larger than her and the dog… crowded and comfy all at the same time.
We have some fun plans coming up that I look forward to. Of course being in Oregon once this cold weather passes we plan to take full advantage of the outdoor life and I will post those adventures later. We also plan to do a few cabin trips. I rented some cabins instead of tent camping this year. Our goal someday is to buy a trailer and live the life. We love nature, it’s the best place to be.. and she loves it too. Going tent camping with her is so hard though, too much to bring and with no fear or understanding of certain things it can be the biggest stressful workout for any person… She wants to jump in the fire and play or sit down and eat the dirt and pine needles. Too many things that are scary bottom line it’s too hard now that she is so much faster.
We decided that going to a cabin was a better idea now and it’s more secure keeping her safer. Also there is a locking door and for me with her this allows an actual relaxing adventure, we want her to experience life in the best ways possible but we want her to be safe so we will do our best to do this and have family time. The fact that she doesn’t speak is huge too.. she is constantly on the move and with her wandering cabin life is the best choice when we venture out. I think that Savannah likes that better anyways, she is over the dirty days of tent camping she tells us. She is growing up so fast! She is such a wonderful sister and beautiful young girl.
I hope that while you read my blog you are inspired to do something good for you…. maybe even a random act of kindness … I write to tell about us and our adventures with McKinley and how she has changed our life. Honestly I know we would live to the fullest no matter what but she gives us a whole new reason to do things better… She makes us understand the meaning of being the best we can be… And by no means are we perfect or do we think we are… we jack things up daily in my family… but trying to do right is better than doing wrong… giving your all to make things better for you and those around you when we live in such a crazy world is a great start…
She makes my life better even on the hardest of days. I still struggle daily with the same thing…Hoping I can live forever and protect her… I think any parent wishes for this. I made this blog to help myself to in many ways this is better than driving my husband or friends crazy with “McKinley talk” lol. We have a good life, the reason why is because we have life. So everyday no matter how I feel or what the outcome I try to be thankful for the fact that I woke up today and if I can start each day feeling good about this …then I can take on this life that has become my everyday….