And the horse they rode in on.

We throw the term “quality of life” around a lot. But what does it mean?

I’ll tell you. And if you don’t agree, come stay at my house for a little while. It will convince you I’m right.

Quality of life is finding joy and purpose in the ordinary. It’s waking up every day excited to be alive. Ready to do what you love. Feeling purpose. Feeling content.

It’s feeding your passion. Even if you are still looking for it.

It’s finding happiness in the people that surround you. It’s different for every person, but we all have the potential to have a beautiful quality of life.

Sometimes we may have trouble feeling happy, and enjoying life. It may take something extraordinary to give us a little push in the right direction.

That’s where Grant comes in. He has much to teach us about this. He has found his many passions, and he wakes up every morning excited for the day. When he discovered art at age 4, he found his passion and reason for living, and scotch taped it all over his beautiful little soul.

Our respite provider, James, says it is impossible to not be happy around Grant. He literally squeals with happiness sometimes. I love that sound. It is like a giggle and a squeal that bubbles up from his precious little heart. He is so alive and present. He just is.

But some may not understand that he does, in fact, have an amazing quality of life. They may feel because he is “mildly to moderately mentally handicapped” that he isn’t capable of that.

They would be wrong.

It is just a stupid label, in a world full of stupid labels. Like, for example, “retarded.”

This blog post is my emotional outpouring after reading something that really upset me, and made me think hard about the definition of quality of life. A three-year-old child named Mia was denied a life-saving organ transplant because of her label. A label of “mentally retarded.” Which supposedly reduced her quality of life.

I want to clarify that it is the viewpoint of her parents that this was the reason she was denied. I was not there, and I don’t know the details of the situation. I very much understand and acknowledge that the selection process for a transplant is very complex. Also, I acknowledge that a transplant itself is no easy thing, especially for someone who already has health challenges.

It is also important to me to say, for the sake of fairness, that I cannot imagine pediatric healthcare providers taking such a stance. In my very vast experience of nearly every pediatric specialty, these individuals have a calling to care for children. And they find joy and wonder in every child, no matter their abilities.

Before I go on, I want to provide you the link to Mia’s story. If you google it, you will likely find many, many articles. Her story went viral. Here is another link from a news station that includes the hospital’s response.

I will leave it to you to form your own thoughts and opinions.

But here is mine: if Mia’s care team even factored in her mental disability when denying her a transplant, it is despicable. From all I have read, Mia had much joy in her life, and without a doubt brought much joy to her family.

And that is where quality of life comes into play. Who is to say that Mia had a lower quality of life, than, for example, someone without a mental disability? Isn’t that basically saying that happiness is only reached if an individual meets society’s standard of “intelligence?”

Horseshit.

But I do want to clarify something else here. I don’t feel that “labels” are all bad. These diagnoses are crucial for several reasons. When you know your child’s diagnosis, for example, it can help you find resources for support. It helps you connect with other parents, and better understand your child’s challenges and leads you to ideas to help your child overcome those challenges. Diagnoses help early interventional therapies be more successful, because they provide more information to your child’s care team. I know this firsthand, as we didn’t have a diagnosis for Grant for the first 13 months of his life.

These positives should not be underestimated.

But that is where the value ends. A label can’t define you. Or your child. And it sure can’t stop you from finding your joy. Your passion. Your happiness. Your quality of life.

Those that think otherwise?

Fuck ‘em.

And the horse they rode in on.

Advertisements

The difference seven minutes makes.

Did you know there is a secret society of badass moms called the “Second Shift Wives Club?” Yep, there is. I’m in it. I am hoping they don’t take away my membership card for outing us. We are hardworking mamas who have hubbies that work non-traditional shifts, or who travel. We have a secret handshake and everything.

But this blog isn’t actually about the Second Shift Wives Club. It’s about my dishwasher. Naturally.

Keep up, y’all.

Because, you see, there is secret war waging at the Meyer house – and it was started by our dishwasher.

But before I get into this, I need to make some statements. They are heartfelt and very true. I appreciate my husband very much, and understand that when he is at work from the hours of 1 p.m. to 10 p.m., he is working hard for his family. He would rather be home. But he works in distribution and logistics, and second shift is our reality. He does far beyond what many dudes do when it comes to household chores. He does almost all the cooking, loves to cut coupons and grocery shop, and uses his vacation time to either take Grant to Riley or help out on nights where the kids have conflicting sports practice schedules.

That said, he is driving me bat shit with the dishwasher situation. Every day, he finishes lunch, and before leaving for work, he starts the dishwasher. That means that every evening when I arrive home from work at 5:45 p.m., there is a clean load ready to be unloaded, and the counters are full of dirty dishes that have accumulated since the kids got home from school.

I have kindly explained to my loving husband that this means I can’t even begin the nightly onslaught of shit I have to do until I have unloaded the thing and cleared the counters. Because, as you and I know, children think they need to eat dinner every single night. They are funny that way. And I need space to fix said dinner.

I probably sound totally evil. I mean, how long does it take to unload and load the dishwasher and clean up the counters? About seven minutes, give or take. But I don’t have seven extra minutes. Here is the timeline of the average weekday evening at my house. Note: this is an easy night, aka a night with no sports practices (this currently only happens twice a week). You tell me where there is seven minutes to spare:

5:45 p.m.  – arrive home from work and debrief with my fabulous sitter, Breanna, who has been with the kids since they got home from school.

5:55 p.m. – go into the kitchen. Discover full dishwasher. Curse my husband.

6:02 p.m. – realize I don’t know what in the hell to cook, and that I need to start a load of laundry or else I won’t get it done before bed and everyone will have to be naked tomorrow.

6:04 p.m. – gather up dirty jeans and start a load.

6:08 p.m. – stand in the door of the pantry and scowl at its contents.

6:09 p.m. – stand staring into the freezer scowling at its contents.

6:10 p.m. – discover spaghetti sauce ready to heat up that my hubby made Sunday. Praise his name. Feel guilty that I cursed him over the dishwasher.

6:11 to 6:29 p.m. – thaw/heat sauce, boil noodles, heat bread, nuke some veggies and get plates out, all the while shooing Grant out of the kitchen as he attempts to come in every five seconds to nose around.

6:30 p.m. – call kids to dinner.

6:31 to 6:44 p.m. – stand at the kitchen counter shoving spaghetti in my mouth as I simultaneously go through the mail, start washing pans, check homework folders, sign nightly school agendas, give dog her meds, and start packing lunches for tomorrow.

6:45 p.m. to 6:52 p.m. – clean up kids’ dinner dishes. Loading the dishwasher reminds me I am pissed at my husband. Grrr.

6:53 p.m. to 7:25 p.m. – check homework, practice flashcards and frantically google the five main persuasive techniques of speech and prime factorization because I don’t understand my sixth grader’s homework.

7:26 to 8 p.m. (in no specific order) – call Lily up for her bath, start Lily’s bath, go down and bring up clothes left in the dryer, fold them and start putting them away while Lily is playing in the tub, call Grant up for a shower in the other upstairs bathroom, turn shower on for the water to warm up, leave him to get ready for the shower while I check on Lily, hear him yelling for help, run back to find him standing there with his shirt stuck on his head covering his face and his pants stuck down around his ankles because he can’t get his shoes off by himself from a standing position without falling over.

Let’s take a breath, shall we. Only about 10 minutes have passed at this point.

Okay, then I help Grant into the shower and leave him to soap up and rinse. But meanwhile, while I was helping Grant, Lily got shampoo in her eyes and started freaking out – causing her to get out of the tub, blinded by the bubbles, and run into her bedroom because apparently wiping her face with the drapes sounded like a great idea. But on the way to her room, she tripped – soapy, naked and blind – over the dog. Which scared Sara so bad she peed on the carpet. And Lily is now wet, soapy and covered in Golden Retriever fur. And there is pee on the floor.

Then, I help these two into pajamas and proceed to have the millionth discussion of my life with my 11-year-old son about why he needs to take a shower, and what very specific parts needs to be washed in said shower. Because if you don’t tell him every single time, soap may or may not be used.

8 to 8:09 p.m. – go downstairs and change laundry over, and get the kids’ “midnight snack” because even though they just ate, they are starved again.

8:10 to 8:20 p.m. – go back upstairs and finish putting away the load of laundry. Then I lay out clothes for the next day. Because if you think this timeline is hectic, you should see our mornings. My husband, who I dearly love, can only manage to sit half-awake in the Lazyboy each morning, clutching a Mountain Dew and looking for all the world like he has no idea where he is and how the hell he got there. But in his defense, it’s like 3 a.m. to him.

8:20 to 9 p.m. – for the life of me, I am not sure what happens now. I can just tell you it goes by really fast. I usually get on the computer and check our home and my work email one last time. Lily and I read out loud for her nightly school requirement. If it is Wednesday, we watch the Middle (I mean, who doesn’t love Axle, Brick and Sue?) and maybe Modern Family. If it is Thursday night, I try and watch Vampire Diaries while pretending there are no children in the house.

9 to 9:10 p.m. – I drag myself back up on my feet and fold the load of laundry that is now done in the dryer. I consider putting it away, and decide that is crazy talk. I get Grant his meds.

9:11 to 9:27 p.m. – tell children to go upstairs and brush their teeth and get into bed. The only one that goes up is the dog. Tell children again to go upstairs. Start turning off lights and electronic devices. Hear children shriek and run up the stairs because they have now figured out I actually meant it and they don’t want to be downstairs alone in the dark.

9:28 p.m. – panic sets in. What happened to my evening? I once again failed at my attempt to get kids in bed at 9 p.m. Run around like a crazy person to get everybody tucked in and then go brush my own teeth. Probably the cause of my lateness was the seven extra minutes caused by the damn dishwasher.

9:30 to 10 p.m. – Grant yells from his room for me to come give him a hug and a kiss. Then he has to go the bathroom. Then he needs water. I am now in an exhausted stupor.

10:20 p.m. – Mike gets home from work. I hear him coming up the stairs to change and take out his contacts. I prepare to rip him a new asshole about the dishwasher. But I may be too tired. Not sure. Then, he walks into the room and says, “Hey, I just put your coffee creamer in the fridge. I noticed you were out and stopped on my way home and got some. I knew you would want it in the morning.”

Damn. Now I can’t rip him a new asshole. Because he is awesome. Oh well, I was too tired anyway.

When you are married to someone who remembers your coffee creamer, who gives a shit about a dishwasher anyway.

Which was totally my point from the beginning.