In our living room hangs a beautiful framed print with a quote by a poet named Rywka Lipszyc, a Jewish teen who was imprisoned at Auschwitz, that says, “Although life is difficult, it is also beautiful”. My sister and brother-in-law gave it to my husband and I a few years ago for Christmas. I look at it often as I snuggle on our sofa with Zoe. While our struggles in no way compare to what Rywka experienced, they are still true difficulties and they are nothing to brush away and ignore.
A few days ago we had a school conference for Zoe. It started the way they all do, talking about goals, talking about issues, talking about social skills. It then diverted into talking about the next school year and a new school and how to best help her succeed. But I was tired. It had been a long week at work and for once I opened my mouth and acknowledged the (pink glittery) elephant in the room that we were all ignoring. I gave voice to the thoughts that stream through my head every moment of every day but which I never say out loud, and I did it in a truly un-glamourous, undignified way, with messy mascara tears and a high pitched voice. I don’t actually remember much of what I said, I was too emotional and invested, but I was honest. The gist was this, why the hell are we pushing Zoe so hard scholastically to fit a mold, when she can’t actually keep up with her peers and will only get further and further behind as the grades progress? Why are we making her miserable at school to the point she bursts into tears when we mention multiplication or really any math? Why are we trying to make her fit a “typical” mold when, in all honesty, she is never going to go to a regular college? She will never take the GRE or go to Knox College like I did (no matter how much she talks about it). If she only has a few years on this earth, can’t we find an academic level she feels good about and that encourages her to learn, but doesn’t cause her to tailspin into depression and self-doubt and self-hate? Why are we taking this beautiful child and trying to make her fit a mold that doesn’t work for her?
Zoe is an interesting study in “typical”. When you first meet her she seems “normal” (God, I hate that word!). She engages, talks, participates. But soon you realize that she acts fairly young for her age. She is naive in a beautiful way. She is kind and sweet and just wants to be your friend. She loves playing doctor and school and family. She loves books, but struggles to read anywhere near her grade level. She REALLY struggles with math concepts and retention. She is interested in things that kids several years younger than her usually like. She does great with younger kids and adults, because the younger kids relate and the adults take the time to understand her and play along. She can’t focus for long periods of time and she is often easily distracted. You top all this with her physical limitations and medical needs and there are not too many kids like her (and certainly no kids like her in our school district).
Not that I want to put any more labels or limits or restrictions on where she might climb to in this life because we can never really know. Someday there might be a cure for Pulmonary Hypertension. Someday Zoe’s math and science skills might all click and she might become that doctor/ nurse she talks about being. Someday Zoe might be giving TED talks about her struggles as a kid and how she overcame all her obstacles. I suppose we never know what will happen someday. But right now we are dealing with the difficult reality of NOW.
All this to say that, as much as I try to always face life with a positive attitude and a go-getter spirit, life can be just as difficult (sometimes more so) as it is beautiful. Difficulty and beauty take a toll on me. For every moment I have of over achieving, I have two moments of self-doubt and worry about Zoe’s future. I am the worst (or possibly the best, depending on how you look at it) at putting on a false front and pretending like everything is okay. I struggle with giving myself time to deal with things that really are game changers. Last year alone, Zoe had two heart surgery procedures and changed the way she receives her Pulmonary Hypertension medicine. While the surgeries went better than we could have ever expected, her new meds cause her excruciating pain one week out of every month. This has become our new normal. The first time she endured the painful reaction to her meds, Zoe and I just sat in the kitchen, held each other tight, and cried for hours. It freaking sucked. Not being able to help your child is the worst feeling in the world. You combine all those medical needs with a day job that takes everything I have and it leaves very little time for me to process what happens in the everyday.
But, since it is a new decade, I thought I’d try and put some perspective on my thoughts. So, in no particular order, here are twenty (20) difficult and twenty (20) beautifully true statements for me as I start 2020.
First the difficult truths (because no one wants to end on that note)…
1. Life is hard and sometimes it’s all too much and too busy and too overwhelming.
2. I feel empathy alongside something like outrage when the world goes to pieces over the death of a celebrity and yet I can list off fifteen children under the age of eighteen who passed away from hideous diseases in the past year and as much as I don’t like to admit it, my own daughter will likely be one of them one day.
3. If the world cared to love and listen a bit more than they cared to react and incite and judge, we could move mountains.
4. I struggle with how to love wholeheartedly people who believe in the current political policies.
5. Occasionally I think I would rather work in a flower shop again than in theatre. The thought of a Monday- Friday/ 9-5 job has its appeal on a 90-hour tech week.
6. Oftentimes, I give my job way more than I give my family and every time I do it, I hear life tick-tocking quickly by.
7. Friendships are hard to maintain and I am often lonely. But lonelier still might be my daughter who struggles to find her place in the world and around her peers.
8. Watching your child in pain is the worst feeling ever.
9. I will vote for whatever Democrat is the presidential nominee in 2020 because I can’t even with the past 4 years.
10. I keep too many feelings buried just below a turbulent and silent surface and I need to learn to share them with my loved ones.
11. School conferences are brutal when you have a less than “typical” kid
12. There is more to life than good grades and climbing the career ladder to success. Also, the term “highly capable” in a school environment makes we want to scream like that guy in the Edvard Munch painting.
13. Brene Brown was not wrong when she wrote about a “midlife unraveling”. It’s real y’all.
14. Admitting I can’t do it all is terrifying for this Type A/ Enneagram 3/ People pleaser person.
15. Sometimes a smile and an “I’m good,” are the farthest thing from the truth.
16. Faith is hard. Sometimes what you were raised to believe doesn’t make sense but neither does anything else you’ve tried. Sometimes shitty things happen to good people.
17. Sometimes I just want to run away for a week and sit in a hotel overlooking the beach by myself and just write and read and think. No family, no friends, no noise, just me and my thoughts.
18. The song “Smiling” from the Broadway musical Jagged Little Pill. Just listen to it already, it might be the new anthem of us educated, white, middle age, middle class moms.
19. Long division is an unnecessary life skill. Calculators are your friend.
20. The podcast “Terrible Thanks for Asking”. You think your life is difficult? Listen to these stores and then listen to the tales of survival and moving forward with grief. We are all in this world together.
These things are also truly beautiful…
1. Paris. It is truly as gorgeous as all those pictures you’ve seen and those purple sunsets are magic. Oh, and that flea market? There is not a better one anywhere in the world!
2. My daughter. She is a freaking miracle!
3. Emmylou Harris. She makes everything better (at least temporarily.)
4. Peonies and peacock feathers and anything by Gustav Klimt.
5. Seeing two of my dear friends, Michele and Sara , become published authors this past year!
6. Binging shows on Netflix in another language. You should watch these TV shows in this order: Bonfire of Destiny (French), Gran Hotel (Spanish), Cable Girls (Spanish), Hache (Spanish), Palm Trees in the Snow (Spanish.)
7. These books – they are magic and you should read them all in no particular order: The Night Circus (Erin Morganstern), The Brothers K (David James Duncan), Outlander (Diana Gabaldon), The Time in Between (Maria Duenas), and The Shadow of the Wind (Carlos Ruiz Zafon.)
8. The graphic novel “Ghosts” by Raina Telgemeier. It’s a story about a girl with medical issues who has to use oxygen daily. The smile on Zoe’s face when she reads about someone like her is priceless.
9. Saturated, hot colors and creatively curated collections of odd things (vintage baby doll heads, the letter “Z”, vintage sewing accessories.) I love all things baroque floral, paisley, and art nouveau and I can’t abide an undecorated white wall.
10. The podcast “Terrible Thanks for Asking.” Yes, this is also on the ‘difficult truths’ list but it’s also here because it will make you feel all the feels. You will laugh, cry, hurt, and be healed. All in one hour.
11. The idea that perhaps all that really matters in this life is that you are loved, you are happy, and you are content with your accomplishments.
12. Pink bubble baths with your kiddo while sharing all the secrets of your souls.
13. Amy’s Bakery in Hell’s Kitchen. They have the best almond croissants EVER!
14. The musicals Jagged Little Pill, Moulin Rouge (I am a bohemian at heart after all), Natasha Pierre and the Great Comet of 1812, and Hadestown. Truth, Beauty, Love, Freedom!
15. Blackberry pie. It is the best breakfast food ever (and bacon; I love bacon).
16. Acupuncture. It makes moving in your mid 40s actually bearable.
17. A powder dip manicure. I feel like a girly-girl with my perfectly manicured, never chipped nails.
18. My fellow parents of special needs kids who soldier along silently and without asking for pity. I am grateful we can share our pain, anger, and fears in a safe, supportive space.
19. Our farmhouse at Christmas. It’s aglow in pink and red and gold lights and it is truly magical, especially when it’s snowing.
20. The fact that my favorite glass votive color is called “Diva” and my favorite nail polish is called “Destiny”. Apparently I’m a diva with a destiny!
Be kind y’all. You never know what struggles people are dealing with.
Sequins and Syringes 