Rainbow Moments

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“The good thing about painting is you can “cweate” whatever you want when you’re painting.”

There are so many different types of days, hours, and moments you can have as a parent. Sometimes bouncing around like a pin ball from the fun, exciting and new moments to the mundane, frustrating, and long moments. The fighting. The whining. The lost toys. The broken toys. These are the days that feel more like they lasted a week, with the disastrous looking house to support the feeling. And then you trip over the dumbest toy, yeah, that one, as you head up to bed. The toy that you never liked anyway. Who even plays with it? No one. That one.

Other times, we have these rare, soul-refilling beautiful moments. Rainbow moments. The pause time, hand over your chest, heart pounding, nearly exploding moments where you could just die of pure unprecedented happiness. The moments when you’re sitting there watching your children play, paint, dance, build, laugh, or just get along with each other and you feel like you’re watching the most genuine, perfect, and beautiful actors play in this movie happening right before your eyes. You think, “what did I do? These are my kids? This is my life?” Your eyes fill up, you could cry because you’re so overwhelmed and hyper aware of the rare beauty right there in front of your face. These fragile yet powerful little lives. Close enough for you to touch, so delicate yet so impressionable that you know you will remember these moments forever. And you have to imagine that these are the exact rainbow moments that you will crave someday when you’re older.

When I walked my kids home from school, I told them it was such a gorgeous day that we all had to play outside. I desperately needed to change the guinea pigs’ cage. I put the guinea pigs in a playhouse in the yard and the boys crowded in there with them until that got boring. They asked to build a fort with blankets in their tree house. “Yes, as long as you bring the blankets back inside,” I said. Then, my youngest began to cry and cry over wanting to play with a Spider-Man Lego guy of his brother’s. I lost all sense of patience and smart parenting skills. I kept telling him the same thing that didn’t seem to phase his frustrated tears. His brother came in to ask for a snack and made things better, thankfully.

We played outside as the sun began to set, which is the time of day that I have a love-hate relationship with. One of my boys begged me to get out the paints. I begrudgingly complied. I set up the canvas and the boys began painting. And then it happened. I exhaled and relaxed and watched them. One of my boys said, “The good thing about painting is you can cweate whatever you want when you’re painting.” So true. And despite my hesitancy in getting out the paints, the joy in his paint strokes in his rainbow painting made it all worthwhile. My husband brought Ben Rector music out and everybody started dancing. I sat watching for a few moments. I smiled at their enthusiasm and joy as they all tried new dance moves. Their energy. Their giggles. Their smiles. I had to join them. Afterall, they most likely inherited their goofy dance moves from me.

The crazy thing happened when time seems to pause and stand still, a rainbow moment, after the chaos, the rain, then came the beauty. The promise. The love overflowing. They’re my rainbow boys, constantly paving the way for these moments birthed out of their love and joy for life and the simple things, like dancing on the back porch. Thank God for these beautiful moments. Thank God for the honor, the responsibility and the privilege of being their mother.

Chocolate Chip Cookies

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Tonight, after we said a long gratefulness bedtime prayer and I heard my boys’ breathing get deep sleep heavy, I cried like a big old baby. There must have been a hundred reasons as I thought about all of the beauty of the day. ┬áThat yellow finch playing in the street in that puddle. The ruby throated hummingbird whizzing up to my kitchen window. My boys’ pure endless and exhausting innocence. It’s so damn hard to know if they’re prednisone tears without some sort of litmus paper, but I think tonight, they were the real deal. The kind that flood your face for a reason. Or perhaps a million.

I thought about eating lunch earlier today. “Mama, can I sit on your lap?” My almost five year old boy asked. We had a whole bench to ourselves, but yes. I sat across the table from a man, somehow my husband. A man that loves me in ways that blow my mind. Yet, I don’t always feel the enormous, overpowering sense of gratitude for him because marriage is hard. And distracting. Marriage with jobs, kids, and chronic illness takes hard to another level. But we do the hard together. And it’s not always pretty, but it’s always together. Always.

After school, my boys and I got ice cream. Then, we took a bag full of “World IBD Day” treats i.e. soft toilet paper, bubble gum, coloring books, flowers, smelly soap etc. for the nurses to give out to GI patients that maybe needed a boost. As we walked the halls of Saint Luke’s, hospital memories, many of them painful, suddenly overwhelmed me. Thankfully, the distraction of my boys fighting over who got to push the elevator buttons interupted some of the more difficult memories. The repeated NG placements. The depressing, long days spent laying in that hospital bed. The prayers that I uttered as they moved my fragile, aching infected body after surgery from one part of the hospital to another. I understand why people avoid going back to hospitals or places that trigger some of those vivid sensitive and hard to forget memories.

But I happen to love hospitals, specifically when I’m not a patient. I love the people there. They truly feel like touching heaven sometimes. Tonight, we rode several wrong elevators. We got lost and everybody helped us out. Everybody thanked us for coming. Perhaps, it helps being accompanied by three energetic young boys carrying chocolate chip cookies for the nursing staff. They had a hidden agenda. They eagerly hoped to meet all of the NICU nurses who helped take care of them in their first few weeks of life. On the car ride, they had planned out what they would say, “Hey! Do you remember me?” I didn’t have the heart to tell them that the nurses may not remember them. Seven years later. Little egos need not be deflated too soon.

After our hospital visit, we drove past a fun looking park on our way home, so we stopped. I hoped I could link the hospital visit to the fun playground in their memories and we could do it again next year. On World IBD Day. The boys asked if I would be “the monster” and since I had my running shoes on and I had just left a hospital that I used to long to get out of, I chased my boys around. And around. Because I could. Because I was free. Because I know there are others that want to be recovered and walking, running, and desperately want to feel better and want out of the hospital. I played for them. Maybe one day soon, they will play for somebody else too.

The most meaningful part of the day happened in the van, on our ride home. One of my seven year old boys likes to read bits and pieces of my blog posts. Yesterday, he had seen the title “It’s Not a Shit Bag.” I talked to him about my bag and how it’s hard to truly understand something if you don’t know anybody with it. His seven year old heart knows that the “shit” word is not a kind name. I talked about how we all can say things that might not be intended to be hurtful, we may even be trying to be funny but that our words have the power to really hurt others. Or really help others. I talked to my boys about the power of teaching others and forgiving others who made a mistake and may have said something that hurt us. They talked to me about being a pebble in the water. A sweet school lesson on the ripple effect. I believe that people, for the most part, want to be loving and impact others for good, but sometimes, we just don’t know what that looks like. I’m grateful that we got to have a conversation that truly mattered. On a day that possessed so much beauty.

I wanted to say thank you for all of your kindness and support and love. Today. And most every day. I’m so damn lucky to have all of you.

A Week Later

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It hit me.

I looked into the mirror as I washed my face and all of the sudden, I felt like I could barely stand up. Tears automatically escaped. I can’t go visit my grandma tomorrow to make things better. She died a week ago. An emotion-filled, crazy, constantly moving week ago.

I’m exhausted but I can’t sleep.

I was short-fused with my husband, my kids and probably the dog today.

The sudden onset of the painful realization that I can’t go visit my grandma a heavy, emotional mess tomorrow and leave feeling better hurts so incredibly much. I knew it would. That’s why I had such a difficult time leaving her, touching her hands one last time. She was one of the few people that understood me and what it means to have an illness. Something forever, chronic, never going away.

I took one of my medicines and cried because life is hard sometimes. And life is harder on some folks than others. Tonight, I feel like one of the ones that just wants a little bit of easy.

I just want to go visit my grandma. I want to hold her hand and hear her sweet voice. I want to sit in the presence with a person whose frail body possessed such a beautiful strength that made it hard to leave. Her “leave-my-door-open” spirit welcomed others in. I want to chase my boys down the hall to her room.

I want one last visit.

Since the morning she died, I keep seeing beauty popping up around me and I know it’s God or her reminding me that I will always carry her love with me. A butterfly played crazily outside my kitchen window tonight. I thought of her. I noticed a woman’s hummingbird tattoo on her ankle while playing with my son. I thought of her. I am grateful to have a million memory triggers. I am grateful for the strength of her love.

I am grateful for all that I have in front of my face, but I wish I still had her too.

Thanks, Prednisone

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Dear Prednisone,

I’m sorry. I don’t want to sound ungrateful for you helping me out with my gut situation, but you’re really starting to piss me off. I can’t focus on anything I want to, similar to a two year old unleashed in the grocery store. And thank you for making me obsess about things that have not bothered me for years. I will most likely get to that wallpaper and bathroom demolition shortly. Perhaps on one of these nights when everyone is sleeping. But I’m not.

Also, thank you for the new onset of emotional maturity ranging anywhere between an angry hormonal teen to a blubbering newborn baby. You make me feel like I’m losing my ever loving mind. You’ve taken my personality hostage and I can’t find it because I’m so hyper focused on cleaning the damn shower. Or getting those clothes to City Union Mission. You’re worse than caffeine and albuterol mixed. That’s right. You’re like ten espresso shots too many.

Thank you for inspiring all sorts of creative endeavors inside my head, but not donating to me the attention span necessary to accomplish any of them. Prednisone tshirts, awareness bracelets, and stationary? Really, Prednisone. How thoughtful.

I would rather go eat a house or save the world because that’s what you make me feel like I can do. However, if I was forced to pay attention or sit still to receive the directions on how to eat a house or save the world, I couldn’t do it. I can’t quite remember what it felt like to be two years old, so thank you for this stroll down memory lane. Unfortunately, I’m in a grown ass woman’s body, so I should probably get to making my “Prednisone Awareness” bracelet. So others will know. “It’s not you, it’s me.” Well, it’s actually you, Prednisone.

I really hate you.

You suck.

I have to go do something else now. For the next minute. Until I have to go do something else again for the next minute.

Please treat my personality nicely while you hold her hostage. Chocolate helps.

Sincerely,

Amelia

Ninety Four Years

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I sat there and watched the nurse wrap your swollen pink fluid-filled legs. And I hurt for you. You did what you’ve always done. You handled pain and aging and dependence on others in the most graceful way. You conversed with us, you smiled, and you playfully asked if we would like to sign your new “casts.” And I had to turn away after I told you that everybody loves you and wants to be around you. I didn’t want you to see my eyes fill up with tears. Because I already miss you. You said, like you always do, “those boys sure love their mama” as one of them tried to force his way onto my lap.

You’re so selfless and brave and graceful as you struggle to lift your coffee to your mouth. You always appreciate me coming and you act like a 99 cent McDonalds coffee or a few sips of Coca Cola are the kindest gifts. And selfishly, I want you to be here forever. Encouraging us, watching my boys grow, and reminding me in the most subtle unintentional ways of the amazing daily gifts right in front of my face.

I love to listen to you tell stories of the farm or the boy who had a crush on you in highschool. Or the time your big sister, Zella, saved you from drowning because you couldn’t swim. I want to hear stories of my mom growing up in your house. I want to tell you how much I love you. How I know it had to hurt to leave the house you lived in for 59 1/2 years. I want to tell you how I loved sitting at the kitchen counter as a child watching you make fried pies and how I know that you always saw me eat more than my fair share. More than my siblings. I want you to know that I purposely washed that perm you gave me out of my hair because I looked like a poodle. Sorry for lying and saying it was an accident. I didn’t want to hurt your feelings. You always think I look beautiful. I want you to know that you make the best everything, biscuits and gravy, fried chicken, cobbler, sugar cookies and pies to name a few. I want you to know how much I am going to miss our visits. I don’t think I can tell you all of this because I would cry. And I don’t know if I could stop. I don’t want you to hurt for me. You’ve taken on the weight of the world for the past ninety four years. And you need to know that you deserve a break. You deserve Heaven.

I want you to know that we will be okay without you. We will miss you terribly. You should know that you have inspired us all. Your humble, grace-filled beauty lives on in every single one of us. We will continue to make you proud. We have learned about living life and loving others from the best. You are one of the most gentle, kind-hearted, selfless, unbelievably strong, smart and brave women to ever walk this earth. Thank you, Grandma, for all that you are, for all that you’ve sacrificed, for living so humbly and aging so beautifully. Thank you for leaving an impression on every person who has truly known you. We are the lucky ones.

I love you, Grandma.

And as you always tell me, “I know you do, Amelia. And I love you.”