I keep reading and come across an article written by a woman in the Philippines and her words enrage me and break me. She only has across to one medication. A month's prescription costs her ten times her monthly salary. "This is not okay!" my stomach reels. We have the resources and capacity to heal the world, and we choose not to! Breathe. She describes that people in her country sometimes lie to get other medications through customs, calling them vitamins. She goes on for several paragraphs to list the names of other PH friends she's found over the years. Every paragraph ends with their death. Her hope was beautiful, though. She's working to create an PH Association in the Philippines and bring all the PHighters together, not only to help cultivate support, but to give them a voice in government to help create funding for their medication. And reading it wrecks me. It creates in me a hook to hang my pity on for our own situation. I have nothing to complain about.Yes, I have a child with a terminal, incurable disease...in a first world country. It humbles me to think when I dabble-dream about going overseas on a missions trip, I have not yet had to be nearly as brave or strong as the mothers there. Anything I feel I would have to say feels like a discarded balled up paper only good for shooting wastebasket shots. I'll have to work on rewriting that dabble-dream.
Then it's 7 and Ethan comes in and I get to vomit a bit of my emotional episode so that I can get on with my "Cinderella chores," as I like to call them. Dishes, laundry. I hear on the baby monitor, "Mommy, Mommy, Mommy." The two older kids find their way downstairs in the dark for breakfast. Morgan inquires on behalf of her little sister, "Will you go get Kylie?" I walk upstairs and pick up my little Kylie-boo. Our first stop as always is my bed, where I've learned from 600 repetitions to untie her snowboard boot in the dark (she was born with a club foot). Then downstairs to deal with the diaper.
A few of the lifestyle choices our family has made always makes this part of our morning one of our down and dirty tasks. We chose, back with our first child, to cloth diaper. So if it's dirty, you have to clean it. We also have gone mostly grain free, so there isn't a lot of rough bulk down there anyway. But Kylie's medication has this great ability to liquefy it. We always apologize and thank caretakers in advance when we know it's probably coming on their watch. (The extent to which I love my MOPS and Mosaic childcare workers is astronomical.)
Breakfast is served. I draw up Kylie's morning meds into a syringe. I give a quick prayer thanking God for my friend Heather, who is a pharmacist and saw a need a never new I had -- liquid medication adapters. They plug the opening of a bottle of liquid meds and have just a small opening, like a salad dressing bottle, that fits the syringe so I can tip the bottle upside down without spilling or wasting any of it. It's beautiful.
Ethan makes my breakfast, as always, so that I can eat one meal while it's still hot. Well, if I'm not already busying myself as most of us mothers do. Our children's training seems to be paying off as they all clean up their own breakfast dishes and run off to explore the wonder of the day.
Morgan and Ethan leave for school and work. And it's now just the three of us. I look and see we still have remnants of last year piled around the house: superhero cutouts on the wall from Sean's birthday (that was in July), paint and canvases from Morgan's birthday party (November--not as bad), and a Christmas decoration or two still needing to be packed away. The holidays and vacation have left my prayer wall and to-do list extremely out of date. I should update those....I give myself some minutes to tidy a few things, though I hold to my promise that toys are not "my things" to put away, so they stay. And now I consciously choose to be present with my kiddos: marbles are the activity of choice this morning. I whip out my degree in engineering (I don't have a degree in engineering) and we (well, I) build an impressive marble run course. Their fascination is endless.
I sit down to waste a few minutes on social media. Mixed in with a bunch of beautiful updated profile pictures and nearly envy-inducing vacation posts are pictures of my little PHriends in hospital gowns and posts about whether the IV site on their child looks "normal" when it's all red or yellow; you know, when normal is having a hole in your arm. Or your back. Some others post about still grieving yet another loss in the PH community. Some moms still have their profile picture as Alyana's angel wings (our PH periwinkle awareness ribbon with her name and angel wings). She had a stroke and got the flu and didn't recover. They aren't sure which happened first, but it doesn't really matter. She was nine.
The spot where I pause the longest is to read an update from Billie Jo, a mom of an 18 year old PHighter. We met them both at the PHA Conference last June. Brooke has been coughing up blood and they are still trying to figure out why. I'm hopeful in reading that her PH team in New York is working with the team at Mayo in Minnesota. Not always in agreement, but communicating none the less. It fills me with excitement as we are meeting our specialist team at Stanford next week.
I had the delightful pleasure of my friend Shauna coming over for lunch. Oh, the lovely life of my young motherhood. She and I sit trying to have a conversation while my four year old son, Sean, works to impress her with his new Christmas toys: a foam rocket launcher and his first Nerf gun. We take a pause because my phone alarm goes off at 1 o'clock: time for Kylie's meds, which she sucks down like a champ. We spend the remainder of our interrupted conversation with the game Headbandz adorned on our heads because Sean thinks we should play; although he always insists on looking at his card first so he knows what it is. I cherish that I have friends who will just go with our crazy, silly, fun life. Kylie during all of this has decided to climb in our toy box, diaperless, because she's killing the day-time potty training (thank you Brenda for the kick in the pants), and is hanging out among toy swords, baseball bats, and rollerskates. My thanksgiving prayer at the end is, "Oh thank you Jesus she didn't pee in there."
Now we pack up to go get Morgan from school. She has art class today, so we are picking her up from parks and rec, which is great because I don't have to get out of the car! This is such a blessing because we have surrendered the fact we have a toddler that doesn't nap. I'm sure this is her natural bent in life, but there are also 33% of children who have insomnia as a side effect from her medication. So I'm sure between the two, I'm destined to be tired for a very long time. But when she's strapped into the carseat, she seems to doze off. She's asleep when we pull up to the school yard, and Sean embraces his responsibility of sister-retriever.
Traffic to art class is AMAZING because it's been raining. People don't leave their house if they don't have to when it's raining in LA. So we get to art class and now I have two sleeping children! I thank God for the metered space that's right out front (and is usually always full). I pull out our handicap parking placard so we don't have to feed the meter. (It's one of the few "perks" of having a child with a disability). This is one of the rare moments where Morgan and I can talk uninterrupted. It's kind of nice. Her love language is quality time which I know I will never be able to give her enough of even if she were an only child. It's been nice to accept that.
She goes in to class and it's nice to close my own eyes for a few brief second. We normally go on "adventures" while she's in class. We've walked to a kids consignment shop where Sean is obsessed with the train table they have. We've gone to the library, walked and watched a car wash, gone to the grocery store with the "moving stairs" (escalator). But with the rain, we're just hanging out in the car. I even brought the game phones which we normally only bring when we go to the doctor (which is actually a lot).
At the end we get to go in and see what she's done. Today, she's finished a marker drawing of Hello Kitty. Kylie's in love with the picture. Hello Kitty's one of Kylie's favorite things. The others are "Lella" (Cinderella) and the Mickey Mouse characters. I love when they finally latch on to something at a young age!
We drive home and now it's dinner prep. While the kids play with cars, they also turn on a story that Amma introduced them to called Patch the Pirate; think radio theater for kids. It's louder than I'd like, but I don't say anything. Then Morgan asks to watch a video, debating that Sean watched it this morning. "When you're halfway done with your school project." is my reply. Then toy cars start to get driven off the table, crashing to our unforgiving stone floor. They receive the death glare because "I've told them before not to" and it's late and I'm hangry. Now Morgan wants to watch the video because she's met my requirement (which I didn't think she'd hit before dinner, but I need to follow through because that's what good parents do, right?). So I'm trying to find this video, which I can't in .2 seconds and I'm stressed about burning dinner, and the music is still loud, and Kylie crashes another car onto the floor. That's it! My sensory limit has been exceeded and my tolerance snaps like a rubber band. "YOU'RE DONE!" I belt as I wildly grab Kylie from the chair who immediately begins to cry. And instantaneously, I know I'm wrong and have terrified her and while she's still being swung through the air I start to sing, "I'm sorry, I'm sorry, you know that Mommy loves you," no longer caring about anything else but her tears. I thank God for Ashley who told me she sings to her kids when she's going to lose it.
I regain control of myself and focus on the things I need to be a good Mommy at the moment. Music down. Sorry Morgan, the video needs to wait but we'll find it. Kids, please clear the table for dinner. We eat without too much conversation because we can all see Mommy's tapped out. Then... Daddy gets home!! Yes, I love him and I'm glad that my husband has arrived back in my life. But usually the first thing that enters my mind is, "The reinforcements have arrived!!" Tonight they want to wrestle; that's Daddy's job. Even Kylie cries, "My chern! My chern!" It gives me a breather and I decide to sort through photos from the last year in our large camera dump folder on the computer, deleting what I don't want to keep. I love looking at them and relive those moments as I go through. I'm thankful for Tiffany, who told me she doesn't do dinner dishes until the morning. Blew my mind and it has changed my life.
Pajamas, teeth, and books in Mom and Dad's bed. Kylie's picked The Little Lost Penguin. Sean's in a Dr. Seuss phase and has chosen Horton Hears a Who and Morgan has a story from her Disney Fairies Collection. Dad is getting Kylie's diaper, meds and boot ready. Kylie interrupts the story with "No boo! No boo!" and begins to wail. She sees the end of her day coming. She still has to sleep in her snowboard boot until she's three. Eight more months, baby. We all take turns reciting our verse of scripture for the month. The kids like to stand on the bed when it's their turn. Morgan has moved into a new class this year, so they no longer share the same one. And they're a little harder. It's sometimes nice to see your child struggle a bit and be able to encourage her in it.
We go around and share what we're grateful for and ask if the kids want to pray for a friend tonight. Morgan chooses Kylie. "Dear Lord, please let Kylie's lungs feel better so that she can stop having to take the medication." It's beautiful and from her heart. We haven't yet explained to them the full extent of Kylie's disease. I almost cry for several reason. I love how compassionate my kids are. Morgan didn't choose to pray for Kylie not to scream for 45 minutes because she hates going to bed, which keeps the kids up. She chose to pray for the thing she can't see, only something she's been told. Kylie doesn't look sick and doesn't act sick. Currently, she doesn't display any of the symptoms of PH: fatigue, dizziness, fainting, or shortness of breath.
The other reason is that used to be my prayer too. And it may be yours too for her, but mine has changed. It would be amazing for her to be miraculously healed, and we could stop all this hospital business and medication. But if that happened, that's only good for our family; it doesn't help any of our PHriends. We would have gotten "lucky." No, my prayer has become for the person or team that will discover the cure for this beast. That God ignites a love of science and curiosity in them. That they have teachers that tell them just because it's never been done doesn't mean it's not possible. That they will possess qualities of tenacity, focus, and determination. That they will have champions who believe in them, support them, and finance their dreams. Because that will cause the greatest good.
Then it's hugs, kisses, high fives, and scruffles and off to bed. I fill their essential oil diffuser with Breathe tonight. I rotate between several different ones that help with respiratory health and immune health (Eucalyptus and peppermint, Melissa, Breathe, Lavender, On Guard). Balance is a new one I heard may help with Kylie's night terrors. Maybe in next month's order we'll have money for that one. I thank God for Lorrie and Cathy who have been so helpful in introducing me to oils and how they can help our little PHighter.
We turn off the light and Kylie's screaming begins. Tonight it's only about 40 minutes. It's date night tonight and Ethan has picked Couple Scategories. We've learned that in this season of life, going out at night is nearly impossible. Not just because of Kylie's screaming, but we're tired. Sleep is almost more important than socializing. Plus, it saves us the text messages from the sitter saying Kylie's still crying, should they do anything. And she's always been a screamer. I used to joke that it's hard to believe she has a lung problem with force like that. But it is on my list of growing questions for the specialist. I know some PH patients sleep with oxygen masks on at night.
Ethan and I laugh while we play and eat a large pile of dark chocolate he picked up. We tag team reassuring Kylie that we are still downstairs and that it's time to sleep. We finish and now it's our turn to sleep. Our prayers in this season are rather short; the morning comes early. Ethan's asleep in two minutes. I turn the flashlight on my phone and read through the next section in my book, The Whole-Brain Child which I heard about at MOPS. It's explaining so much of my own life, even though it's a book on how a child's brain develops and how we as parents can nurture that development and balance our expectations of our kids based on what they are actually capable of understanding. I'm thankful for all my MOPS moms who have been a lifeline these two years, supporting me when I'm about to lose myself and lifting me up to be the healthiest woman I can be.
My light goes out and I bury myself under the covers in my Eskimo-equivalent pajamas. I argue it's not 68 no matter what the thermostat says. Ten blankets or an electric blanket would be nicer, but I do this because it is the only way I will get myself out of bed when a child wakes up and I have to traipse through an uninsulated house when it's 38 degrees outside. And luckily tonight, I'm tired enough to actually fall asleep. Thank you, Jesus.
*****
The events in this post all happened last week, but I took the liberty of consolidating them into one day for the narrative. I wrote it for a few reasons. It reminds my that in every day there are good things that happen; I'm a good mom and I have great kids. It also reminds me that my life is difficult. Yes, I have a child with a rare and terminal disease; that's just life. Normal now operates on a slightly elevated level of hard.
Third, it was cathartic to write this. About a week and a half ago, our Pastor announced he has cancer, and immediately, my heart broke for his family because I believe it's sometimes harder to be the people who walk beside someone who is sick, because they have to make a conscious decision to stay checked in. And something he said resonated with me. He said, "Don't ask my family how they're doing. They're not ok." And that is often how I feel. So when I'm asked how I'm doing or how Kylie's doing, I literally have to block out half of our current life to say, "Good." So I ask that you be careful how you throw that question around. Yes, some days may be great for us, and I will readily tell you. But other days, even when Kylie is doing what every other two year old does, my mind is always loaded with information about PH and other families affected by it.
Both motherhood and PH have made me a more compassionate and grateful person. I'm more sensitive to people's pain and sadness, especially my kids. I'm eternally grateful for the women God has surrounded me with that speak wisdom, encouragement, helpful tips, and comfort into my life. And the things I find I appreciate the most are the small things.
Hugs: I need a lot of them. Because a hug when you mean it is like emotional oxygen.
Encouragement; motherhood is hard enough and we all need our tribe to champion us. But a mother who has a child with a chronic illness can never hear enough of, "You're doing great." "Your kids are wonderful" "Nothing your kids do will surprise me or make me think less of you." (Thanks Becky for that one!) "You give me so much hope." "You look great today."
Sitting with me in the chaos; the friends that will do life with me and my crazy crew are pure gold. I need you. I'm not superwoman. I possess no magical or supernatural powers. Yes, your hands will get dirty, but the joy and smiles you get in return can never be wiped away.
I love you all so dearly. Thank you for your prayers for our family and for a cure for our little Kylie-bear. To hope and the future!
We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.
The Pathlight magazine is published through the PH Association.
I attend MOPS which believes that Moms makes a better world.
