Happy Mother’s Day to all the mommas I know and love. To all of you who wake up the in the middle of the night to check on your babies for no particular reason. Who kiss boo boos, wipe away tears, hold them all night if their littles are sick, fight with doctors or insurance companies for what’s right and good for them. For all of us who love our kids more than we love anything. For you single mommas who have super human strength for doing all that you do on your own. For grand mommas too for that special grandmotherly love that moves mountains.
To my own mother.. thank you for being my rock. When you tell me that I can do something…I believe you more than anyone else. Thank you for holding my hand and climbing into my hospital bed when I became a mother myself. When I wasn’t sure where to start or what to do… you made me believe in myself. You shower bug with love and books and clothes and toys that are best for hearing loss. You research and find and buy books that’ll help push me forward in my journey. You’re my core and taught me how to be strong with your own example. And to my grandmother… I hope to be as amazing as you are at 91. You have given so much to your children and grandchildren. Thank you for my education, my wedding, and for giving and giving to everyone around you to make their lives better. You taught me generosity, southern hospitality and humor. To my mother in law, you have taught me grace and faith. You love so much and so huge. All of you women have woven such a tapestry of love and provide such great examples of strong women for Landon.
So much love in my heart today. Mothers are so special and I feel like my life has just started now that I’ve joined this amazing club.
I wanted to dedicate a post to all of you that have helped us in our hearing and speech journey so far. All of the teachers at Clarke- especially Cassie, Melissa and Kristen, Meredith who runs Clarke, Michelle the audiologist at Clarke and the other Michelle at Cornell. Then there are my momma friends at Clarke…I could go on and on about you ladies. This list of women taught us how to succeed at parenting a child with hearing loss. How to cope, how to learn, how to be patient. That it’s okay to cry when you need to…. and that I’m not alone. The biggest gift I have been given since Landon’s birth, is y’all. You women have honestly made this journey comfortable, easier and fun. I count down each week until Wednesday when we can trek over to Clarke. Simply put… I love y’alll.
And during this month… what better time for bug to be fitted for her second baha?! Someone recently said to me “I hope she doesn’t have to get a second one,” thinking it was a negative thing. Think of it this way… it’s like getting a second ear. She’ll hear everything, be able to localize the sound and I truly believe it will help her form her speech sooner. I haven’t noticed a huge difference yet with the loaner, but I know there must be a difference for her.
The tricky thing is… we need a prescription for the 2nd baha. So for a week I’ve called her pediatric ENT. Called three time a day actually. And yes… I’m still waiting for her doctor to call me back. One person called me back yesterday to ask me “Why?” What do you mean “why?”!”.. I stammered back to the clinician. “Do you understand what y’all do for a living,” I asked him. I realized in that moment, no one will ever understand like the people I listed above. Not all doctors even in this community will get it completely. That’s what made me realize just how truly lucky we are to have other advocates for our child. It gives me a confidence to keep hounding this doctor and demand he grants her permission for this second hearing aid. I can feel those women’s strength behind my voice when I tell the 5th person that answers the phones why we need this script, why I need answers today.
I’m rambling now, but truly I want everyone to know how great these people are. This school is a gift and I wish I could hug Clarke’s founder and tell him the impact his school has had on our lives. And to all our Clarke and Cornell hearing and speech warriors…thank you.
Been away from my writing for a while. I’ve been dealing with…stuff. Icky, rotten, feeling unlike myself stuff for the past month. I got through bug’s surgery fine…but other stuff has been bubbling for a while. For some semblance of privacy, I’m not going to go into too much of the whys. But I will tell you… I sat there one night, looking at the monitor watching bug sleep and couldn’t stop crying.
It was just all too much. I had lost myself somewhere. I had lost myself to the worry. After I became a mom, the thing that made me Eloise took a vacation. Worry took over my life and my sleep. Worrying about her hearing loss; that she’s not saying consonants; do we get two hearing aids; what to feed her with her super duper small throat; do we do enough therapy at home; what happens when I’m not with her all day; I’m such a bad wife…..I was so mean this morning, why do we fight when we love each other, I forgot to feed the dog; I forgot to do laundry; did her eye look red this morning; will she be bullied in school; if we move what about all these great doctors and therapies she has? Oh the worry. And even on the days… where the glasses are all half full… I still felt sadness lurking.
I have a really hard time telling other people there is something wrong with me or my family. Don’t let anyone see the cracks type of mentality. After reading almost all of Momastery one morning, I called one of my best friends. I let it out….”I’m not me. I’m unhappy and I’m not sure exactly why…and I’m now worried about that on top of my existing worry list.” In her most calm big sisterly voice, she took a deep breath and told me I was going to be just fine. “Landon is happy and healthy…that was step one; step two is to fix you…., third is to fix anything else that still needs fixing.” How profound, I thought. One step at a time. (PS- Momastery opened my eyes and my heart. If you don’t know it, please see what I’m talking about. It’s the Holy Grail of openness and reminding women that we’re warriors and to love each other).
I used to give this great advice to others… “you cannot love anyone else properly if you don’t truly love yourself.” What I forgot though is that even after you find the love of your life, you still have to love yourself just as much. I realized that with our wild and crazy rare syndrome tornado of a life since her birth, I hadn’t actually stopped long enough to realize I hadn’t felt like myself. I didn’t really love myself. I’d been mildly depressed since she was born. I had this odd feeling before I had her that I needed to watch out for postpartum depression. But I didn’t feel it right away- it was masked by something so huge and intense and my emotions felt specific to what we were dealing with. Once we got the hang of it though, and were on our happy path… I would have these moments of sadness. It was an out of body feeling. I knew that I wasn’t me and what I felt wasn’t right. I had gone through this world-altering experience so of course I wouldn’t be the same … that’s what I said as I sat and cried for no specific reason. One day though, I realized it shouldn’t actually be that way. My sadness wasn’t actually tied to anything syndrome/hearing related. PPD can happen months later. I didn’t know that but here it was staring me in the face.
So… I went to see a couple docs. I got something and it makes me feel balanced again. I feel like Eloise again. I am happy and positive again. No more with the negatives. I’m not numb either like I thought I’d feel. I just feel more like me again. And part of my own self-prescribed therapy is to share it with you. To help that one mom who is too nervous to call a doctor or to tell her girlfriends or husband. I wanted to share that it’s okay to. To decide to love yourself again and put yourself first occasionally. Everyone else will just suffer if you don’t.
The 2nd best medicine I ever prescribed myself was a serious night out with the girls. Not just a dinner that was nice but it’s still early kind of night. It was a 3:30 dancing with your best friends, laugh so hard you cry kind of night. I woke up feeling like I was dying but also feeling more alive than ever. I had fun. I had forgotten what that was like honestly….fun I’d been the pregnant one for 10 months, then instantly a special needs mom. I hadn’t been a wife either- definitely just been a mom and a coworker. It is too easy to lose ourselves, to lose our identities as individuals and also as wives. We become mom and that’s it- it’s everything. The balance is impossible but we have to fight for it. Have to keep each part of us alive.
And now? I’m doing really well. I still have work to do. Things to discover about myself, things to work on and things I will now ask for. I found my voice again and the courage to share with other women and with y’all. The courage to admit that I don’t have it all together.
We women are so funny that way. So seemingly intent on making our lives look perfect or close to perfect when they’re not. It’s okay to say they’re not. All we can really do is just show up, be our authentic selves. Oh…. and go dancing more often….
With Mother’s Day looming, let’s celebrate the amazing women that are mothers and all they do. For fighting for balance, sanity and for finding time to put makeup on. For friends who understand you without you having to explain yourself. We women….we’re pretty incredible.
Bug showed me how to be strong today. She got up at 5:30, got to the hospital, into her gown and into the OR with such a sense of peace and calm. When she fussed, it wasn’t serious. Show her a toy… and she was content all over again. So your prayers were definitely felt, friends. Thank you.
The good news… the surgery went well. Her eye is turning in for now and will slowly turn out and normalize. And I actually held it together. There were a few tears after I left her with the doctors. I left my heart with them after all.
She is currently smiling and kicking her feet. She’s chewing on Sophie. She’s bug again.
The not so fun stuff… her eye is swollen and bloody. It’s runny. Her airway b/c of her Treachers is extremely small so the anesthesiologist had a very hard time with the tube. She’s horse and her breathing sounds labored. They marked her face in permanent marker. Bo thinks it gives her street cred.
She is smiling though. She is laughing at Kinglsey. She’s pulling on her headband and holding her new stuffed giraffe. She has barely cried and either did mom. If bug was going to be that strong, mom would rise to the occasion also.
To some this might sound strange, cliche, but I felt your prayers. When I started to get weak, I was able to steer myself back again.
We’re off to eat an early bird special and go to bed though. Momma is tirrrrrred. Here are some pics of our journey. More later this weekend when my brain starts to function again normally.
It’s almost here. Landon’s first surgery. True…she needs this. True… it’s the “easiest surgery” in her lineup of surgeries. True… my anxiety has a firm grip on my entire body. It’s hard to swallow, it’s hard to maintain an even keel. I’m not emotional, just riddled with butterflies and perfecting the teeth grind.
I was telling my friend at work today that I feel like I’m having an out of body experience this week. I’m emotionally okay. I haven’t cried. But the anxiety…. is just eating me up. I keep wondering if the two will catch up with one another.
The interesting thing that keeps popping into my thoughts is that I have been tested before in life. I have had to find resolve and strength and make the conscious decision some days to “show up.” I’ve struggled so that I can be this mother. I can survive the following minutes after they take her from me. I can be strong for her. I can comfort her when waking up from the anesthesia. I will find a way to get through the 3-4 hours. I don’t’ know how. I don’t know what I’ll do with myself. But I plan to just keep saying “I can do this”. Probably out-loud so to freak out anyone else in the waiting room.
Tonight over pureed green beans and rice, bug and I talked about what her Thursday would entail. She babbled “Ahhhh, eehhhhh” and opened her mouth like a little bird for more dinner. She smiled and I got one good giggle out of her. I told her about God and how she’s a part of a much bigger story. I told her that he was always watching over her. That we had people all over the country praying for her. I told her how loved she is. That she’s here on this Earth for a reason and is my daughter on purpose. I told her that I wasn’t whole until I had her. Okay so I’m aware she is 7 months old, but I felt I needed to make sure to say it out-loud. She responded with her “ahhhh, eehhh”.
We find out the time of the surgery tomorrow. Don’t ya love the notice? 24 hours to adjust for something like this. For mothers who need to plan just to survive a day, this is torture. Hopefully it’s super early. Not being able to feed her 9 hours prior feels like a rough journey in and of itself.
So I ask you my friends… when you wake up on Thursday morning, whatever time, say a prayer for us. For strength and love and peace. For small reminders that we are strong enough. For bug.
Bug laughing. There is NO. Greater. Sound.
In all the world.
My heart is so full when I watch this clip from a long video of her giggling at Kingsley.
The sisterhood of mommas is something I kinda sorta knew existed. Before we had Landon and I was around y’all, you’d speak in your “momma language.” One where you talked about little maestro, Sophie, Dr. Sears, the 5 s’s and Baby Einstein. I would nod and smile with y’all without knowing one lick about what was being said. I remember several times thinking “I’ll still speak the same language when I have a baby, won’t I?” It was like when I was in Italy and I pretended to understand a shop woman when she spoke Italian to me b/c I was so proud to look cool enough to be Italian to her.
I would then hear “you’ll understand when you become a momma.” Well y’all… you’re right. The sisterhood of mommas is the most inclusive group in the world. No matter what your background is, where you’re from, what you believe, the sisterhood accepts you. Mommas love to meet other mommas. We instantly get each other. You feel connected, accepted and understood maybe for the first time in a while. We commend each other for wearing anything other than yoga pants and cotton t-shirts. A silk shirt? A dress? We’ll hug you and compliment you like you’re going to the Oscars.
When I had Landon, the love I felt from my friends was inspirational and moving. All of you, including those without kiddos, were patient, understanding and your love was huge. The sisterhood also rose up with their own love and compassion. I’ve told y’all before about the amazing friend from college who has three kiddos (an older daughter and then twins!!) who read my first entry about what we were going through and she packed up and shipped off SOOOO many beautiful clothes. She sent me the nice pjs, the smocked and embroidered bubble outfits, the hand knit gown and the gorgeous white with ribbons romper. And more. It was a huuuge box. Stuart’s gift to me was like a huge welcome sign for the sisterhood of mommas. I hadn’t talked to her in years but she just felt that I needed that box. I did… it healed a little part of me.
Y’all give advice to any needy mother at all hours of the night on facebook. You call and email when you can tell that a fellow momma needs you. And we become friends instantly with total strangers b/c our kids deeply link us somehow. If you check out at a store with baby food - the cashier with three littles at home smiles knowingly and tells you about the unknown sale on Plum Organic mango pouches.
And then there are the special mommas. The incredible mommas like Brooke who champions her incredible son and has so much love for mommas like me. There are the mommas I hear from through this blog whose children have TCS or Down Syndrome or something else. When we email I feel like I’ve known all of you for years. My Clarke moms hug and comfort me when I need it; sending emails after a hard group session to say they are thinking about me. I love all of you. I am so proud to be part of our sisterhood.
When you’re younger- high school, college and sometimes in your 20’s- we women are competitive. Sometimes we steal boyfriends, talk about each other or worse. We’re catty. And it’s sad. The good news with this storyline is that when we’re older and have our littles…. it changes. We have something so much bigger than us to focus on and we find love for each other, especially in the darkest hours. The sisterhood of mommas welcomes us and then we’re a part of each other. It’s awesome.
What’s more is that it’s only been 7 months for me….we have a lifetime together us mommas. Thank you for being there for me. For loving me like you do when I need it most and sending so many amazing emails, texts, gifts of love. Your support, prayers and empathy for us has been life changing.
Landon and I both love y’all back.
Other than speech therapy, we just took our first major step in our new journey. We scheduled her first surgery. To be clear.. it’s the first of maybe three surgeries. It’s her strabismus surgery for her eye, where the doctor will move the muscles in her slower eye. So…I’m adapting. If this was an isolated issue and the only surgery, I think I’d have the same excited attitude my little world seems to have. I know this will benefit her in great ways. And doing it now is best for her based on her “numbers” and tests. I am just having a hard time with it. It’s that familiar reminder that our new journey includes all this yucky stuff like hospitals.
So…warrior mommas that I know and love… how did you prep and plan for your baby’s surgery(ies)?? How do you adapt to the thought of your little one under anesthesia? I think of many of you incredible women who kept a brave face and even smiled in pictures from the hospital. How did you do that? This is like my starter surgery and test. We will have much more invasive and scary surgeries in the future. Now is the time to start cultivating that elusive glass half full attitude.
I have to be completely honest though, I feel myself cracking lately. I’m not adapting well. I don’t even know if I can call it lately either…feels like the past few months. I’m edgy, irritable and easily set off at home. Not all the time but it’s frequent enough. I feel like I’m letting Bo down as a wife. I push through the stress at work and do all I can but I feel all the time like I’m letting people down there also. The only person I completely “show up” for right now is Landon. Priority…yes. But I want to be myself in all the areas of my life…my best self. I worry as I add things to my juggling act, I won’t be able to truly have it all. Are other women as scared of this as I am? Are there other marriages that got dinged by baby or babies? We’ve certainly turned a great new corner, hubby and I and are on the right path. But like Anne-Marie Slaughter in The Atlantic wrote… women can’t really have it all like we thought we could. Or can they? How do we balance being the best mom, the best wife, the best coworker and still have time to fit into our skinny jeans? I think for me it’s all about the slow adaptation. Being patient that I’m going to have good and bad days at doing all of this. I plan to celebrate the good ones and learn from the bad. It’s a simple plan…it’s a start at least.
Today I’m focused on a few things. Finish the list I made for work today, value Bo for his incredible positivity coming out of the doctor this morning…I’d be a puddle without it, and the last one is to play and snuggle with Landon..SO easy. It’s big load for one day and I will just be proud to have lived it. To have adapted a little more.
The surgery for inquiring minds will be April 18th. The 2nd one (which happens in like 90% of the cases) will be at least three months later. The amazing part about the 18th? My entire family including my grandmother arrives that day. My nanny is coming up for her 91st bday and her gift is to meet Landon. Yep…God does work in wonderful and mysterious ways.
Love to y’all!
Today is another specialist day. It’s microtia repair day. Microtia is essentially an underdeveloped ear. So we will plan and assess when they will do surgery to give her ears. What type of surgery. What type of ears. When in her life? How many surgeries? Some parents might think this is kind of a cool day… I know Bo does.
I hate these days. I’m not sure I will ever look forward to them or be able to properly articulate why I hate them. The interesting part is that I also hate when people try to cheer me up about them. It just is what it is.
My perfect dumpling is off to another doctor, another waiting room, another chance to study what’s wrong and what we’ll fix. Yeah yeah yeah… she doesn’t know what’s going on now and she’ll just know it’s part of her routine when she’s older. She might not care.
But for momma….I hate these days.
Bug is sitting in Bo’s lap staring at me with a huge gummy grin. She doesn’t know. She knows that I’ll squeeze her a little too tight when in the waiting room and perform my best “together mom” routine for the lineup of doctors. Then I’ll probably come home and be teary. That’s the routine.
Okay signing off for some work details and actually getting out of my yoga pants and lululemon sweatshirt to put actual clothes on.
Hang on tight while we grab the next page