Socks and Big Girl Panties.

Yesterday I had a meeting with my oldest child’s school counselor and the county audiologist. It was slated to be a quick meeting, an annual review of her 504 plan. 504 plans are in place so that she gets preferential seating (and other similar things) in class in order to maximize her listening environment in class. We went over the routine questions, and confirmed that her ability to hear and learn in her classroom setting has gone extremely well this year. We continued on to discuss medical and safety plans. Suddenly, a quick annual review turned into a counseling and therapy session for me.

Most people who know me know that I’m pretty laid back. I enjoy being silly and have seemingly endless energy. But in regards to life and circumstances, I don’t get riled up easily. I don’t worry unnecessarily. I rarely worry at all. I was raised to take what life handed me and either do something with it or get over it. I was taught to be grateful for what I had, to not whine and complain, and if something didn’t go my way- TOUGH COOKIES. I also learned to do things myself. My grandmother had a saying, and that was to “pull up your socks and be somebody.” In other words, put your big girl panties on.

When Mecaden was born, I had less than a day of innocent newborn bliss. I remember her first night with me… I hadn’t slept the night before due to contractions, labored all day, had her late in the evening, and pushed for over an hour. It didn’t matter how exhausted I was. I gave birth to my (surprise) baby girl and all I could do was stare at her. I literally stayed up the entire night and stared at her. My 22 year old self was just in complete shock and awe at this incredibly breathtaking baby girl. All of God’s grace in one sweet little face. I didn’t care if I ever slept again.

The next afternoon, the nurse wheeled her squeaky bassinet back into my room from a nursery assessment. I was about to reach in and scoop up my darling girl when the nurse turned to leave and nonchalantly said over her shoulder, “She had her Hep B shot and she didn’t pass her hearing screening.” And the door swung closed behind her. I just froze. Hearing screening? What hearing screening? She didn’t pass? What does that mean? I literally don’t remember what happened from then until we were discharged the next day. Not one thing. Two weeks later, she didn’t pass an outpatient hearing screening. Ten weeks later she didn’t pass an ABR hearing test at UNC. Our baby was deaf.

I cried. I cried hard. Really hard. But after some wrestling with God and His peace settling into my heart, it wasn’t long before I was pulling up my socks and putting my big girl panties on. I couldn’t change the situation, but I was determined to do everything I could to ensure my daughter would have a normal life- hearing or not. She was fitted for teenie tiny hearing aids that same day of her “No Response ABR” test. From then on we dove head first into Auditory-Verbal Speech Therapy. Parent and child therapy sessions weekly that taught me how to teach her to speak through listening. The hearing aids didn’t help her at all, and the day before she turned one, she got her first cochlear implant. We continued speech therapy- the weekly sessions were just a drop in the bucket of all the speech therapy we did with her. For years I narrated everything. “Open the cabinet! Take the glass out. Put it on the counter. Open the fridge. Take the milk out. Take the lid off. Pour the milk. Put the lid on. Put the milk in the fridge. Close the door.” That was just to pour a cup of milk! Input. Emphasis. Input. Emphasis. Sing-song-y. Constantly. For everything. For years. There is no wonder why she never stops talking now.

At the park, I hovered. It was not in my personality to do so. But it wasn’t just any toddler who had to learn how to climb. It wasn’t just any child who falls and cries. If she fell and hit her head, she could easily damage her internal component of her cochlear implants, and we would be looking at another surgery. If the slide was too static-y it could wipe out her program channel and settings on her implants. Not to mention, I was still inputting. “Go up up up the stairs. Down the slide. Weeeeee!” Inputting sound was woven into every single thing. I never could go to the playground and just chat with other moms while we watched our kids play. I was the mom climbing up into the equipment and ignoring my mom friends.

Mecaden is almost nine now. I don’t have to narrate everything anymore. I don’t have to hover at the park. She scares the crap out of me with how she flips over the bars, hair and legs flying, sticking her landing as she lets go. My concern for her safety has left the playground and has found new fears. Emergencies. My friends giggle over this. I don’t blame them. It feels silly. I have a fear of her class evacuating for a fire, or running for cover inside the building during a tornado warning. I know they practice drills so everyone stays calm if it really happens. But my brain goes to the worst case scenario, and all I can think about is what if in the chaos, she gets bumped, her processors fall to the ground, she stops and looks for them… by the time she hopefully finds them not stepped on and broken, her class is gone. She doesn’t know where they went because the alarm is so loud and suddenly she is by herself. Or what if she can’t find her processors, or they get stepped on and broken, and she can’t hear instructions, or a comforting teacher’s words during a frightening event? I can’t tell you how many times my fears have pushed me to picking her up from school on days there are tornado watches. I can’t handle thinking about her disoriented, scared and confused, and not being able to hear.

I opened up and shared this at the 504 meeting today. I was a little nervous that the counselor was going to reprimand me for taking my kids out of school based on a silly fear that likely won’t ever come true. Instead, she and the audiologist both affirmed and encouraged me. Not to keep taking her out of school, but they validated my fears. They validated my desire to protect my little girl. They brought up how it is another stage of the grief cycle. It’s a different grief than when I first found out she was deaf. It’s a different fear than when she was put under for major surgery. It’s a different sadness than when she first cried about not being able to hear while she swam. But it is grief.

I cried. I cried hard. I opened up and shared that I have had a lot of hard things in my life. (Actually, I told them I have been through a lot of crap.) I shared that I’m not used to worrying. I’m not used to giving into fear. I’m used to sucking it up and moving on. I’m used to taking whatever hand I am dealt, and making the most of it. I’m used to being strong. I’m used to pulling up my socks and putting my big girl panties on. The counselor gently said, “It sounds like you have a lot of baggage. You’re used to being so strong- for you and for other people. And being in control of your emotions and not letting things get to you. It seems like you let all of your fears and worries come through in this one area- Mecaden’s hearing loss and safety. It’s like it’s the one place you’ll allow yourself to express it.” I cried and admitted, “Sometimes I’m just tired of pulling my socks up.” And I cried hard.

I wiped my eyes, and cleared my throat, and said “I don’t like to whine or complain. I am so blessed. I have so much to be thankful for.” The counselor gently offered again, “Yes. But no matter how much we are thankful for, we all experience hard things. And it’s okay for it to be hard. It’s okay to hurt. You need to give yourself grace and let your socks sag sometimes.” I cried again.

I cannot tell you how much weight was lifted from my shoulders. She helped me pull layers back on issues I didn’t realize I had. Here I am, seeing how so many others go through hard times and I try to do everything in my power to encourage them to give themselves grace. I tell people all the time that sometimes life sucks, and it’s okay to hurt. It’s okay to cry, and to cry hard. I didn’t realize all this time I have been bottling up my emotions about so many circumstances. I mean, I’m not made of stone. I typically cry hard initially… but then I read and speak Truth into my circumstances, and I pull up my socks and move on. I suppose all this time, I felt like once I pull my socks up, they have to stay up. No use in crying over spilled milk, right?

Wrong.

Sometimes its okay to cry over spilt milk. No, you can’t un-spill it. It is already done. But you know what? It stinks that you spilled it. It stinks that it is wasted. And don’t get me started on crying over spilled breastmilk (not sorry, fellas. not sorry.).  So much work, down the drain. Or on the floor. Or all over the fridge.

I’m pretty sure I could speak in strictly idioms, being from the south and all. I digress. I just wanted to share what has been going on in my trench. And I really want to encourage you to give yourself grace. There are really, really hard things in life. Remember: the reason these things are so hard is because we were never meant to experience them. It is okay to cry. It is okay to cry hard. It is okay to wrestle with God over it. It is okay to wish these things were not happening. Even Jesus cried out to God in the Garden of Gethsemane, “My Father, if it be possible, let this cup pass from me” (Matthew 26:39). He was referring to his upcoming brutal death on the cross. He knew it was coming, He knew it would hurt. He knew the only way to bring salvation to man was if He died for and instead of us. He understands your pain. He understands your fears. And do you know that He collects every tear of yours that falls (Psalm 56:8)? He is there. Even when no one else is. He is there, and knows ours prayers even when we cannot form them (Romans 8:26). It’s okay to let your socks sag. You don’t have to have it all together, all the time.

And when the time is right, you can pull your socks up and put your big girl panties on. But do so in the strength and grace of the Lord. When life hands you lemons, you can make lemonade. But unless you have water and sugar, your lemonade is going to suck. You can wipe your face and toughen up and move on when life is hard… but unless you face it with help from the Lord, you’re going to take a beating from life again before you know it. Don’t misunderstand me- just because you do things in the Lord’s strength doesn’t mean you’re going to perfect it and it will be easy. You’re human, and you will get knocked down again. But if you’re walking with the Lord through life, His grace will catch you when you fall.

From my trench to yours,

Emily

 

Photo Credit: allthe2048.com

 

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Marco Polo.

It has taken me a week to even write this. Every time I start, I am at a complete loss for words. It is rare for anything to leave me entirely speechless.

A few years ago, we had to turn down multiple birthday party invitations for my oldest, Mecaden. They were pool parties. Yes, she can swim. Yes, she wanted to go. The only problem- all of her friends from school only know her as hearing. They know she was born deaf and has cochlear implants. They know when she takes them off she can’t hear anything. But they have never had to experience her without her “ears”. We go to the pool and to the beach every year- her external processors cannot get wet, so they go in a case to stay away from any water. She runs off to jump in, and often times other little girls want to befriend Mecaden. I have to go over and communicate to both of them, explaining that Mecaden can’t hear, and telling Mecaden what the little girl is saying (Mecaden used to be able to read anyone’s lips, now she really can only read mine). Sometimes its too confusing so the other children will go on and find someone else to play with. Other times (many times) the other children will try their hardest in attempting to play with Mecaden and make her feel included. The more children, the harder that is to achieve. They start squealing and splashing and hollering, “Let’s all see how far we can jump from the side!”… she can hang in that situation if I tell her what’s going on. Then someone pipes up, “Let’s play Marco Polo!!” Well, at that point she is done. She has to sit out. Not because she won’t attempt to play, it’s because other children simply don’t understand and don’t have the patience to work with her hearing loss. Truly, it is never out of unkindness that these children move on and play without her. They just don’t understand. But I cannot tell you how it kills me to see her trying to keep up, the kids swimming away after another new game, and leaving her bobbing in the water and slowly making her way to the side by herself. She just sits there and watches them, wishing.

For years this didn’t seem to bother her. Mostly, because we only went swimming with friends. Friends she has grown up with and they have always known about, accepted, and worked with her hearing loss. It’s not new or different to them. It’s normal. No one ever swam away from her. Since starting elementary school, it has started affecting her. After a few turned down invitations, she sighed and told me, “I just wish I could hear in the water. It’s not fair.” I decided to fight my own pain in hearing that, and mustered up all the chippiness I could, and forced a smile… “I know, Mecaden. But remember, when you get to Heaven, you will be able to hear without implants all the time!” Normally, that worked and encouraged her. This time, however, she burst into tears and said, “But I don’t wanna wait for Heaven to hear!” I cried, too, and just wrapped my arms around her and told her I was sorry. My heart shattered. My little girl can’t play Marco Polo like all these other children, like I did as a little girl. She can’t even tuck her hair behind her ears because of the processors that take up so much room, not to mention the arms of her glasses that have to fit back there somehow.

Sometimes the broken things threaten to destroy us in life. Sometimes it is hard to see the beautiful in the broken. Sometimes its hard to wait until Heaven.

When Mecaden recently got glasses, I decided to submit to insurance a request for new implant processors. These are just different external components, no surgery required. An all-in-one unit called Rondo. It would take all of the pieces that go on/around/behind her ears and be in one mostly-round unit that magnetizes right where her internal component is. It would mean she could wear her glasses much more comfortably. I didn’t think insurance would cover it… but I asked our friends, family, and Sunday School class to pray big prayers. God showed up in big ways.

The Rondos were approved in full (!!!) and I learned they would come with completely water proof covers. As in, MY GIRL CAN PLAY MARCO POLO THIS SUMMER. I cried on the phone with our audiologist. You would think, almost 9 years into this journey, you can get a hold of yourself and not cry anymore. So not true. I had to hang up and call back. We wrote a message for Mecaden to read when Todd got home from work. She opened it and read “Mecaden, you are getting new cochlear implant processors. That means this summer you will be able to hear while you swim.” Mecaden has this built-in gauge of excitement on her face. It’s her single dimple on her right cheek. The deeper it gets, the more excited she is. I have never seen her dimple that deep. Pure. Joy.

Last Monday, I took Mecaden to her cochlear implant/audiology clinic. In no time at all, her Rondos were mapped and ready to go. A little bit of sound booth testing, some tweaking, a little more testing and we were out the door. A couple hours later, we made a stop at the optical dispensary where she got her glasses. She needed the arms adjusted to fit her ears better since she no longer had any processors on them to hug them to her head. Mecaden hopped out of the car and I stopped her so I could take a picture. I told her to pull her hair back so I could see her new processors and suddenly it dawned on her. “Wait. You mean I can put my hair behind my ears?!” The rush of emotions I experienced was unexpected. I grinned and said, “YES, you can!!!!” And with that, I watched as my little girl tucked her hair behind her ear for the very first time, and a grin spread across her face. That deep dimple appeared again.

I am thankful for our daughter’s journey. If you asked me, I would tell you that of course I wish she could hear without implants. But she doesn’t and she won’t until Heaven. And God has taught me more about Him and given me more joy through brokenness than I feel I would have otherwise. Timothy Keller said that “God shakes our confidence in our earthly life so that we can yearn for our heavenly life, where our joy is truly unshakable and where our wailing will be turned into dancing.” That is one of the hardest things to be thankful for… broken things to remind me of the day when there will be no broken things. And while we wait, God blesses us richly with little tastes of what that day will be like. Things like waterproof cochlear implant covers and impending games of Marco Polo, and simple things like your daughter being able to tuck her hair behind her ears. I encourage you to look for the beauty amidst the broken. Sometimes its not as grandiose and obvious as the broken. But it is there. The tiniest reflections of the incredible goodness and kindness of God.

From my trench to yours,

Emily