On Top of the World

Top of the Hill in Ogunquit Beach, ME

This is my first submission to The Life of B Photo Challenge. This quarter’s “April Squares” challenge is a celebration of ‘Tops’, so as a nice transition from her January ‘Light’ challenge, I’m entering my Hilltop Sunrise photo taken from Marginal Way in gorgeous Ogunquit, Maine. Ahhh, how I would love to be sitting on that bench with a cup of coffee right now! This particular weekend in March, we were on a college road trip to visit a first choice university up North. It was just after the bomb cyclone had settled off the coast of Cape Cod, so the ocean was incredibly powerful…

...and on Top of the Rocks!

When you experience that kind of power in nature, it’s a reminder that there is something… rather SomeONE greater than all of us, who created this universe and is able to handle all that we cannot control… especially now in these days of uncertainty.

I especially love the third picture in this challenge with the waves crashing against the rocks and my youngest daughter is standing in the front confidently, almost defiantly… unmoved by the thunderous surf. To fully appreciate the significance of this image, you have to understand that this has been a particularly tough season for my daughter. In January 2017, she sustained a concussion during a normal PE class at school. Another student threw a basketball across the gym, that struck her on the side of the head, and dramatically changed the course of her teen years. What we thought would resolve in a few weeks, evolved into considerable loss of her vision for the next six months. Our world completely shifted as I dropped everything to adapt all of her lessons to her academic needs at home with the help of a home teacher assigned by the county, just so we could get her across her academic finish line. Once her vision returned that summer, following intensive medical therapies and treatments by teams of doctors, nurses and various therapists, at Sinai Hospital and Kennedy Krieger Institute, her daily migraine headaches began to intensify. Finally in June 2018, after 3 days on ‘migraine cocktail’ IV’s at Johns Hopkins Pediatric Hospital, she experienced her first 24 hours of migraine relief in 17 months… Since then, she has continued treatment at Hopkins, Krieger and Mt. Washington Pediatric Hospital to try to navigate her new life in the aftermath of her traumatic brain injury… still pushing through and managing the pain, still looking for solutions.

As her mother and her primary caretaker, you can imagine the range of emotions I have experienced. So in an odd way, with all that has recently rocked our world, I almost feel like I was prepared for this COVID-19 wave to hit. I don’t mean to downplay the seriousness or the impact this virus has had on individuals, our country or our world. I have simply learned how to roll with the challenges of unexpected happenings and unfolding circumstances. This is where we are… and we are all in it together. The sun will rise tomorrow, and we will start over with the new day, hopefully moving forward. And if we need to stop to take a breath, it’s okay…. take a moment… just don’t live there, and I mean that with love in my heart… Put on your fuzzy pajamas, eat a bucket of popcorn while you watch a movie that makes you laugh until you cry, then let it out, Sister… or Brother!… Let the rain… fall… dowwnnn… Then without touching your face with your ungloved hands, wipe your eyes with a tissue or your sleeve if you’ve run out of tissue… run a comb through your hair or polish that shine, slap on your good looks and step into the next day! You can do this… We all can do this… We need to do this for each other.

Sending you so much love, beautiful sunrises & healing prayers! XO

16 thoughts on “On Top of the World”

      1. I didn’t get to see the art gallery while I was there. Many of the galleries & shops were closed. I’ll have to put that on our list for our next visit. We were finally able to get into Abacus, which was beautiful & my daughter loves the mac ‘n cheese at Bessie’s. The Village Food Market was a surprising gem, too – they make a great lobster roll!

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  1. I know how migraines dictate your life as I suffer from them as well. My prayers go out to you and your daughter. To have them consistently for so long (17 months) breaks my heart for all of you. I’m praying she will get to where she has full time relief. Hope is that one day you will both look back and smile!

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    1. I missed your message earlier, Lisa – I’m just getting the hang of where to find everything – lol – I’m sorry to hear that you struggle w/migraines, as well. This has been a particularly difficult week for her. She is only allowed 3 days on the ‘migraine cocktail’ med treatment to try to break the most intense headaches, to avoid organ damage & it just didn’t work this time. The online school work has been hard on her with all the extra screen time so we will have to work out a plan to get her through this semester. Pre-COVID we would be taking her to the hospital for IV treatment now that she has gone 4 days without a break, but we discussed it & agreed that the risk outweighs the benefit. Hopkins is in Baltimore which is a hotspot right now. It’s so hard to watch her suffer through it. She can only sleep, wear her halo ice pack & stay hydrated while we pray that it will break soon. Thank you for your prayers – we’ll take all that she can get! ❤

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      1. I’m glad you found me. I’m finding that mine are onset with the weather in a lot cases. I had some ice pic migraines last night as these storms began heading towards Florida. Hurricane season is the worst because it seems to have something to do with the low pressure. I’m so sorry she is having a hard times these days. My heart goes out to her and you. So is there anyway you could have an IV pump delivered to the house and have a nurse come to the house in hazmat gear? When I was pregnant with my last child (she’s 27 now), i went into labor week 24. I was on an IV pump for 13 weeks that I learned to change out myself. It fed my meds to keep me from going into labor. Not sure if that’s an option. I will continue to keep her in my prayers. 🙏🏻💕

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      2. Oh, Lisa, that sounds miserable… prayers for you, too! Yes, the low pressure definitely affects her pain, as well. Thank you for the ideas, but it probably would not be worth the effort for the IV pump home treatments either. We usually go through a whole process of whether or not she wants to go to the hospital – typically determined by the duration of any given migraine. The downside is that she may be on IV’s for 1 – 3 days to break the migraine, she will have relief for up to 72 hours and then it comes back with a vengeance, typically more intensely than it started… it’s a vicious cycle! Once she turns 18, we are hoping she will have a better selection of meds that she can try. We have filled a whole page of the treatments she has tried up to this point! There was a trial-size med that one of the out-of-network doctors tried her on that showed some promise but insurance wouldn’t cover it due to her age & it would have cost over $2000/month out of pocket! Sadly, all of the meds only treat the pain, but won’t heal her. Surgery is risky and there is no guarantee it will be effective. So we pray, and we wait… and pray some more. Sounds like you know the drill… Peace, prayers & pain-free days & nights your way! ❤

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    1. Thanks so much… yes, the scary part has passed, now she is just trying to learn how to manage the pain until a better treatment plan is discovered. It’s agonizing to watch her suffer, but her courage & spirit has been such an inspiration to me. 🙂

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