What the frick?

Of course it would happen to me. Why wouldn’t it? Bell’s Palsy. Ugh.

To be clear this is NOT a pity post. Shitty things happen in life and you have to find your way through them. But this one is seriously just pissing me off. I️ don’t have the time nor do I️ deserve to have to deal with a half frozen face! Ok so maybe it is a bit of a pity party. Maybe. Just a small one. Indulge me for just a minute.

So seriously not much gets to me. Like really, there isn’t a whole lot in life that bothers me or really impacts my life in a meaningful way that actually slows me down. This has done just that. I am impacted in ways I have never been impacted before. The paralysis of half of my face has effected every part of my life. My speech, my eating, drinking, socialization, confidence, personal hygiene, sight, hearing, productivity, etc. You name it, I feel the impact. In all honesty this is the first medical issue I have faced that has truly impacted all areas of my life.

In all honesty this Bell’s palsy has been brutal. I have for the first time in my career felt inferior and less than confident in myself. Mostly due to the physical appearance that has resulted from my medical condition. I am self-conscious of my face when I speak … wondering whether or not the paralysis in my face is as noticeable to others as it feels to me. The mental and social insecurities from this medical diagnosis has had a rippling effect on my life.

I have had to make adjustments in the way I eat and drink. My sight is different out of each eye. My hearing is different out of each ear. My taste is all but gone. My smile is one-sided. When I laugh only half of my face reacts which then inhibits my laughter out of social insecurities. My left eye is constantly “crying” which leads to red eyes and dry skin. In all it is a miserable diagnosis that impacts all areas of my life and causes me to find different ways to adjust. It all it sucks. It’s not fair. I don’t deserve it.

In my 32 years of life I have faced heart surgery, chronic migraines, asthma, the death of a child, and colitis yet none of those things have impacted me in such a deep way as this facial paralysis has. In a way it has made me reflect on myself and what is important to me. It has made me think about why I have struggled so hard with this paralysis. All of those other ailments I had previously, from the migraine to the colitis to the death, I could hide all of those. So even when I was having a bad day I could bury them beneath a smile and just push through. With the paralysis that is not an option. My issues are front and center for all to see whether I like it or not. That’s tough. I have no control. I just have to deal and find a way through it. I have to find a way to manage the medical and social aspect of my diagnosis. I have to learn to live with the suck. Because this sucks. Ain’t no other way around it but straight through it…this sucks.

That being said I had one night where I allowed myself about 20 minutes to wallow in my suck. I vented to my husband about why it wasn’t fair that it had to be me that got Bell’s palsy. Even went so far as to tell him that it was crap that I got it and not him. Like it would make it any better if it were him but that was my truth in that moment. In that moment it wasn’t fair that it was ME that got Bell’s palsy. It that moment it wasn’t fair that I had to deal with yet another life challenge. In that moment I was having a pity party. I think that might have been my first pity party EVER. And probably my last. Hopefully my last. Because pity party’s are no fun but sometimes they are necessary. Sometimes you have to embrace the suck so you can stand up and march on. You have to acknowledge the shit that is being thrown your way and then have the fortitude to say “I am stronger than this day. I will overcome this hurdle. I will fight. I am a warrior.” It’s not always easy and sometimes, I guess, a pity party is needed. A pity party is needed so you have the strength to push through. You know what my husbands response to my self-wallowing was? He rubbed my back and said “babe, it could have been worse. You could have had a stroke.” He was right. It could have been worse. Much, much worse. Pity party over.

Someone said to me recently, “I admire the optimism you and your husband have.” No lie, that is a direct quote. Someone actually admires the optimism Alex and I have. πŸ˜‚πŸ˜‚ That is a remarkable thing. That simple observation astounds me because Alex and I are not naturally optimistic people. We are realistic and work hard but by no means are we optimists. But then again maybe we are. I don’t know. I think maybe people see us as optimistic because they know our story. Or part of our story anyway. They know that we had a child that died and so anything after that is perceived as optimism. On the other hand maybe we are optimists. I don’t know. What I do know is that no matter what we all get one life on this earth. Just one…that’s it…one life to make the most of. One life to make a difference. One life to make an impact. One life to leave a legacy. I think about my life. What have I done that makes an impact? What have I don’t to better this world for my children? My answers to those questions right now is not enough. I haven’t done enough. So Bell’s palsy or not I’ve got to up my game. It’s time to make an impact. Time to leave a legacy. Time to make a difference. How I don’t know but it will come to me. I have faith. It will come. In the meantime I will persevere. I will be the example for my children. I will show them that no matter what challenges are thrown your way you find a way through. You stand up and march on.

#embracethesuck

#standup

#bethechange

#marchon

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My Grief Journey

How do you survive without your daughter? Another grieving mother asked me that question and honestly I don’t have an answer. Β Not a simple answer anyway. As the 2 year anniversary of Reagan’s death approaches I find myself questioning how I have been able to move through these last two years without her. The only thing I know for sure is that I have to do it day by day. I can’t focus on the weeks, months, or years. Focus on one day at a time. Try to make the day one that Reagan would be proud of. Find joy in each day just as she did. Some days though just suck. There’s no other way around it. Lately the days suck because I feel guilty for never really being “depressed” (I use that term loosely). Let me explain more what I mean by that.

Everyone reacts differently to challenges and grief in their life. Before Reagan died I heard that multiple times. When Reagan died a couple of people told us we all would grieve in different ways. I get it now. I mean I really get it. It’s difficult to deal with though. I have grieved by trying to find the joy each day. I went back to work full time 3 weeks after Reagan died and haven’t stopped since. I keep myself focused and busy. Lately I’ve been questioning myself because i wonder how is it possible that I have been able to do that for almost 2 years and not have a breakdown. How have I been able to get up each day and keep going? There must be something wrong with me.

I know in my head that nothing’s wrong with me (at least I hope not πŸ˜‰) but sometimes I feel like there must be something missing if I haven’t had days that I couldn’t get out of bed. Surely that means something is amiss. I don’t know. Maybe there is something wrong.

I shared in a post a long while ago about a story that was shared with me shortly after Reagan’s passing. Another mother who had also lost her child several years ago shared that she kept going for four years. FOUR YEARS! And then she couldn’t go anymore. She broke down. She fell apart. To this day I remember that moment that I heard that story so vividly. I remember because I could see myself in that mother. I remember it because it scared me shitless. In that moment and to this day I am terrified that I am going to have the same experience. I’m going to keep going and then one day, poof! Everything will stop. I won’t be able to go anymore.

The crazy thing is that part of me hopes I never get to that point. The other part wonders if that would make me feel better about the way I am grieving. Like for some reason if I can’t go anymore that would make my grief more valid. I’m telling you grief this deep will make a person crazy. It just tortures you in ways you never imagined possible. Because seriously whether or not I break down or not does not make my grief any less or any more real. My grief process is my grief process. Learning how to accept that for myself is a challenge I am currently working through. As I am writing this I am coming to the realization that this is it. I need to focus on accepting my grief journey as it is. I have been so focused on others and trying to make sure I accept the way they grieve that I haven’t allowed for acceptance of my own journey.

So to the grieving mother that asked me how I keep going I don’t know. What I would say to you is to ensure that you accept your own grief process. Find a way to make each day better than the last. The journey is long and difficult but you can do it. You have the strength of an angel with you. Don’t compare your journey or grief process to mine or anyone else. We all share a common thread but our paths are different. That is ok.

*PS I don’t share this with y’all because I want sympathy or need reassurance that my process is okay. I write and share because it is helpful to me and hopefully helpful for someone else. I try to be as honest as possible when I write but please know I am not looking for you to feel sorry for me.

#hugsandfistbumps

#mostlyfistbumps

Until next time.

M

Fly with Me

I'm just going to leave this right here for you. Take a few minutes and just listen. Go to a quiet space, close your eyes, and just listen.

https://m.youtube.com/watch?v=4QoSxuaTCvQ

What do you think about when you hear this song? What do you feel? Sometimes music doesn't need words to make you feel something.

For me, this song makes me think about Reagan flying high above us, flying beside us, flying all around us. It comforts me. Makes me feel like it will all be okay. For me this song lifts me up. Lifts me high in the sky. Lifts me up so I can fly with Reagan.

I hope you enjoyed it.

#flywithus
#musicispowerful
#hugsandfistbumps
#youaremyfightsong

Until next time.

Maggie

Dear Reagan

Reagan,

I miss you so much. I look at your little sister and wish so deeply to see the two of you interact. I yearn for it. When you were born I thought you might be our last child. I wasn't sure but I thought we might be done. One of the things that saddened me was that you would not have a sister. You see, I have two sisters, so I know the special bond that sisters share and I wanted you to have that. As you grew and I watched you and Aidan together I quickly realized that I was wrong to feel that way. It didn't matter that you didn't have a sister because you had Aidan, your big brubbers, as you called him. The bond you two have is incredible. Even tonight Aidan told us that the only girls he cares about are his sisters, Reagan and Ryan. I know you would love her and snuggle on her. It pains me that she won't get to meet you. I wonder what it will be like to raise a child that doesn't know or feel the deep grief like your dad, brother, and I do. Because inevitably it will be different for Ryan. Of course she will know all about you. We will look at photos of you, watch your crazy videos, and share stories but for her it will be different. I pray that I find the right words to express to her what a fun spirit you had and instill that in her. Ryan's personality is starting to emerge as she grows and she reminds me of you at times. She sometimes looks at you with her little nose wrinkled up just like you did. She has absolutely no patience and wants what she wants when she wants it. Sound familiar? Haha 😂 You would get such a kick out of her! I hope she has some of your fiery little independent spirit!

I know that a piece of you is deeply imbedded into the souls of your dad, brother, and me. Hopefully we can share some of that with your little sister. You truly were a remarkable human being Reagan Grace. You truly had just the right balance of love in your heart, fire in your spirit, and a feisty little attitude. I have truly never met another individual like you. The world is better for having had you in it. I just wish we had more time with you. Thank you for being our sunshine.

Love you deeply,
Mom

The Ripple of Fear

I like to be in control. I need to be in control. Reagan’s illness and death has made that challenging for me at times.  Not only do we not know for certain what illness caused Reagan’s death we also don’t know how she got sick.  This lack of knowledge of the what and why surrounding her death creates fear in me for my other children. Like when a drop of rain hits a body of water there is a ripple effect. Learning to manage the fear and not being in control is one of the ripples. 


Ryan started daycare last month when I returned to the office full time. She is our first baby to go to daycare before she was a toddler so this is new territory for us. She is at a great school and her teachers are excellent but let’s face it daycares are where you send your kids to get sick! 😷 lol 

In all seriousness she has come down with a stomach virus that is causing fevers and throwing up. In my head I knew to expect these bouts of illness but man is it tough to manage my fear of what could happen. My head just starts running in a million different directions and playing out these “what if” scenarios. What if this isn’t just a stomach virus?  What if this turns into something more serious? What if I need to take her to the same ER that we took Reagan too?  What if my kids are genetically predisposed to some illness that we don’t know about? What if I can’t deal with it? That might be the biggest ripple…the fear that I might not be able to deal with returning to the same ER or hospital if one of my kids needed it. The fear that I might not come out of another devastating life event. The fear that our family might not survive. 

Neither one of my other kids ever got sick as a baby. Outside of maybe a minor cold or two they were very healthy. Really, that rings true not just for when they were babies but as kids too. Until Reagan got sick and was hospitalized they just didn’t get sick. That’s scary. To have kids that generally escape the virus going around and then have what happened to Reagan happen…it’s scary. The fact that we don’t really, truly know what happened is even scarier.  The ripple of fear is a heavy burden to carry. 

As I write this blog it is 4:30am and I am laying in bed with Ryan sleeping on my chest. Hoping and praying her fever breaks and comes down. I am counting down the minutes until I have to get up and get ready to go to work. Because I have to go to work tomorrow. I have to find a way to stuff the fear down inside, to park it for now, so I can do my “other” job, at work. I do NOT want to go to work but I have to. Finding the balance between the needs of my kids, my family, and my career is difficult sometimes. This is true for all parents I imagine.  But that is a whole other blog post entirely! πŸ˜‚πŸ˜‚ Knowing that in 2 hours I need to be on my way in to work or already at work sucks right now. As a mother I feel compelled to be the one to care for my kids when they are sick. My ripple of fear only compounds this need. The reality is that I can’t always be the one because there has to be a balance. The reality is that this is in all likelihood a virus that will run its course in a few days time and our life will go on. But what if it’s not? The “what if’s” are always in the back of my mind. They are always there. 

The ripple of fear will always be with me now. My hope for myself is twofold: 

1) I hope that I learn to manage it in a way that allows me to be in control of my ripple of fear. I wish to have the power and strength to keep the fear in check. Knowing that this is one of the ripple effects from Reagan’s illness and death and learning how to manage it. Learning not just how to control the fear but how to use it. How to know when it’s just my head playing the what if game again and when my gut is telling me something is off. I pray to one day control the fear because I know it’s here to stay. 

2) I hope I don’t pass this ripple on to Aidan and Ryan. I don’t want either one of them to be crippled with fear in anything they do in life. I want them to live without thinking they could be next. Naturally, Aidan already is living with some of this after the death of his sister but hopefully my fear doesn’t compound it for him. I am very careful about what information I share with him when others are sick and how I share it with him. I hope I can help him learn to manage his ripples and not pass on my own. For Ryan, she doesn’t know yet about what happened to her older sister so I hope that when she is old enough to learn that I can talk about it in a way that doesn’t instill fear of the unknown in her. I don’t want my kids to have to play the “what if” game.  If nothing else I hope I can be successful at helping my kids learn to live their life without fear of the what if’s.

The ripple of fear is real and it’s a beast. Learning to manage it will be a lifelong challenge.  Hopefully it will get easier over time. 

Until next time. 

Maggie 

#therippleeffect

#rippleoffear

#hugsandfistbumps

#youaremyfightsong

Be More Heart ❀️ 

I am #obsessed with this song right now. Have to give credit to Alysia for introducing me to this band, albeit in a crazy way! 😘

https://m.youtube.com/watch?v=RkoscU32W9Q
I think everyone can agree the world would be a better place if we all had more heart for each other. More compassion. More love. Most of all more understanding. I feel like since Reagan left this earth I have made an effort to show more heart to others. Reagan was all heart so I try to live and love as she did while still being my authentic self. Reagan changed me for the better not only in her life but also through her death. 

I do struggle with empathy. I’m not the person that is going to feel sorry for you and hug you when your struggling. I’m the one that’s going to listen to you, be there for you, and then tell you to find your way through it. No it’s, and’s, or but’s about it. Find your way through it. You won’t get empathy from me but you will get support, encouragement, and someone who will push you to be better. To do better. 

I’m not sure why I’m built this way and we joke in my family it’s because my mom was in critical care after I was born so she didn’t get to hold me for 2 weeks but I know that’s not it πŸ˜‰ (we just like to give my mom a hard time especially since our baby brother is clearly her favorite)! I just have always found my way through challenges in my life and expect the same from everyone else. 

I think I’ve probably touched on these things in other posts but since Reagan’s death I’ve gotten better and worse in some aspects. I don’t feel empathy for many people. I just can’t. Not after the loss of my perfectly healthy 5 year old to an unknown viscous disease. But I do have more heart. I do find that I am MUCH slower to anger and quicker to laugh. Because as they say, life is TOO short. Pick your battles. Don’t sweat the little things. Focus on the things that matter and move forward. Be the wheels, not the track. 

LIVE YOUR LIFE. LOVE YOUR LIFE.

#morelifelessattack

#youaremyfightsong

#hugsandfistbumps

When Friends become Family

Myers family we will miss you like crazy. There’s no other way around it. You are a part of our family now. I feel truly blessed to have spent the last four years getting to know each and every one of you. I cannot possible put into words what you mean to me and my family.  It is rare in life to find other’s that you form such a deep bond with. 

I knew this day was coming but man does it suck!!! My heart just aches thinking about you not being here. And really it’s not about us. I want to be around for your kids as they grow up and to take them on adventures. I wanted our kids to go through the stages of life together. I pray they keep in touch and remain close as they grow even though they will be in different states. I will cherish my time with the kids over the last several years. And yes, I know we will all see each other again but not in the way I wish we could. Don’t get me wrong I am beyond happy for you and your family but UGH I just want you to stay. Sorry I know it’s selfish. Anyway, here is my brief  letter for each of you. 

Lynnea,

I have never been the girl that has a bunch of girlfriends. I have always found it easier to get along with men than with women. I know that comes as a shock! πŸ˜‰ I truly had only only a few women that I was close with before I moved to Gulf Breeze. Our friendship is unique and is one that I deeply cherish. You have such a kind, genuine spirit and truly are an inspirational woman. You are one of the few people I can share my thoughts and feelings with and know that you are probably thinking the same thing and that there will be no judgement. You are my person. You have been my rock over the last several years and especially the last 18 months. I don’t know that I could have gotten through the last year and a half without you. I will never forget that just as we finished telling our family that we were taking Reagan off of life support you came running around the corner. I will forever remember that embrace as we cried together and prepared to say goodbye to my daughter. I don’t know what told you to be at the hospital at that moment but I sure am glad you were there. In the months since you have been such a source of comfort for me and my family as we have worked through our grief.  You are a truly remarkable women and I am honored to call you my friend. I love you. 

Jim,

I am glad that I was able to teach you how to provide “full service.” πŸ˜‚πŸ˜‚ Whether it was a night out on the town or hanging at one of our houses we always had a good time together. From trying to get Lynnea to drink anything but water to walking the parking garage handing out a loaded pizza it was always entertaining.  When we were  saying our goodbyes to Reagan I remember turning around and seeing you standing there in her room. I didn’t know you were coming but was so thankful you made it to the hospital in time to say goodbye. I’m sure you broke a few traffic laws on your way. It is going to be so strange to have someone else as a baseball coach next year. Your passion for baseball and dedication to the boys is second to none. Aidan was lucky to have been coached by you for the last 4 years. I am thankful that my you picked the kid with the boot to be on your team in 2013! I am excited for you and your new position and will be holding out hope for a relocation back to Gulf Breeze with your next promotion! πŸ™πŸΌ

Jim & Lynnea,

I feel like your kids are my kids and I should have been granted joint custody. πŸ€”It kind of feels like I am going through a divorce and the judge granted my ex full custody.  πŸ˜© I love both Cole and Kahlan like they are my own and will miss seeing their sweet faces every week. I am excited to hear about their new adventures in Texas and can’t wait to visit! 

Myers family you have left your mark on the Smith Family and on Gulf Breeze. Thank you for sharing your lives with us the last several years.  Our village just won’t be the same without you. 

Keep it classy in Houston. 

#fullservice

#loveyoucrazy