Category Archives: friendship

Bless Our Mess

My son’s occupational therapist shared with me something cute my 8-year-old shared with her at school. She said, “He said my house sure can be a mess sometimes, but its the best mess. Its my favorite place to be.” At first, I have to admit, I was mortified because I carry a little bit of secret shame about my free-spirited, “just trying to survive and stay sane as a working mom” housekeeping philosophy. But, then, I was struck with how profound my son’s statement really was. Our house, our family, ourselves sure can be messy, but messy can still be amazing. Messy can still be our favorite place to be. A big ole come as you are mess is actually quite comforting and endearing. You are always accepted and don’t have to clean up first and fit everything into a neat and tidy toy box. It’s the expectation of shiny, well-organized constant perfection that trips us up in so many ways, isn’t it? I honestly don’t want a constantly neat and tidy house. I want a sanitary house with clean dishes, the litter box scooped, enough clean clothes for the week and the trash taken off, but do I want floors with daily fresh vacuum lines and with toys neatly in their place or my son’s art supplies in perfect order at all times? No, I really don’t.

One of my favorite things about my Mom’s parenting style was that she was very relaxed when it came to her expectations of the house. She would rather let us relax, study, and play at home most days than to have a rigid chore chart schedule. There were times she asked for help or told us “alright that’s it, your room is a disaster its time to clean it up,” but overall there was always a sense of home being a place to rest, get schoolwork done, and to not have to be as tightly wound as the outside world expected. I want my kids to look back on their childhood the same way. That their home is the one place of constant refuge where they can kick back and relax, be messy, be themselves, but also a place where they can earn a dollar if they help Mama do the dishes.

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Of course, I’m not advocating never cleaning or letting your house be unsanitary, but I am all in favor of relaxing a bit and instead of shaming myself for my messy home, savoring the fact that this is my son’s favorite place and “the best mess.” My kids don’t care that my desk is overflowing with books and papers for the online class I teach. I’m thankful my youngest son’s room looks like a Lego explosion and he feels creative freedom and relaxation. I’m thankful my oldest son’s room is an explosion of stuffed animals and art supplies where he can shut the door and decompress after school. I’m thankful I can go to yoga or read a book instead of spending hours each day trying to get my home to look like a magazine. I do not enjoy cleaning at all because it is an exercise in futility and I don’t have the time to put any effort into futile pursuits my kids will just undo for me. Why spend an hour picking up Legos or hounding my son to do so when I could instead be playing Marvel versus Capcom with him or even just sitting by him on the couch reading a book, available if he wants to talk while he draws? He is just going to empty out the Lego boxes looking for the perfect Darth Vader helmet tomorrow anyway, so why bother? Ain’t nobody got time for that. I sure don’t. I work 3 jobs for goodness sake and take care of 2 boys, one of whom has special needs that take up any excess energy I might have. When you are just trying to survive as the parent of a child with special needs, you don’t have time to get neurotic about perfection. You start to accept and cherish the beautiful mess that is your life because your ideas about perfection were shattered the day you received that diagnosis.

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As I think and write, I realize that housekeeping tends to be a deeply personal issue for me and for probably most of us women. Men are pretty much off the hook because if someone comes over and the house is a wreck, no matter if the wife works just as many hours or not, somehow the spoken accolades or the passive-aggressive disapproval falls on her. Her only hobby  after working full-time should be cleaning and childcare right? That is the unspoken expectation so many of us feel. It is us women who frantically announce, “Ya’ll! Clean up NOW Grandpa is coming over in 2 hours!” as we bust out the mop, the vacuum, and the shovel for all of those toys simultaneously in a flurry of panic at the thought that our family member or friend is going to judge us harshly for slacking off and maybe playing with the kids or reading instead of non-stop cleaning.

Who do you allow into your home? I am very selective. I know which friends are my “safe friends” who I don’t have to clean up the house for if they want to swing by for coffee and these friends are the same ones I go to when something serious is going on in my life and I need to share my pain or my emotions without having them judged “a hot mess” or offering to “tidy up” my feelings for me either. There is something beautiful about accepting the messy parts of ourselves, our people and our homes. Let’s cut ourselves and each other some slack as we wing it through parenting, housekeeping, and realize we are all really a mess in one way or another. But we can find the love in our messiness. We don’t have to get it all in the toy box to be loved or enough.

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Sorry I Missed Your Call. I’m Busy Riding the Autism and OCD Parenting Roller Coaster.

When I was a little girl, my parents would take us to the county fair or to Six Flags over GA to ride roller coasters. I was always the type who would get on any ride or roller coaster not because I wasn’t terrified, but because I knew I wouldn’t die and that at the end I would be so exhilarated that I did it! Some of the rides were fun, but some I would just have to hold on tight and scream my lungs out to endure until the end. When you scream out “Stop the ride! Let me off!” no one hears you. They can’t stop the ride just because you want off or you think you are going to have a heart attack. No one cares. You can scream or cry all you want to, but it changes nothing. You just have to hang in there and endure. You have no idea when it will be over. It feels like forever. You can’t even really think straight to evaluate how far along in the track you are. You just hold on tight, scream, cry, pray, and try not to throw up. This is very similar to my experience as the parent of a child with autism who is going through the tween years and has recently developed OCD as well (because no, Lord, autism just wasn’t enough). It often seems as if just when I have caught my breath and think I’m gonna survive this thing just fine, I am thrown into another upside down loop de loop, tilt a whirl and I’m in danger of losing my lunch, my glasses, and looking pretty rough when I get off this thing. Thankfully, I get a chance to get off this roller coaster sometimes when my son is at school or at my mom’s when my husband and I have a date night, but even then it feels as if although I’m not actively riding it, I’m just standing in line, trying to settle my nerves taking deep breathes and waiting to get back on again.

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I love my son more than anything and we have beautiful, wonderful moments which are exhilarating like the moment when the roller coaster stops and you smile and laugh with glee because you did in fact survive this thing and the endorphins and adrenaline are pumping through your body. Woohoo! A sweet hug! Another milestone met! Another new word! Eye contact! Potty trained! He only turned the light switch on and off 11 times instead of the usual 12! But, watching him struggle so much in spite of all of the extra stuff I am doing and buying and trying….well it makes me want to scream “Ahhhh I  hate this ride! Someone get me off! I’m gonna puke again!” pretty often.

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ASD is a spectrum and presents in a lot of different ways for different kids and adults. You may have ASD yourself or have  a child who has ASD or OCD and it may feel like a walk in the park to you, I don’t know. All I know is my experience and my truth about how it feels to parent my particular child in my particular circumstances and it feels hard right now. Just when I think I’ve got a handle on things, here comes another loop I’m thrown for whether due to a new developmental stage, illness, finances, etc.

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I think people must assume that because I say  it is so hard, I’m just doing it wrong. I wish they could see how much time, money, energy, therapies, diets, supplements, now even medicine we are doing to try and help my son thrive and be happy day to day. I feel like I should be able to make this work somehow. I should be able to not look so frazzled or I should be able to stay in Mary Poppins mode and not ever raise my voice. I should just get up earlier to avoid looking disheveled and a mess at the morning drop off at school (nevermind I’ve been dealing with his sleep issues all night long and I work late two nights per week). I should pray (check, I pray almost constantly). I should work from home. He should take this supplement (yep, already taking it), we should try this diet (yep doing that), I should _______________ (not be writing about it?). I should change my perspective (yep in therapy myself trying to do that). There has to be something I could just fix and make this easier on myself. I wish there were. I spend hours each day researching how to make this better, how to be a better mom, how to accept this unusual life journey and find more joy in it, how to make my marriage survive this, how to help my other son cope, how to make extra money to fund my sons needs, etc. Although many of the things we have done for our son and for ourselves have helped tremendously, I am still working uphill just to get my son to the most basic level of functioning and to get my family to the most basic level of functioning. Even Pollyanna would admit that’s kind of hard.

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Each day is a roller coaster of stress and I am horrified at how I must appear from afar. This is not me. This is me just trying to survive. My son isn’t going to go into remission after his treatment. He isn’t going to be sick for a little while. This is a long-haul thing for us. A marathon, not a sprint. I feel like the main character from the movie “Bad Moms” who is just stressed to the max, except I don’t have the option of just telling everyone to take care of themselves for once, because my son can’t. So, I publicly apologize for seeming constantly scattered, self-centered, crazy, stressed out, no time for small talk, snappy with the front office staff at the school, not put together, too focused on my son’s ASD diagnosis, flaky, not a good friend, forgetful, not 100% on top of every little detail at work, not having the energy to invest into things that aren’t my business or I don’t care about anyway, frequently venting to my BFFs, always broke, not able to hang out much, bursting out in tears and saying “But I work 3 jobs and what we are doing now is already so hard!” when my son’s reading teacher asks me to do add extra homework, frequently not able to answer the phone, giving up on daily gym workouts, holding tight to my Saturday morning yoga time, not up for any kind of “fitness challenge” because my life is already a 365 challenge, or just distant and crabby in general. I apologize for being strangely open (oversharing) and also really defensive (pretty much not wanting to hang out with non-special needs parents much at all).

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This is my norm, this is my life. I am just trying to hold on tight, scream, and survive it without losing my lunch just like a kid riding a killer rollercoaster. I promise you that this has nothing to do with you, I really do like you a lot. I would love to be able to hang out with you more, to relate to your stories about your kids extracurriculars and how proud you are, to put more effort into my home businesses selling amazing things, to have more of a social life that is not online in nature, to laugh more, to volunteer more at church instead of crying through all the songs just to release all that stress, to be able to just throw my kids in the mix of all the other kids at church and go chit chat with the other moms rather than having to go sit next to my son and try to hold back my tears as I rub his back while he’s biting himself and rocking back and forth because the music is too loud and there are too many kids having too much fun in there.

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Maybe we all have our roller coasters, I don’t know what goes on behind the closed doors of your mind or home, but I do know that it really does help to just let it out and scream your head off sometimes when you need to, to hold on tight to the people you love, throw your hands up and laugh hysterically sometimes, breathe deeply, and remember that you won’t die even though you may feel like it on the loop de loops. We special needs parents will survive as we wing it together. If you need to talk to someone who “gets it”, call me. It will likely go to voicemail, but I will call you when I’m driving alone in the car. Reach out to Parent2Parent or a support group. You don’t have to ride the roller coasters alone, there are plenty of seats and we can hold hands and scream together as we go through the dips and curves.

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Of Mourning, Dancing, and a Polka-Dot Dress

On a cold, grey December day in 2012, I said goodbye to one of my dearest friends. Friend isn’t even an adequate word. This friend had helped me through some of the worst seasons of my life and helped me find joy even in the months and years I wanted to literally run away from my life, my struggles that seemed never ending, and the pain I held in my heart as I forced a smile onto my face in daily life. It was an unconventional and unlikely friendship by all outward judgment, but it is one I cherish to this day. He: a deeply depressed and lonely person. Me: a young, frazzled mom feeling the weight of the world on my shoulders, having almost daily panic attacks while trying to attend to my children, go to school, and work a job. Somehow, our brokenness collided and somehow started a healing process for us both. With each other, we were both able to smile amidst the hand life had dealt us.

And then he started getting sick. First, just stomach aches. The stomach aches would come and go. Good days and bad days. I figured it was gallstones or something. He saw a doctor and they didn’t think it was anything serious, probably acid reflux. The medicine didn’t help. Then, things started to take a turn for the worst, then a nose dive for the worst. The doctor ordered some invasive medical tests. I took him to those appointments, sitting in the waiting room reading a book until it was time to go back and see him in the recovery area. The doctor tried to ascertain if I was his daughter or wife or what (“just a friend”) and we laughed a little about that when the anesthesia was still in effect. I helped him to my car and took him to get a Steak and Shake milkshake that sounded good to him. He couldn’t even drink more than 2 sips. I knew this was more than acid reflux. It got so bad that I took him back to his family doctor one day and went in with him to his appointment. With tears in my eyes, I said “please, this is serious, help him.” The doctor took a closer look and realized he was jaundiced and I saw a look of serious concern spread across her face. She ordered some blood tests and a full-body scan.

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He received the dreaded phone call about his results when I was on my way into work one day. Employers don’t look kindly towards “I need to take a month off to attend to my sick friend” so I had to trudge on taking care of him while having to go into work and perform while holding back my desire to curl up in a ball and cry. I received a text in a Kangaroo gas station parking lot that would change everything. “It’s not good, it’s cancer, it’s terminal.” Leaning on my steering wheel, I whimpered like a dog, barely able to catch my breath. I texted back, “You are not alone in this.” It was all I knew to say. His daughter bluntly asked me to just cut ties now unless I was in it until the end. Not a second thought, yes, I am in this. I don’t leave the ones I love in their time of need.

I still had to keep the rest of my life running as my friend was slowly and painfully dying. I couldn’t lose or quit my jobs. I couldn’t neglect my kids. It was really hard to explain to my children’s Daddy who was planning a wedding with me after we had finally reconciled why I was going to visit another man daily who was dying, but somehow he understood the best anyone could under the circumstances.

Then, that December day came when we said our last goodbyes.  I got some sort of closure. I sat in the 3rd row of the chapel during his memorial service silently shaking and weeping in a black dress with frills and tiny white polka dots. A close friend of mine who had lost touch with me for a year or so due to her own difficult life circumstances and issues really came through for me that day. She simply sat beside me so that I wouldn’t be alone in that pew. She held my hand and anchored me when I felt like I was going to pass out. She understood the gravity of the situation because she was one of the only people I have ever been able to tell everything to. We have gone through some difficult things since then, but that day (and others) will forever anchor me to her, no matter what.

mourning

Psalm 30:11 (ISV) says: “You have turned my mourning into dancing; you took off my sackcloth and clothed me with a garment of joy.” During my period of mourning, I had read this verse and felt a mixture of impossibility and hope. Although I have always loved to dance, I didn’t dance for a year. I didn’t feel music in my body, I didn’t feel anything except a crushed heart for many months. Most people didn’t realize what I was going through, and thus didn’t offer support because this was not my spouse, my child, my parent, etc. It was admittedly an odd friendship. I learned there is a name for this kind of grief: disenfranchised grief .  I realized it was up to me to do this grief thing more or less on my own. I started seeing a counselor. I had started going to yoga classes before he passed away as a way to cope with the anxiety and panic attacks I was having. I continued this and found myself crying silently in class as yoga helps release deep emotions. Yoga was a huge part of my grief journey. It helped me re-connect to my body and my numb or conversely chaotic emotions. I prayed, I read stories of grief and mourning. The Dovekeepers by Alice Hoffman spoke to me on a deep level, although it is not necessarily a grief oriented book. The characters all experienced losses and had to go on heroically. I feel that it is important to share what helped me during the grief process. It is an active process and not a passive one waiting to one day be ok.

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Fast-forward to 2015. I am usually so busy with work, kids, home, etc. that I don’t go out much if at all. I just try to keep my head above water on any given day juggling all my responsibilities. I had made a new friend whose kindness and genuine Christ-like love for others still has me a bit in awe. He gifted my now-husband and me two tickets to a charity gala. My husband and I went to the gala and in a series of unfortunate wardrobe events, the dress I had planned on wearing didn’t work out. We were late to the event, so I just grabbed the first thing in my closet that would work without thought. It was the black frilly dress with tiny white polka dots on it that I had worn to my friend’s funeral. I didn’t even think about it at the time. I just threw it on, grabbed my high heels and ran to the car. We were bickering on the car ride over to the country club about some matter of no importance. So, when we arrived, we both grabbed a glass of wine immediately. I seldom drink, so when I allowed a couple more glasses to find their way into my hand, I am not even going to lie. I was drunk. Then the music was crunk. And before I knew it there I was dancing in my seat then up on the dance floor doing the Cupid Shuffle then dancing to “Que Linda Back It Up” and my dancing was hearkening back to days of yore when I would shake it like a Polaroid picture and drop it like its hot on a regular basis. My husband isn’t the dancing kind, so he just sat mortified, amused, or perhaps jealous at the table drinking another glass of wine….it was pretty hilarious but also the source of some bickering on the way home about why my kind of dancing isn’t appropriate for public viewing. That was fine though. It was worth it. The next morning I woke up and realized that I had worn my FUNERAL DRESS to the gala and my MOURNING had literally been turned into DANCING and JOY.

Sometimes I still feel a wave of grief welling up in my heart and I let it wash over me. It comes and it goes. No point fighting it. Just like an ocean wave, you just ride it out. If you fight the rip tide, you will lose. But if you surrender, you will come out the other side. But, I smile at the fact that even this one time I was able to dance and rejoice. I also now understand why wine is a prominent feature in the Bible.

I’m still winging it through this grief and dancing and joy thing….do you relate to my story? Leave a comment with some advice or your experiences and let’s wing it together.