Category Archives: motherhood

Sink Deep, Rise Victorious after Loss

Grief is a universal experience. Every person will at some point in his or her life experience loss in some form. The only way to stay safe from loss is to never love, never care, never attach. The amount of grief we feel tends to correlate to the amount of love we have for a person, pet, job, situation, etc. As a counselor, I advise my clients to let themselves make space for grief and mourning rather than trying to be “fine” and shoving the grief down, drying up the tears, and getting on with life too quickly. In many cultures, mourning is a sacred time set aside for weeks so that a person is allowed to cry, wail, be surrounded by loved ones who do nothing other than “be” with them witnessing this pain and offering kindness (not advice). Being able to sink deeply into grief and truly mourn enables a person to rise more quickly in a state of emotional freedom in which they can feel joy again rather than numbness. Putting off mourning, trying “get it together” and act “fine” by going back to work and regular life duties too quickly only prolongs the healing process. Sometimes we try to “speed up” the grieving process because we are uncomfortable or even terrified of the sinking- the feeling out being out of control, of emotional pain so severe it is hard to breathe, the fear that if we sink we will never rise again. Other times we try to speed this process up because we are of a practical mindset and feel that there is no time to be “in the feels” and we have things to get done. However, grief always finds its way to force us to experience it one way or another. Sometimes, in maladaptive, negative ways such as drinking too much, workaholism, an affair, emotional numbing, disconnecting from loved ones, etc.

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Recently, I experienced a miscarriage. I had gotten my hopes up after an early ultrasound that showed a strong heartbeat and baby growing on target. My blood work was perfect. Everything was in line. Post-miscarriage pathology testing revealed no genetic abnormalities. I was left with no explanation other than simply it must have been God’s will for me not to have this baby right now. I know God loves me and isn’t a magic genie there to just give me all my wishes and make life peachy. I believe that God uses life as a testing ground to teach us the lessons we need to learn to evolve spiritually. Unpleasant experiences teach us things we would not learn from happy times. I can accept what happened and want to ask what I can learn from this rather than “why me”, but I still needed time to grieve as my body endured the physical and emotional suffering for days on end of the miscarriage process at home. For a moment, when I got the news that morning that the baby had no heartbeat and a miscarriage would start soon, I actually considered going into work that night and not telling anyone. I am that much of a workaholic. I had to use my counselor voice on myself and say “Jen that is nuts! Go home!” so I made the radical move of taking a full week and half off from work. Thankfully, I have PDO saved up and could do this. Just FYI, if anyone has to go through this horrible experience I would highly suggest you ask your doctor for pain pills, take the week off from work, get childcare for your kids, make sure you have plenty of Gatorade or electrolyte drinks in the house (hydration will keep you from dying or having to go to the hospital), prepare your mind with prayer and wise counsel (thank you Angela for helping me when I was in spiritual warfare by reminding me of the truth) and plan to settle in for a hellacious ride. I have given birth to two full-term babies with no pain meds at home with a midwife. This was worse simply because the pain was for absolutely nothing. There would be no baby at the end. There was no finish line, only empty arms. If you have never given birth naturally before, it is probably less emotionally and physically traumatic for you if you just schedule a D&C procedure at the hospital. Doing it naturally isn’t something for the faint of heart. It took 5 days for everything to be over.

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But, through this experience I realized this was the first time in my life that I have ALLOWED myself the chance to SINK DEEP and truly MOURN. I remember when one of my best friends was dying of cancer, I only took one day off from work. When he passed, I didn’t take off any time to mourn. I never told many people what I was going through. I just kept soldiering on. And I fell into a depression for about a year. No one knew because I just soldiered on being “productive” while feeling barely able to do so. But, this time I would not make this mistake. I would sink and I would rise. I cried until my eyes were almost swollen shut. I lived on the couch wrapped up in comfy blankets for a week. My church brought meals and my Mom kept my boys for a few of the worst days. My husband made sure I wasn’t passing out from blood loss and was eating. But then….it was over. As if I had “cried it out” and truly felt an emotional release of all the pain. I went back to work the next Monday feeling JOYFUL and grateful to be back to being able to help people and shocked at how good I felt. I wasn’t soldiering on depressed and dying inside. I was ALIVE. I had done my work. I had processed my grief because I allowed myself the time to truly “ugly mourn” the kind that many people avoid doing. It requires courage to sink deep. It requires knowing you will come back up eventually and for me, it requires knowing God is there with me in the sinking and in the rising. I feel closure and peace and it hasn’t even been a full month. Sure, I still have moments (usually when I’m alone driving in the car listening to music) that I feel pangs of sadness or “what if?” but they don’t take my breath away and I let them come and let them go like the ocean tide comes and goes. There is nothing to stuff down or soldier through. Only an allowing, a coming and knowing it will eventually go out too.

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Grief isn’t something we talk about much in our society and most of us just wing it the best we can. But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31  May you sink and then rise soaring on wings like eagles as the Lord renews your strength.

Never Say Never…2016 Year of Surprises

2016 seemed to start of just fine, perhaps a bit more boring than usual. Things seemed on an even keel for once. My oldest son was making strides with his autism and the memories of constant struggles were slowly fading away as all of his (and my) hard work, time, and money over the years seemed to be FINALLY paying off in spades with consistently calm behavior, excellent self-expression and language, increasing social skills, no more potty accidents, and only good days at school. We were badassing autism, I would say. My youngest son had found relief through acupuncture from the tics that tormented and embarrassed him so badly at school due to his Tourette’s disorder. He had become BFFs with the neighbor boy. With our boys doing so much better and both of us working stable jobs, my husband and I were getting along better than ever before and having less heated disagreements over house chores, finances, and such. In early May, we went to a winery and I remember feeling caught by surprise and delight that I was falling back in love with my husband as we watched the sun set drinking glasses of Malbec on the patio. The overall stress level for our family seemed to be getting to that of what most people experience in their normal day to day lives. We had been living in financial and autism crisis mode for so long, I had forgotten what it felt like to just kind of coast through life some days. I posted cute pics of the kids or what new recipe I tried that night on Facebook. I went to yoga class regularly, folded laundry while watching Netflix, squeezed in the occasional coffee with a friend, date night with my husband and juggled the pressures of my jobs like a boss.

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Then, that equilibrium that I hoped would be my new normal slowly disappeared in a domino effect leaving me in utter brokenness, some of the darkest nights of the soul I have ever experienced, on my knees pleading to God, crying my eyes out in my car, calling doctors begging for help for my son, sitting by the lake talking myself out of wanting to swim away and never come back, counseling sessions, trips to multiple specialists for a new medical and mental health condition my son developed called PANDAS (“because moderate autism just isn’t enough is it God?” I lamented) which occurred after a bout of strep throat. He was also starting puberty. Crap. Humbled. Waving the white flag by calling the Marcus Autism Center in Atlanta crying and breaking down begging for someone to help my son and to help me. They did….with a psychiatry appointment. The last thing I ever wanted for my son. Never say never…..

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We had previously experienced so much miraculous success with naturopathic medicine and diet changes, public school special education programs, SonRise program and therapies (Occupational, Speech, Aquatic, and Hippotherapy), that I NEVER thought I would be one of “those parents” (sorry, I was just so ignorant) who put their kids on psych meds. As a mental health professional, I understood theoretically that there is a time and place for meds, but I observed that often parents tend to just jump the gun and go straight for meds rather than trying other treatments first and using meds as a last resort. I still advocate a conservative approach to medication. But, where I went wrong was assuming that because I am a mental health professional, well versed in natural treatments for various ailments as well, that my son would just NEVER need meds. WRONG. Last resort was exactly where we were at. At least I could feel confident I had exhausted all the options first I suppose.

PANDAS (see article) plus the onset of puberty made autism look like a cake walk. PANDAS made debilitating OCD symptoms, insomnia, and aggression appear. These tormented and took over my once sweet and docile son’s daily life and thus my life, my youngest son’s life, my husband’s life, and even affected our extended family and friendships. We had to stop going to church, taking him to the store, visiting friends, or going out to eat as a family. He just couldn’t handle noisy or crowded places anymore. We would spend hours trying to get him to finish up his rituals of closing doors certain ways or counting to 12 over and over. One night, I stayed up until 2am waiting for my son to stop repetitively banging the bathroom door to the count of 12 over and over again for hours. If we tried to get him to stop or even so much as breathed too loudly during these rituals, we would be violently attacked. My son is as tall and weighs as much as I do. I would have heated disagreements with my husband and my mother about medication. I was desperate and wanted to try it for my son, they were adamantly opposed. One day, one of my younger son’s friends came over to visit and made the mistake of “opening the door wrong” and my son went into a rage. When I tried to calmly de-escalate things (even thought I was on the verge of a panic attack) and make sure my younger son’s friend wasn’t attacked, my son started pulling me by my hair to the ground where we wrestled and I had to pin him down just to get him to let go. I am a trauma survivor and every time my son had one of these episodes I would end up going into the bathroom crying and barely able to breathe in the throws of a panic attack. I would have to drink a small glass of wine just to feel like I wasn’t going to hyperventilate. I was worried about one of us being seriously injured or that I would snap. I just wanted it to STOP.

I knew hospitalization was an option people would advise if I told them the truth, but I refused to put my son in a mental hospital where God knows what would happen to him. I saw news reports of children at local mental hospitals dying or being scalded in the bath. I would rather have my ass kicked all day long or let him kill me than risk inhumane and traumatic treatment for my baby. This is how so many parents feel and why so many families end up in tragic situations. We can’t trust the quality of the help and many can’t afford it if they could trust that care would be adequate. “I am a mental health professional, I will make my home my son’s treatment facility”, I decided. I just didn’t have prescribing privileges, so I needed a doctor’s help. That’s when I reached out to Marcus Autism Center. They normally have a 6-8 month wait list for psychiatry. After I told them the truth about what was happening and how I didn’t honestly know how much longer I could take it, they worked us into a cancellation spot 4 days after my call. I just had to hold on 4 days.

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The first medicine, Clonidine, helped so much with sleep. My son sleeping again helped me feel like I might make it after all even though the days continued to be torment. I found the place he raged the least was in the pool, so every day off was spent at the public pool for as long as we could stay. I still had to pull myself together and make it into work looking like my son hadn’t been attacking me and act as if nothing was wrong and do my job as a mental health professional. It doesn’t make good water cooler talk to discuss how your son kicks your ass if you breathe wrong when you work at a domestic violence victim’s services center. I needed to keep my job and my paycheck. Next, we added in Prozac supposedly for the OCD, which made my son violent and manic all of the time. Now, I had a child who was in an irritable mixed state mania plus it didn’t do crap for his OCD and PANDAS. I called the psychiatrist and told her I was stopping the Prozac. She wanted to try increasing his dose at first, but I said hell no as politely as possible (you HAVE to advocate and speak up to survive this thing as a parent) and she made an appt for us to come in the next day for another treatment plan. That’s when the decision was made to put my son on Risperdal. As a hippie, crunchy type mom this was a “big gun” antipsychotic med I did not trust and did not want to try. It was going to make my son diabetic and make him grow breasts, I feared. But, in utter desperation I honestly would have tried a tranquilizer dart for a bear at that point so I said “what the hell? I don’t even know anything anymore, screw everything I think I know” and got the prescription filled. I lied to my husband about it. Within just a few days my son was BACK. He kept getting better day by day, calmer, happier, engaging with us, not zombied out like I had feared. Biting himself less, attacking less, then I realized days had gone by and he hadn’t gotten physical with us, I hadn’t had to tell my younger son to lock himself in his room for safety. It was a MIRACLE. I finally told my husband and he cried because he finally had to admit that our baby did need meds and that they were helping. This isn’t what we had wanted to do. But never say never….

After he was stabilized mentally, I had the energy and strength to start going more hardcore into researching PANDAS and treatment options. I found a pediatrician in Atlanta (Dr. Rodbell) who takes our insurance and is PANDAS informed (many doctors aren’t) and we got on the wait list to see him. We started a treatment protocol of long-term antibiotics. This made me cringe because we avoid antibiotics in our crunchy natural household like the plague. Never say never….

Lots of driving back and forth to Atlanta ensued (about 1.5 hours away from our home). I somehow shuffled my work schedule around to be off some half days to take my son to his specialists and therapies myself and not lose hours. I proceeded to get quietly then loudly pissed off at my husband for working his 9-5 job, going about his business, and not really seeing all that was going on in my world at home in the “mental hospital” I ran while I wasn’t at work at a domestic violence crisis center and all of the stress that I felt was damn near killing me. I said I would never be “martyr mom” who did absolutely nothing for herself, but that’s exactly who I became during the Summer. There was no time for me to even think about what I might like or want to do. I didn’t go to yoga class for weeks. Those who know me know that I need my yoga just to stay sane and that I NEVER miss. I wasn’t sane. I looked like shit. People probably thought I was on drugs or worse. Nope. Hanging in there. Pulling up at the school in my PJs to drop the kids off late. I never imagined I would let myself go like that. I fought so hard to not let that happen, but it did. Never say never…

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I came out of the “Summer of Hell” now embracing the wonders of psychiatric medication (still as a last resort, but one I wish I had tried much sooner before things came to a crisis point when I barely had the will to live left). Never say never. Crunchy hippie natural mama meets hell yes for RisperDONE. That really is the drug name. I joke with my husband that I would gladly make a TV ad for Big Pharma smiling and saying in my sweetest Mary Poppins voice: “RisperDONE…for those times when your child’s aggression and violence make you want to say I’m just DONE son!”

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So, we were back on track with my son’s mental health. We resumed his therapies and he went back to school no longer headbutting the teacher and giving him a bloody nose now that his meds had him stabilized. Life seemed to level out….but that feeling of love for my husband that had surprised and delighted me when we had that winery date watching the sunset on the patio overlooking the vineyards had gone…somewhere…away….we had devolved over the course of that summer into being simply fellow survivors living in the same fresh hell.

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We tried to maintain connection the best we could. We never stopped talking or being physically intimate, if nothing else just for moments of free stress relief….but the connection, the love, the emotion just wasn’t in it. We were both like shell-shocked zombies stuck together by trauma bonding. I found us a marriage retreat for special needs parents and was so excited to go in October. This was going to fix everything, right? We just needed to chill out and really connect. Love would surprise us again…right? Sadly, my precious Grandma had to have emergency open heart surgery to fix several life-threatening issues a month before our retreat. My Mom is our only respite care provider by choice because I have high standards and trust issues. She is the only person I am confident can handle my boys as well as I can over long periods of time. She had to stay in the hospital with my Grandma for over a month. We had to cancel our trip. I cried and soldiered on. I was worried about my Grandma, but she came through and is doing well thank God! We registered for the December retreat instead. We went on the retreat, connected, had fun, laughed, had one spat about housework, but overall it was a fabulous time with new friends who “get” what living the special needs kiddos lifestyle is like. Love didn’t arrive to take us by surprise as it had done at the winery, but something else was happening. It felt cleansing, painful, but good. We did realize how much we still have in common and how much we enjoy each other’s company still after all these years.

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Then, one week after the retreat when I’m walking on cloud 9 all hopeful thinking things are starting to maybe look up for the first time, we had gone out for sushi, picked up the kids at my Moms, and just had to get them put down to bed in order to continue our date night 😉 So, I’m walking into the kitchen all la-ti-da in my pink PJs to get a drink of water after putting the kids to bed when I’m hit square in the face with the fact that my husband is not who he claims to be at all, not Mr. Self-Proclaimed feminist Christian who is sensitive to the fact that I spent years in therapy getting over anorexia and trauma. That every time he portrayed himself as “someone who doesn’t struggle with THAT” he was lying. Nope, he was all of a sudden in a flash of a second none of these things he had so frequently and vehemently claimed to be. He was cheating on me. He was some shady bastard I didn’t even know anymore. I won’t go into the gory details out of respect for him, but there was no mistaking the proof. In this age of technology, it can be confusing what even constitutes “cheating” anymore, but when a husband and wife discuss and agree upon THEIR boundaries, needs, and definitions then anyone who violates that while their wife is looking forward to them coming to bed and paying her some attention is cheating, plain and simple. Cheating your thirsty spouse out of your love, attention, and affection and putting your sexual energies into someone else is cheating. And it makes that person wonder why? Am I not good enough? Do I look bad? Should I start starving myself again and undo the 6 years of therapy that got me to the point of being able to say “I’m no longer anorexic at all and I am actually able to view myself as beautiful FINALLY”? When my husband would support my recovery and tell me he thought I was more beautiful not scary skinny, was he lying to me?

Regardless of how it went down, in that moment I felt everything I believed to be true crumple into a big ole pile of bullshit. I could barely stand. I yelled the first thought that raced through my mind, “Well I guess I’ll just go out and do whatever I damn well please with whoever I damn well please now (expletive) huh!” and ran to the bathroom to throw up. I threw up over and over again all night long. It was like labor. I felt my body, the one thing that has never betrayed me and has always tried to protect me, trying to empty me of whatever was causing me to feel so sick. My body, unlike my husband, was trying its damnedest to protect me and cleanse me of anything noxious or harmful to my health. My mind was whirling around. I always said that I was the type of woman who wouldn’t put up with certain types of bullshit. I won’t put up with disrespect in my own house after I bust my ass at work all day and take care of the kids anytime I’m not working. I won’t put up with cheating when I’ve offered the option of an open marriage. I just won’t abide a liar who claims the highest fidelity in order to coerce loyalty from me. I own my home with only my name on it. I make my own money. I pay my car note. I am by no means stuck, I thought. All bets were off. What was good for the gander might just be good for the goose…..So, I told my husband to get out of the house until I could stop raging and wanting to kill him and go seduce the nearest unmarried person. I alternated between crying so hard my body shook, being so angry I almost broke my hand punching a door, and dolling myself up and flirting a little with strangers out in public. I don’t regret it. I survived being punched in the gut and having the wind knocked out of me, emotionally speaking, so I think its only fair and normal I came up swinging rather than being sweet and doing all the “right” things.

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Finally, one night I was crying in bed alone, my hand outstretched onto my husband’s now vacant side of the bed. Cold crinkled sheets. I can do this. I can survive this. I’ve lost loved ones, lovers before. I know how to suffer. I know how to feel like you are going to die…and yet survive. I started praying. Blubbering crying and praying. God reminded me of everything wrong I had ever done to my husband. How I wouldn’t marry him for so many years because I didn’t know if I could be faithful or not, 99% certain I couldn’t be. How I had messed up just weeks before we said “I Do” due to my fears creating a self-fulfilling prophecy and how, even in spite of my Herculean efforts at recovery, I had grown overly confident that I no longer could be tempted, allowed myself to be in a compromising situation and almost slipped and cheated while I was newly married, catching myself at the last second before going through with it. I realized that my husband had forgiven me much, as had God. But ultimately, the realization that was the most profound was that even if my husband wanted to see other people, I still wanted him to come home and be my best friend. I wanted him to come home to my bed, my body, my table, my food, his children every night.Heartbreak.jpg

There is no rational explanation. Just LOVE. Not co-dependency, because this isn’t insecure need out of fear of being alone (the thought of being alone actually excited me and relieved me in many ways), this is simply what I WANT and what I choose right now at this juncture. His pros outweigh his cons. I forgive him and he has forgiven me. And to me, that is love. 14 years. Plenty of reasons to leave, but more to stay and try. Maybe we could work towards reconciliation, I thought. When we had a heart to heart, he finally acknowledged the truth and shared that in counseling he had realized that he honestly didn’t trust me and thought I was still cheating on him which made it easy for him to do what he did. Maybe, I thought, instead of signing a lease at an apartment using our kids Christmas presents money as a down payment, he could just come home and we could work through this by the grace of God somehow…..It’s been tough…and beautiful…and surprising in so many ways. Surprising like that day at the winery falling back in love over wine. Except this time, we are falling back in love over honest, heart-felt conversations rather than the buzz of wine. I’m still figuring it out and realizing I don’t have to figure it all out. I can just let it unfold. The boys are super happy to have Daddy home. So am I. One thing is sure…I will never say never again after this year’s humbling lessons. I will just continue to wing it…together with my sons, my husband, and you all my sweet friends and strangers 🙂

 

 

 

 

 

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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And the walls came crumbling down…

When I was a teenager and friends described love as this intense physical sensation of heart-fluttering warm and fuzziness I just didn’t get it. I had never felt it. I knew that my parents loved me because they were always there for me. They worked hard, provided for my needs, talked with me about my problems, and told me they loved me no matter what. When I was a teenager and started having romantic interests, we would both profess our love. But, when I think back on the physical sensations it was just a mix of nausea, anxiety, and hormones increasing circulation to certain areas of the body. I didn’t connect with these high school romantic interests on a spiritual or emotional level capable of making me feel intensely beautiful sensations in my body. I never felt my heart swell and almost explode.

I moved in with my college boyfriend (who became the father of my children and then my husband) out of mutual financial necessity. We were compatible. He was intelligent, tall, handsome with long hair, he worked for a living, went to college, he wasn’t a liar, we were both a bit wild but introverted…I could go on and on, but I’ll just stop right there to avoid giving other women reasons to come after my man. He was in love with me. Heart-pounding, shaky knees, swooning, crazy love. He got into a fist fight with an ex of mine over me. He was a keeper. But, I had been through some traumatic things as a teenager that had made me build some really big stone walls around my heart that no man or therapist could break down no matter how hard he fought for me. A girl I went to camp with told me she would pray that God would soften my heart. I wasn’t too happy with her. But now I realize she saw a need in me for healing. A need for freedom. A need for those walls to come crashing down.

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It took a tiny baby to shatter these walls, bust my life and my heart wide open, revive something in me that had died, and finally…finally…help me feel these elusive physical sensations people call love. Because of my trauma history, I didn’t feel safe giving birth anywhere but at my home, on my terms, where I was in control of my body, with my wise and loving midwife holding that space sacred and telling me I was doing just fine. What she did for me helped heal me. I love her for that. She believed in me and she empowered me. I labored for 20 hours with my oldest son. Blood, sweat, and tears. I wanted to give up, but I knew I couldn’t. My man wouldn’t see weakness in me, he kept telling me that I was the strongest woman he had ever known and that he knew I could do this. I was so scared. But in that place of vulnerability and ugly crying, I found my strength. My son emerged and my heart filled with this love everyone had talked about, but I had never felt before. He started wailing and I cried, “Oh Grey, I know, it was so hard baby, I know. I’m here, its ok” and I latched him onto my breast instinctively. He found comfort and nourishment. I found out what love felt like. Heart chakra wide open and swelling to the point I worried my heart would explode, holding my son and smelling his tiny head. I looked into my man’s tear-filled blue eyes and felt visceral love for him for the first time. I think I had always loved him, but my body and mind had just been too numb to fully feel it. Suddenly, I had come alive. My body is powerful and I brought life into this world in a sacred space of love and respect.

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My heart burst open again 2 years later when we welcomed our second son. He taught me different things, namely to trust my intuition, to surrender and to have faith. I wasn’t scared when I birthed him. He didn’t cry when he was born. He just looked around surveying the room calmly. The same midwife who had been present at his brother’s birth placed him in my arms. My man was so in awe that his whole body froze. The midwife had to tell him it was ok to touch his son. My best friend was right there with me. I called over all of my family members. That bedroom was so filled with love you could feel it. Love for this little baby who had come at the “wrong” time when we were broke and young and had just received an autism diagnosis for our oldest son. But, none of that mattered in that moment as our newborn baby looked around at all the people who loved him no matter what.

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I learned later that year that love isn’t all fuzzy warm butterflies and swelling heart sensations when my man was laid off from work, my Dad was laid off from work and both my parents and my own young little family lost our homes. The economy was crashing and decent work was scarce. I learned that love is using whatever you have, doing whatever you have to do, facing fears, trudging on together, it is pulling together as a family and each member doing whatever they can to help the others. Love is ferocious. Love does what it has to do. Love feeds its babies first and goes hungry sometimes. Love is my husband taking the first job he could find and going to do back-breaking manual labor overnight for $8.50/hr. Love is me waking up at 5am getting my special needs 3-year-old and my infant son ready for daycare so that I can make it to my 8am college class and then going to work until late that night fueled by coffee and the fact that I refuse to fail my children. Love is crying so hard my body shook when I pulled away from daycare knowing my babies should be with me, but I had to make money to feed them. Love is my Mama picking my boys up from daycare and taking good care of them until I finally finished working for the night. Love is my Daddy getting laid-off after busting his ass for 25 years and getting right back up and back to work. I learned love can still grow in a tiny, falling apart rental house. Love is sitting up all night with a sick baby in the ER when you can barely keep your eyes open and your head is throbbing. Love is coming home and writing that paper and waking up with my face on the keyboard. Love is making a better life for my kids. Love is the courage I see everyday working with survivors of domestic violence who refuse to be abused any longer and will do anything to keep themselves and their kids safe. Love is giving to those who have less and struggle more than I have. Love is the sweet church ladies who bring food to shelters feeding abused women and children, the homeless, and making sure all bellies in need are full. Love is being there for someone who feels alone.

Love is a verb. Love is a noun. It is a feeling and it is also something we put into action. If we only look for the feeling, it will elude us. If we put it into action, it can change the world. Love is what Jesus taught. Not judgment. Love. “A new command I give you: Love one another. As I have loved you, so you must love one another” John 13:34

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