Uniquely Mine

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Throughout this past year I have been journalling in the notes section of my phone. My hope was to eventually start my blog up again. As I read though my year of notes, I noticed several had a common theme: my struggle raising a unique three year old: X. While my other notes, some funny and others deep in thought, can stand alone, these cannot. They are tied together like a string of pearls and the progression of thoughts are interdependent. Please excuse the length, and focus on the thoughts.

7.27.15

Despite my own attempts, I’ve never been a “by the book parent”, and the last few nights are no exception. Dreaded nightly showers are motivated by blowing bubbles to keep a child scared of water slightly close enough to the sprinkles to be washed. Painful attempts of brushing X’s teeth are motivated by dialogue such as, “10 seconds, we can do anything for 10 seconds” as I plunge a brush toward X’s teeth. Words like, “You can brush or I can brush, but we have to brush our teeth.” Only to have him run away screaming. But it’s been getting easier, small steps toward “normal”.

Last night I washed X’s hair by myself. I mean, it still had soap in it, but I was able to get it wet, soaped, and mostly rinsed on my own with minimal fussing.

Tonight after a shower, X asked to brush his own teeth. He did, sorta, back and forth actually touching his front teeth. Then on with Pjs and He climbed into bed with me and we began to read. At first we read his library books. Then, I picked up my book and began reading silently as he “read” his books to himself. After showing some interest in my book, a middle school novel, I began reading it out loud. He curled up around me, snuggled in, and after a short time, he fell asleep.

Yes, many nights X falls asleep in my bed, or wakes up scared and finds his way there. Yes, getting ready for bed and the bedtime routines are insanely hard in our house. Like bring you to tears hard, but some nights it is easier. I think it will keep getting better, as he models my behavior: My positive smiles despite my worries and heartache. My joy comes from the little victories: the first shower without needing two people in at least a year, X asking to brush his teeth, and warm snuggles. And then there is reading, no one “reads” and memorizes like him. Maybe that will be his greatest strength.

I can almost guarantee no other household looks like mine, yet I love my life. It’s perfectly messy, routinely unexpected, full of love and uniquely mine.

God, please give me strength on the nights when it isn’t easy. Help me find joy in you when the victories are few. And Father, forgive me for the nights when my patience has grown thin, and my faith is weak and full of doubt. I’m sorry. God, please fill every mother, like me, who struggles and falls short of parenting “by the book” with strength, joy and hope. For tomorrow is another day. Amen.

12.21.15

I love my life, but sometimes there are tough moments. Like yesterday when nothing really bad happened but I still came home and cried. X threw two fits on our way into church. Why, because I told him no and his three years old. And also because bible class can be over stimulating. I love my church. I love the people. I love that we gather in the walkway and foyer to visit between services. X doesn’t. I try to get there either before service starts or a few minutes after to avoid the crowd. X use to love bible class and once I got him to his room he was happy. The toddlers did independent play and teachers did a few patterned songs and bible stories. A few months ago he graduated into the preschool class. The kids now talk to him and try to play with him. I teach in the toddler room and if I look over the barrier, I can see him. He screams at kids and tells them to get away. He plays by himself and repeats his little patterns. His teacher tries to involve him, but if she pushes, he screams. Then, he begs me to take him home. My. Heart. Breaks.

It’s not just that he has a bad day. He has had delayed development since 9 months and off and on has seen an occupational therapist. It’s nothing new to us. His doctor told us many kids, with the right support, simply take longer but get caught up. Basically, they grow out of it.

But now he is three. We have had him evaluated for sensory issues over the summer. Yep, he has those. They recommend more occupational therapy. Our insurance won’t cover it until we have a diagnosis by a development Doctor. Our appointment is in Feb and a follow up in March.

With each fit, scream, and repeated behavior, I cry. I cry because I’m worried he won’t grow out of it. I’m worried it won’t get easier. I’m worried I will be the parent attending ARDs and requesting modifications. I’m worried my beautiful little boy will be called weird and have trouble making friends at school.

But then he makes progress. As tough as yesterday was, he also ate slice of bread for the first time ever. We have victories. We have joy. We have faith. Yet, I feel alone with no one to cheer for us. “He ate bread!!!” Who posts that on their social media?

3.4.16

It’s not a big deal, until it is.
I walked out of our Pediatric Developmental Doctor’s office with my head held high. I can do this. No biggie.

Then, I realized I needed to pee. Once again, I thought I could handle it. I grabbed X’s hand and whisked him into a family restroom. He started screaming. And kicking. He was terrified. He has an epic fear of public bathrooms, or any small enclosed, narrow or unfamiliar room. I knew this, but thought I could handle it. He didn’t calm down. I could see the fear as his body flapped uncontrollably. Finally, he kicked so hard it opened the door. Since I hadn’t had time to even unbutton my pants, I left. I felt defeated. Alone. Embarrassed.

The meltdown, once started, won’t easily be calmed.

My plans were ruined. Messed up. And nothing was going to fix it. At least not quickly.

Two days I spent in a funk. I didn’t really want to talk about it. And if I did, I would surely cry. But those days passed.

The following week, I figured they had to be wrong. He was doing so well. He even started playing with a few kids. It’s not like you can look at him and see anything different. Maybe he could just grow out of these behaviors. Maybe I’m just letting him have his way too much. Maybe it will get better.

It’s not a big deal. We have routines. We do our thing. He likes to go to the same places, and see familiar things. I bring “his” snacks. And he smiles and laughs. He plays outside. He can run and jump. He can dance and sing. He is healthy. He is beautiful. It’s not a constant battle. We have days filled with so much joy.

But then it is. When I realize what we avoid. When I think about the everyday foods he has never tried. The places we can’t go. The birthday parties and events I cancel on. The bathrooms we don’t enter. The eggshells I walk on to avoid meltdowns. I know it appears like I’m spoiling him.
It’s fear. This fear lies in darkness. And how do you drive out darkness? You shine a light.

Our child has been diagnosed with Autism Spectrum Disorder. Diagnosis At such a young age may shift so I don’t want to label him. It’s moderate and he is high functioning.
It’s not a big deal. We have a beautiful life. It’s not a big deal, until it is.

In those desperate moments where it really is.

7.17.16

Every family has their own unique struggles. I don’t want to pretend that mine are worse or even that much harder, but they do feel different and incredibly tough sometimes. I struggle daily living in the tension between looking at my child and seeing the most beautiful, unique, creative person ever created, seeing him and being completely in love and yet, in the same moment being completely overwhelmed.

Yet, I remember a wise young women once saying, “When you signed up to be a parent you don’t get to pick the level of difficulty. You knew there would be late nights and hard parts and maybe it’s more than you expected. But you can do this.” I can’t remember her exact words but she went on and reminded me that we can’t pick and choose, we get what we get and then make the most of it. They were not empty words either. In her next breath, she offered to help, in any way she could.

That’s my village. I’m surrounded my a small group of friends and family who remind me I’m doing my best in the midst of feeling like a failure. And then they offer to help even if it is just watching him so I can use the restroom in public.