A Timeline for Perfection

2:45 pm: My bestie Ali(ce) is able to get online for the first time in a week, and we chat about my upcoming visit. I missed her.

3 pm: I begin to read about practical ways busy parents can build "sensory diets" for children with sensory processing issues....I have an "aHA" moment and feel recommitted and hopeful.

4:30 pm: Little Bug's PT tells me out of the blue she is putting in an order for arch support and graduating Little Bug from his bulky, cumbersome leg braces. We talk at length about foot muscles and how my kid is rocking them. Hello, totally unexpected and awesome upcoming quality-of-life upgrade!

5 pm: I call my mom because Appa is on a plane. I literally MUST tell someone this news. She is thrilled.

5:30 pm: I actually "cook" dinner at home. I pat myself on the back for being such a "with it" mama.

6 pm: Little Bug decides today would be a good day to walk up the stairs by himself (while holding onto the railing and shocking his mother speechless). We practice approx. 10 times with mama spotting, but not needing to actually help.

6:02 pm: We determine going down stairs is best saved for another day.

6:15-7:30 pm: Little Bug and I have such fun doing simple sensory activities like diving onto piles of pillows and racing our kitchen chairs around.

8:30 pm: A slumbering Little Bug wakes up when I leave his room to greet Appa home from his week long travels. Little Bug patters to the door, opens it, and is met with his beloved dada--his calm, joyful, content, surprised smile at seeing Appa standing at the door will forever be seared into my brain. Click.

8:35 pm: I open my e-mail to find one of the nicest love letters from my husband. Ever.

9:30 pm: My husband makes me Ramen because I forgot to eat dinner. I whisper "fighting!" and he looks at me like I am nuts. Wine is my friend.

9:50 pm: We fall asleep cuddling on the couch.

Mama-Ego Stroking

As I was pulling into Little Bug's special therapy today, I got a little giddy. I was about to spend a whole hour with him....this special treat for me in the middle of a busy work day. He likes the therapy well enough because they're so skilled at making it seem like fun, but the new location has him a bit on edge, so he holds my finger tightly and come back to my lap numerous times during the session. He's not like that usually, so it's become a nice little treat for me to have an hour of "mama-ego stroking" each week.

It might be wrong of me to enjoy this so much, but I can't help it.

On Birth

My little sister had a baby last night.

Yesterday morning there was no baby. This morning, a new little soul is a part of this world, our family, and his family. A child who will forever be a part of my heart.

I understand that there are fundamental feelings and emotions that women who have not experienced the act of giving birth can't understand, but my sister has given me a great gift. With both of her labors, she's called me right before the "final act" and then again from the recovery room, hopped up on drugs, and still raging on hormones. Last night she was almost forced to hang up because her oxygen was dropping while talking to me. She's let me share with her some of the raw emotion of giving birth (without actually being there, which my squeamish heart would decline anyway). She's cried out her emotions, whispered in a wavering voice her fears, and squealed her joy.

She's allowed me to experience some measure of the birth process, for which I am grateful and humbled. Ironically, last night she told me that part of the reason she is so compelled to call me in these moments is because I don't have my own experiences to judge her against. I am a blank birthing slate, ready to absorb her emotions without judgment or filters.

Last night was truly special. With her first son (the first baby for either of us), there was some measure of "OMG, I'm/You're a Mother....there's a baby here" and complications to understand. This time around, after both of us growing together for the last 2.5 years as mothers who've experiences some readjusted expectations, our conversations were much different.

More honest.
More realistic.
More sincere.
More grateful.
and definitely more joyful.

Who knows what the future holds for my perfect little nephew, but I know I'll never forget the night he was born and the gift that he is.

K--I know you read this sometimes, although with two littles you will probably miss this post. Thanks for walking this motherhood road with me and sharing those parts where your path diverges.

Delicious

I often hear people talk about their love for their child's smell.

Personally, I don't care one way or the other about my child's smell. More often than not, his smell is a mixture of sweat, milk, calendula, and a faint note of urine. Perhaps that is something I should investigate.

What I do love, however, is my child's body heat. When he was a little lump of a baby, I would absolutely cherish the moments when I would get him out of his crib. His skin is so soft and his little body was a soft bundle of warmth....not hot, but just this radiating warmth. The only thing I could compare it to was hugging a loaf of soft, warm bread.

My little son is no longer a lump, so my perception of his warmth has changed. Now I love the moments in the night when I hear his little feet pattering on our floor as he wobbles to our room. Because he isn't wearing his braces and is barely awake, I often take pity on him and meet him half way to pick him up and take him to our bed.

Well, it's partly pity. Mainly, I just love being able to have that moment back, the one where I get to pick up his sleepy form and hold him against me while feeling that wonderful, just-barely-awake warmth that is so unique to him.

Maybe instead of a loaf of bread, he now feels like a long pretzel stick fresh from the oven.....

Time Out

Last night I gave myself a time out.

By yesterday afternoon, my attitude had deteriorated to a pretty low level, primarily because of my heartbreak at having to remove my sad, but resigned, baby from the awesome bubble juggler presentation. I was supposed to go out for a mom's night, but my heart just wasn't into it. My house was a mess, my head was a mess, my husband's travel plans to come home were a mess. I was crying for no reason.

So I gave myself a time out. Little Bug went to play with his prearranged babysitter, and I went home and did some cleaning while watching a little of a favorite Kdrama. I had a drink. I took some time to use some of my anxiety and depression tools I learned from the Midwest Center to break down why my mood was plummeting, which then allowed me to start making some modifications issue by issue. In the span of 2 hours, I was feeling a little better about things.

I'm still swearing in my head, and clearly I am blogging instead of doing my work right now, but I'm working on it and don't feel quite as overwhelmed as I have the last 4 days. Weeks like this creep up on lots of people, I think. Most just don't have blournals where they word vomit about it.

If only time outs worked as well on my toddler as they do on me......

The "F" Word is Silently Running Through My Head

Today begins another phase in our therapy lives...outpatient therapy.

Little Bug is starting a very unique form of occupational therapy that only a few highly specialized pediatric therapy facilities have available. We've been on a waiting list for some time to get him into our local facility, and today is his first session. I know we are very lucky to be able to have access and means to let Little Bug have this special therapy.

This new weekly session (#8 per week) is different than the others that happen at school. I have to leave work, take him out of school, go to the facility, stay for his session, bring him back to school, and return to work. Each week. Of course it sucks for me, but I feel even worse for him. Today he will miss a "bubble juggler"..... I don't know what that is, but I have a feeling he would have enjoyed it. Instead he gets to be hooked into weird machines and messed with for an hour. And he'll be late for lunch.

It makes me sad. This whole damn hypotonia thing makes . me . sad.

Sometimes I get so pissed at his lot in life. I get so angry that my beautiful child has to live this life that isn't absolutely 100% charmed. I hate that he is missing things and experiences. I hate that he is getting old enough to understand his limitations and missed opportunities.

He's come SO FAR, and I can't wrap my mind around how proud I am of him, but he truly has so far yet to go.

Years.

Hypotonia isn't something that can be cured. They say children with hypotonia will trip over themselves and have balance issues well into elementary school. We're starting to see the proof of that. His balance is hitting a plateau and that scares the crap out of me.

I get frantic when I think of his future. In November he ages out of our state program and will have to get his therapy from a special school in our district because we can't realistically afford to retain all his therapists privately. He'll be pulled out of his normal school for a half day each day to spend time at a school that I wouldn't have chosen for him, just to get his therapy (although we are very lucky to live in a very good school district, so I am not truly worried about his care while there). This new special therapy is the only thing we are privately retaining, but it's taken my cleaning lady fund just to finance that and is a real financial pain in the butt.

It's not the financial sacrifices that upsets me really. I'm well aware that we are better equipped that many to handle the financial obligations of a child with special needs, but it's the fear that eventually we won't be able to finance everything we want for him. Or more accurately, that there will one day be nothing more we can buy, hire, or invest in to help him. Money can't buy love or time, but for now, it can buy us hope in the form of new therapy. It's approaching the point where we are going to enter into a long-term status quo, and I am scared to see where we're at when that happens.

This post really doesn't have a point. I'm aware that this impending new therapy has been part of my funk lately, but I'm also just really sad at his regression into bad social skills after such a wonderful stretch of really good behavior. It's such a kick in the gut reminder that we don't have any real control over this, nor does his little baby body and brain. It's life, but sometimes it sucks.

In total honesty, I want Little Bug's needs to all go away. I want Little Bug to be able to wake up in the morning and go through the day with ease and joy. I want him to feel normal--so desperately do I want him to be able to grow up feeling normal--I'm tearing up just thinking about it, but as his emotional development grows, I see the beginning of his recognition that right now he is not normal. Today, dragging him kicking and screaming away from the bubble juggler, we'll both be keenly aware that life isn't fair.

Make no mistake. I'll do whatever it takes in this world for this child. I'd quit my job; I'd move; I'd crawl on my hands and knees to give him a horsey ride; I'd cook. I'd sell my house and car...anything for this boy. So would Appa. And every disappointment is tempered by the fact that Little Bug is the best, brightest soul I have ever had the privilege to encounter and being his parent is an honor.

Little Bug's life will be okay. Better than okay--he's going to have a great life and be a better, stronger person for his challenges. Same for Appa and I. In the grand scheme of things, we have it easier than so many others, even if it is hard to remember that while living your own trials.

But today I'm in a funk and oversensitive. I'm swearing in my head and weeping at my desk because this whole business sucks. For me, for Appa, and most of all, for our son.

Go to Your Happy Place

Last weekend was like a sugar high; it was that great.

The last two days have been one hell of a crash from that high.

A lot of small, not very important in the long run things have piled so high that I sat at my desk this afternoon completely numb. I didn't want to be there, and I didn't want to be home. All I wanted to do was sleep, but even then, I didn't have enough get-up-and-go to even fall asleep at my desk.

Needless to say, the idea of picking up my 2 year old to play single mom to his active self had me a bit overwhelmed. I wasn't on my A game today, and honestly, I wasn't overly interested in even mustering anything more than my C+ game. When I picked him up with a less than glowing daily report, I had no idea what my plan was after I left the parking lot. I knew I didn't want to go home, but I also didn't want to sit in a restaurant on a day with mild humidity.

So I went to the one place I knew I could count on, our local botanical gardens.

This place holds such a special place in my heart. It is the place where I claimed my right as Little Bug's mother. It's the place we've met friends and spent lovely evenings as a family. It's a place that is teaching my suburban baby to appreciate and protect nature. It's a place that Little Bug and I both equally enjoy, if in different ways.

I picked up some dinner, strapped my baby to my back because we've both been enjoying the closer contact lately, and wandered to our secret shaded spot to eat and enjoy a bluegrass concert that happened to be playing (Little Bug and I both enjoyed it so much that I bought the CD). My baby choose to sit on my lap and eat his dinner....something he rarely does. I stared at his profile as the sun gently made it glow. I accepted many a compliment on his cuteness while he waved and blew kisses to passer-byes. We both enjoyed the wonderful train garden and officially reached "regulars" status with the old men who volunteer there. I thought of my son in Korea and my husband in New York, but I found that unlike the majority of the last 2 days, I only thought about how lucky I was that they were somewhere in the world and mine, not dwelling on the fact they weren't there with me.

Mainly, I just allowed myself to be present and with Little Bug. Lots of eye contact, lots of getting down on his level, lots of allowing myself to be wrapped up safely in the little world the botanical garden gives to us.

Being a mom is hard and often makes dealing with outside stress even more stressful. I'm grateful for my happy place, and I'm grateful beyond belief for the little soul who loves to share it with me. It's happy for me because of him.