Wednesday, February 19, 2014

Ordinary Good

Today was one of those days. No, not one of those days, one of those "You'd have to be the most depressed and/or ungrateful fool for not appreciating the weather today." days. Man, the weather was perfect spring-type weather, without whatever has been bugging the household allergies the past few weeks. I even forgot to take Zyrtec this AM, and I didn't sneeze one time! What is interesting only to me is that I was expecting it to be one of those days.

Scott left town yesterday.* Paul is in our bed every night, and the night before Scott left, he was up six times. Six. Yeah. I was sunshine and rose petals yesterday. I did, with a lot of prayers to my guardian angel and those of my children, take all five for haircuts at 6 PM. We also made it through bath/shower for the littles and a short snuggle with Paul and Molly. It was during that short snuggle that I told Paul that he would be sleeping without a light on that night. I explained that Important Scientists had discovered that having a light on at night tricks our bodies into believing it's daytime and time to work and play. He was actually very okay with the idea, but asked if he could fall asleep with the light and have me turn it off when I went to bed. Who knew he could be so reasonable? The result was a boy who slept until 5 AM and who asked that I leave the hall light off when I returned him to his bed for just one more hour.

For some insane reason I was able to get everyone breakfast even though we were out of waffles, and everyone got their respective duties done. I even doled out a few disciplinary actions that were received very well. (The on-duty lunch box washer didn't even run water over the lunch boxes and plopped them in the dish rack as though I would not notice the crumbs and smears when I made lunches. She now has lunch box clean-up for the rest of the week.) Little Guy was dropped off and we made it to school with time to spare. I then proceeded to Whole Foods where, for the first time ever, Little Guy was gleefully riding in the Ergo while Mae, who started the trip on foot, was happily confined to the cart. (She was running around charming everyone doing the AM stocking, but also became enamored with the glass oil bottles. The handwriting was on the wall. Crisis: averted.) I left Whole Foods having spent less than expected. Has that ever happened before? While I was in the store spring came to Jax, and I walked out to the most glorious weather imaginable.

This is where my mind did the thing where it reminded me that terrible things happen on beautiful days. Yes, 9/11 came to mind. Luckily, things had gone so well that morning with the kids that I swept that thought away with the thought that at least for this moment, life was perfect. Even a Terrible Thing couldn't rob me of what I had right then.

I went home to put my frozen food away and fed the baby and Mae on the front porch. Little Guy just wasn't hungry, so we packed up after a diaper change and went to our next stop; Costco. I think it may be a law that families with 3 or more children must buy certain things in bulk. I love Costco which is one more of the ever-growing list of "How I know I'm Never Going to be Cool Again" items. Also on the list is the conversion van sitting in my driveway, the fact that I own more than one pair of yoga pants and do not do yoga, and the phrase, "Life isn't fair." Once again, we had a great time at Costco. I'm guessing it was senior discount day with the number of older couples perusing the aisles. Many stopped to ask how old the Little Guy is and complement Mae on being a good big sister. This is one of those things I only correct if you are going to be a part of my future. If I am not likely to run into you again, I feel it's better left alone. Every second explaining that I am babysitting is a minute that I'm not debating buying a new steam mop I didn't know they were carrying, ya know?

The day went on in wonderful ordinary fashion of great weather, cooperative children and perfect punctuality. Now I'm sitting here writing on my blog that I hardly bother with any more and any reader who might meander over this way is wondering, "What is the point?"

The point is this; raising a kid with Down syndrome is more ordinary than not. Once again the internet is revved up with the new Belgian pediatric euthanasia law, and fears that it will be expanded to children with non-deadly disabilities. Some of the reactions are along the lines of, "You should wish for a child with Down syndrome. You should be so lucky." Once again I find I cannot relate to the insistence that Down syndrome is a blessing for those who have it. (For those of us who love someone with it, it certainly is!) Once again I think of what Mae seems to want in her life, which is to be typical. This time I wonder if the ordinary is what will make us understood. What if the ordinariness of life is what conquers the fear of Down syndrome? What if we just told the truth?

The truth is that you get into your routine just like with any other child. The truth is your child will need to be special and not special in ways that will confuse and challenge you. The truth is you will be happy with progress, no matter what it looks like or how commonplace it is. The truth is that most days you will think more about what to make for dinner than your baby's condition. The truth is that laundry will irritate you more than that extra chromosome. The truth is that this is what raising a child, any child is like. There are good days, bad days, great days and ordinary days with awesome weather that will remind you that life isn't about being happy, it's about being satisfied with what is good. Life isn't fair, but life is good.

*Normally I wouldn't advertise that Scott is out of town, but since there have been some local break-ins, our area is under constant surveillance. Also, our dopey looking dog will tear out your throat if you threaten her babies or her meal ticket. True story.

Thursday, February 6, 2014

Quick Takes That Displays My Peculiar Brand of Crazy

I was fired by an OT this week. That may sound dramatic once I flesh out the story, but it's reality. Mae's in the early intervention public program that provides certain therapies to us until she is three. Her OT at Hope Haven suggested we increase OT to twice a week and perhaps see about doing that through Early Steps so that I wouldn't have to drag her to another therapy another day of the week. It's been over 6 months of exploring that option which resulted in parting ways with one OT who never touched Mariana once, and who would say things like, "Well, she's going to be delayed. She has Down syndrome." anytime I would ask about teaching her a new skill like, say, holding her own cup.

At last we had a new OT assigned and she came on Friday into the Mama bear den. In my defense, I felt it was necessary to come at her both barrels because Mae will be two soon and only has one year left of at-home therapy through this program. It's be eight months to get this particular service. We don't have this kind of time! So I gave it to her straight. I won't be remodeling my home to accommodate her. I won't be carving 15 minutes out 4 times a day for OT. I want to know what we are working toward. I want practical homework. I want you to push us both. I want you to treat her as a person rather than expect her to do things because she has a diagnosis. You have to actually do things with her.

It was a lot, but we have a life and we need our child to be able to function in it. She must drink from a cup, and so I give her one. She must eat with a spoon and fork and keep her plate on her tray, so we work on that. She must dress herself at some point, so we try to have her do as much as possible. She may be delayed, but that doesn't mean we don't work. You may have awesome therapy techniques, but if they can't translate into daily living, then they won't get used much. We don't spend tons of time playing in the play room. And guess what? That's normal. Life is therapy, so teach me to weave the therapy into our lives.

She was very receptive to everything I had to offer. Shortly after she left I received a text from my primary service provider that the OT couldn't find time to see us. Message received. Moving on.
Mae has a new, but familiar OT at Hope Haven, Mr. M. He's her hands-down favorite person there. She basks in his attention. We can not wait to start with him. This change allows her previous OT to attempt to see Mae through Early Steps. We really like Mrs. A, and have been gunning for this all along, but she is very ethical and said it presented a conflict of interest. If she recommends 2x a week, and then gets Mae through another program, it can be seen as double-dipping. Now that there is not conflict, we hope it all works out. It helps that Mrs. A is used to my brand of crazy and has already seen me cry.
My parents came to visit and my mother, God love her, did laundry non-stop. I mean, we are talking wash and fold. So I am trying to keep up. I used to love doing laundry. I am not sure when that changed, but it has. I also used to love to iron. If I had tons of money I would like to imagine that it would all go to the poor, but in reality some of it would go toward hiring a laundry service.
In our home I am known as somewhat of a stickler for doing things well. Good enough isn't. This is one of the reasons God wants me to have a big family. Good enough has to be good enough when there are so many humans whose existence demands they ruin all the things, leave all the lights on and sleep in one bed with all of their joints lodged into one or both parents. Thus this story is about me doing a project "well enough" only to have my father vindicate my usual stickler attitude with his own.

I painted the girls' room. I primed and painted the girls room in two colors, lavender and teal. I set up two lofted beds with desks. I also did this in three days time. When my parents came to visit the girls were very excited to show off their new digs. The next day my dad was making a shopping list and asked if we had masking tape.
"We have painters tape." I answered, wondering if that would do.
"You have painters tape?" he asked.
"Yeah, it's in the garage."
"Then why didn't you use it in the girls room?"
This caused me to crack up laughing because it was a perfect parent-dig. I still don't know if he meant it as a dig or if it was a real question. It was also a perfect mirror to a conversation that Scott and I may have possibly had in the past. Let's put it this way; Scott found that conversation explained a lot about me.

So, I'll be doing some trim work this weekend. (No, I won't. The girls don't care, so neither do I!)
Let's talk about 5 year old boys playing basketball. It is irritating to me that some of these boys are focused and intentional and my kid is lying on the floor pretending to have been blasted by the alien shaped like a basketball. It irritates me that my kid is normal and these freak athletic and focused children are making him look like the freak. Also, these parents that pay attention at practice annoy me as well. Who cares about practice? I've brought my kid, I've done my duty. I did not sign up to coach, I stay in case of emergency, and I noticed when he was absent from the court and had the presence of mind to ask the coach where he was. He was in the bathroom. There. Mission accomplished. My kid might be a great ball player and he might not. I sure can't tell at 5, and I don't care to plan his career at this point. I'd just be happy if he would stop break dancing on the court.

To be fair there are plenty of kids just like Paul on his team. The team has kids ranging in ages 3-6. It's crazy to think that this was a good idea, but that's what you get when you sign them up for a church league. Everyone gets a shot, even the weird kids.
I found a retreat I am hoping to attend. For this to happen LOTS of things have to fall into place. It's an impulsive decision, but I think a good one. It's not religious, it's for moms, and it's not for moms of special needs kids. It seems to be just one big fabulous girls' night out.

It is a little surprising to me that I do not feel the need to justify this. I told Scott about it and gave no reasons why I want to go. Of course he was supportive. I have actually begun to justify it to myself and made a conscience effort to stifle that. I don't want to justify why I need this. I don't want to list all of my responsibilities and my habits of not taking enough care of myself. It's the same old song for every parent in all of history. I want to go to this thing because it looks fun and it's not with anyone that I know. When I say I want a retreat, I mean from everything familiar. I want to have myself a little adventure, and it feels great not to have to bemoan this life I love in order to feel like I deserve it. I don't deserve it, I desire it.

Too often, probably because of the culture of entitlement that we live in, we feel that all of our desires are somehow too selfish to be satisfied without a litany of justifications. I don't think that it has to be that complicated. If you are a well adjusted person with a modicum amount of self awareness, finding something that ignites interest and won't place undue burdens on others is a great thing to explore. Fun is good for the soul y'all.
We have decided to homeschool Kate for next year. This is not a commitment we've made lightly, but the kiddo is excited. She's so adventurous and has a million things she wants to try. We've worked out her music and PE credits, well mostly. We want her to take martial arts, she's committed to tennis. Nothing is perfectly easy.

I informed the school, and I have to say that I was really happy with the conversation that the principal and I had. He's a good man and a great administrator. He has been very supportive of making sure that Kate's at least on par with the school just in case we decide to have her return. I think we may well do that, but I'm taking it one year at a time. He gave me great advice regarding her independence as a student. I feel very blessed to have this school in our lives. None of the other kids are interested in homeschooling and I'm good with that. One at a time seems just like my pace at this point. I'm excited and nervous to see where this next school year takes us, but we've got a few months to go with this one, so I'll be patient.
For more Quick Takes, visit Conversion Diary!

Wednesday, February 5, 2014

Turning Pages

I'm not sure where to begin. So much has happened, so much good and so much sadness. We've lost a few people in our lives, which has been harder as Mom and Dad to little ones than as ourselves grieving the loss. Two of our kids are particularly sensitive, and nothing feels so helpless as watching a beautiful, sweet soul become so painfully aware of death. One cries openly and takes comfort in faith. The other, too little to be so philosophical, makes the uncertainty known with "what-if" questions and the desire for more attachment. All four of the "bigs" seek normalcy and stability and are a little more aware that life isn't always protected by love.

Scott mentioned that this is the place we are in our lives, the place of losing people we love, grieving the loss and being forced to march forward in love and light for the little people who watch so carefully. I don't think either of us was prepared for this level of unselfishness. How does anyone put aside grief and fear of our own mortality? I can't answer for anyone else, but the smooth round cheeks and big shining eyes of my children help. The idea that I want their last memories of me to be those of a patient and generous soul helps too. However, even that thought can stir up resentment that I feel such pressure to be perfect out of fear. It's a question that has no answer except to continue on trying to be better at everything, even grief.


I just read this and this. It struck me right down to the marrow of my bones. Mae is love and light. She is one of they, as in, "They are so sweet!" While she can snap like the best toddler with a, "Don't touch me!" babble and finger wag at the Costco employee who couldn't resist, she is mostly Madame Mayor complete with parade float wave. The worst part, for me, is the constant need not to make a fuss. Everyone wants to give her what she wants, thinks she is so cute and chastises me for being strict. I don't want to fight with everyone. Also, she's not even two. But then again, she's almost two and she acts like it in part because we don't treat her differently. (Also because she was born contrary.)

All of that has been running through my mind while we've been in the midst of another tooth-a-thon. Mae is getting two more molars. (How many can she get at this age?!) She is also battling a cold, so it's Congestion Junction up in this house. During such times she can go rather dormant and just want to be cared for, held and sleep. I've rocked her so much the last few days I find myself rocking in four legged chairs just out of habit. Therapy was a disaster this week, but for one thing the OT said. Mae was doing cold water therapy, because swim lessons are on the horizon, and she was having none of it. It was not defiance so much as she just didn't have it in her. Mrs. A wrapped her up in a towel and she rocked her. Eventually Mae slid off and toddled over to Mr. M, her official favorite, and snuggled him. It was then Mrs. A told me that sometimes this is better than therapy. When it's clear that therapy isn't going to be effective, nurturing that relationship can serve to show Mae that they care for her. In short, snuggling is therapy too.

I love that last sentence. Most days I'm running around analyzing my children and their needs. These last few weeks, with the deaths and the illnesses and the excitement of basketball and a birthday and a visit from grandparents, I've noticed who is in a good groove and who needs a little extra attention. What I have noticed most is that each of the five needs more snuggling. When I've made a point to pull them in they get a little steadier for the next few moments, and so do I. Snuggle therapy has been added to the routine. After all, life is therapy, and life is so much better with lots of snuggles.


Molly is brilliant. I don't say that to brag, that child is something special as it is. I say it because people other than me are starting to notice, and I only began noticing this year. Shoot, two  years ago I was considering holding her back in pre-K. Thank goodness her teacher knew my concerns were a matter of Molly's reluctant work ethic rather than her ability to do. This year at her conferences her teacher expressed some concerns about Molly keeping up when things got a bit more challenging. I didn't say it then, but I was thinking, "She's smarter than you think." I knew her teacher was exactly where I was two years ago. I discovered something this school year: Molly will work to reach a goal, but will never work to avoid negative consequences. When I realized this, I have to admit, I was thrilled. I used to worry about this girl and her apparent lack of desire. There was the greatest sense of relief once I realized she was lacking passion because she was lacking motivation. 

The battle, of course, has been to discover what inspires her. We tried money, but Molly isn't one of those kids who can earn a penny-per-task and extrapolate that into saving for, say, ice cream on Saturday. (She was getting a penny for everything, from brushing her teeth to getting dressed to emptying her backpack. You bet she could earn enough for a little $1.25 container of Hagaan Daaz.) So, we moved on to a big chocolate bar. That worked. For 7 days she was compliant and helpful, two adjectives that would formerly be in the "antonym" category for Molly Descriptors. (Not that she is bratty! Molly's awesome at flying under the radar and not being confrontational, but also, not doing as asked. When asked why she didn't do something, her frequent reply was, "I forgot." and walk away.) Since that experiment I noticed her presence more when it's time to clean up, and I notice a happy patience when she has to wait for what she requested. Molly's a quick study, that's for sure. It's really too bad her Mommy is so slow on the uptake. 


Ten. Kate is now ten. I can see that we are on the cusp, that the tears come a little too easily, but the sweetness is closer to the surface too. I see the posture changing, the verbage evolving and the ability to weigh outcomes maturing. She's so pretty and completely clueless and a little awkward. She doesn't like boys yet either, but I know she won't volunteer the information when she starts. Her cheeks are still full, but her jaw is a little more defined. 

She's asking questions, great ones. Often I'm not prepared to answer her, but I tell her and she understands. Sometimes you want to be careful about your words and string them in a way that makes sense. She gives me space to think about it. She cares about her friends a little too much, and she's starting to protect her siblings by helping them with their messes before I see them. I catch her absently stroking the dog while reading and am caught by the beauty of the moment she won't remember.

Her room has been painted and changed, she has her "space" carved out with her own desk. She does her homework in her bedroom now, with her sister at the desk next to her and the door shut. She remembers to shut off the light sometimes, and she asks to vacuum on ocassion. 

A decade of raising a baby into a toddler into a little girl into a girl. What's next is so close I can feel its presence and see flashes of it in her tilted head and her furrowed brow. For now she is just a girl, a magnificent and perfect girl. The old preschool song is wrong. 3 isn't the magic number, though there is a magic number, and it's 10.