Friday Night Leftovers

I had to put my cat to sleep today. She was my first baby; the "baby" we got right after we got married while I waited for Is.aac to be "ready" to start trying for kids. I doted on her during treatments. After the big boys came home, she would come get me if one even looked like he might start to cry. She slept in their room, under their crib, for an entire year. She would appear out of nowhere any time I felt sad. She was pretty amazing.

I miss her terribly already.

~~~

Thank you for your comments about the last post. I will admit that I am not exactly sure how I would handle that situation when it happens the next time. I didn't mind the comment from the little girl. She seemed to come from a genuinely curious space when she asked it. I didn't care for her word choice of "What's wrong with him?" and I would probably have started with that had I had a chance to respond to her.

Because nothing is wrong with him. His legs work differently, yes. Is it wrong? No.

The hurtful part for me was the mother's response. She made it seem like Ja.son using a walker was some sort of catchy disease. It was more than she was uncomfortable. I don't even want my mind to go to what her response implied.

Sigh.

When I have a clearer idea in my head about how I would want people to respond if this was a perfect world, I'll write about it. Sometimes I feel like I am walking a mine field. I never know exactly what it is I need to look out for until I've stepped on it. Obviously I hadn't thought about this kind of thing until it happened. Now I have to go back and figure out how to handle it in the future. More importantly, I need to figure out strategies to help the boys handle it for themselves in the future.

~~~

We took the boys to the orthotist to get fitted for new AFOs today. They had to have their feet and lower legs casted, which is painless and relatively quick to do, but it was filled with the drama anyway. Ja.son was pretty chill about the whole thing. His concern was what pattern he could pick for them. (Superman, if you can believe that.) Sh.awn was NOT having it. He was tired from therapy earlier that morning, so he just let it all loose--tears, screams, the whole shebang. Fun times.

We should get them in about three weeks.

~~~

We had another snafu with the orthopedist appointment. I called only to be told that the doctor didn't do "anything with spines," which WTF? Actually, I told the receptionist that the boys had CP and she asked what that was. Um, even if he did "do spines" that right there would have scared me away. How can you be an orthopedist and not deal with spines. Grr. We're back to the beginning with this.

I am waiting for a call back from radiology at the Children's Hospital. We have to have CT scans. (Yippee!) Once I have the radiology appointment (should get a call back in 2-3 weeks-yes, weeks), I have to call the neurosurgeon back to try to schedule an appointment with him for the same day.

Once I have the neurosurgery appointment, I can make the neurologist appointment. Maybe I'll have the orthopedist appointment set by then, too. At this rate, it's not looking good that we'll get everything done this summer.

I hate the medical world.

~~~

But, things are still chugging along. We've been slowly checking things off of our Summer Bucket List. The boys and I have got ourselves a routine, so the days are definitely better. Overall, things are going well. Whew!

~~~

Stop by Danifred's for more Leftovers.

School Angst

I always know it's nearing the end of summer when I have my first school dream. 

The dreams are always some version of me being in my class trying to teach when some absurd scenario begins to play out. I fight to retain control of the class as catastrophe and catastrophe happens. By the time I wake up, I am in a cold sweat from what feels like hours of barely hanging on to my sanity. Then I text my teacher friends and we all laugh about our crazy dreams.

I've had my first school dream this week. This time, however, it wasn't about me surviving the day from hell at school, it was about the boys surviving a day at hell at school. Only this time I didn't wake up and laugh about it.

Instead I woke up and cried.

Now that summer is here, my angst over the boys starting school in a few short months approximately sixty days has gone into overdrive. I think they are more than ready for the academics. It's social acceptance that make me panic. Stories like this and this (and their comments) have kept me up at night. I want so desperately for my boys to have friends and do fun things with their peers. I want them to be included.

I want them to thrive and love school. The social aspects are a big part of that.

~~~

Yesterday, we walked to our local park. Ja.son was using his walker, and by the time we got there, he was starting to tire. His pace had slowed down; his footwork was sloppier. We walked up the path to the play area and passed a family who was on their way out.

"What's wrong with him?" a little girl asked her mother once they were a few feet behind us.

"Shh!" her mother hushed as she hurried the girl toward the street.

Ja.son never acted like he noticed.

I did, though. While I suppose it was an innocent question, the way the mother reacted made it seem so much worse than it was. Her harsh shush got to me.

My skin still isn't thick enough to deflect that kind of situation. Obviously, I'm still thinking about their exchange about my boy. That little girl would never invite my boys over to her house to play. Her mother wouldn't allow it. How many other mothers will be like that? How will that kind of interaction (both directly and indirectly) affect Ja.son and his brother.

Have I done enough to counter all the blows the world will throw their way?

~~~

In a lot of ways, I wish I could fast forward through this year of school, put this year of kinder under our belts, so to speak, and know for sure that everything will be okay.

I like knowing the ending of things. When reading a book, if I get to a point where the story could take a turn I don't really want, especially in stories that are too close to home, I go to the end. If I know how it ends, it makes the tension of drama much easier for me to digest. Sometimes, that's the only way I can read to the end.

I just need a peek at the end of this year's chapter. I want to relax and enjoy the story.

Friday Night Leftovers

The last couple of days were somewhat better, so I think I am on to something with this whole schedule thing. Yea.

~~~

Ja.son deliberately lied to me yesterday. Twice.

Oh my heart.

I knew he was lying at the time, although I couldn't get him to admit the truth in the moment. (Yes, Sh.awn was there to rat him out, but I would have known he was lying just by how he looked when he said it.) I later got him to confess, and he was remorseful, but still. We have many more discussions about trust in our future.

~~~

My hair is falling out. Sigh. It just isn't right for your hair to fall out without the snugly little baby to come with it.

I'd be out of the first trimester by now. You know, if I was keeping track of things like that.

Also, if I was keeping track of things like that, I'd know I am on cd21 and should start af in a few days. I'd know that I would test positive by now if it was going to happen. I'd also know that I wasn't testing positive. If I was keeping track, that is.

I hate that I want to get another chance at this.

~~~

I think I need to stop thinking now.

~~~

Stop by Danifred's for more Leftovers.

Transition Pains

Nothing reminds you that your are full of crap like a dose of reality--or in my case several days worth of doses.

Apparently I underestimated how the boys' transition to having me around full time would go. I also didn't anticipate how much I would struggle with being home among people who constantly fight, yell, and generally make everything a hundred times more difficult than it needs to be. I suppose I envisioned we'd get right to the business of having loads of fun! and getting along! and doing amazing things! the second vacation started. Okay, fine. Maybe I wasn't naïve enough to believe we'd all be shitting rainbows, but I have to admit that I just wasn't expecting the drama.

Holy Hell the last several days have been painful for all of us. It's been six LONG days, people! (All of you stay at home moms can laugh now. It's okay. It won't bother me.)

I've been called mean. (But was told I was still loved.)

They've told me far too often that they were bored even though I'm trying to mix it up and keep things interesting. We went on a treasure hunt one evening. We've played outside in the dirt. We've done bubbles and art and watched movies and read.

Sh.awn has made it his mission to annoy Ja.son in every way possible. If Ja.son is building a traffic jam (or whatever it is that he's doing), Sh.awn tells him he's going to mess it up. He'll make moves toward Ja.son to act like he's really going to do what he says. That sends Ja.son over the cliff. They yell.

Sh.awn finds a toy that's been out of circulation for a bit, and Ja.son will make it his mission to take the toy away. Sh.awn freaks out. They yell.

Jack is in the stage where he has a meltdown any time I have the nerve to utter (or even imply) the dreaded "no" word. He does not want to be redirected. He wants to do what he wants to do. The boy is two. He's into everything. He climbs. I end up having to say no a lot. He has a lot of meltdowns.

Lather. Rinse. Repeat.

I feel really bad because I shouldn't be this crazed with only three kids. I mean, I regularly have 40 students around me at any given time, and I swear I get less stressed than the last six days have made me!

It hasn't helped that we have had an appointment every day since vacation started.

Sigh.

Yesterday I broke down and went to Target to get a whiteboard. Knowing the big boys do so much better when they know what's coming, I wanted to have a way to write the daily schedule for the boys to look at. I figured not having to answer that question three million questions about when we are going to do xyz would go a long way toward protecting my mental health. Ahem. I also wanted to be able to schedule time for me to get something done around the house without them asking for me to stop and play give them a designated time for solitary play.

Day one was yesterday. I managed to keep my sanity.

Day two was today. It was a much better day. I didn't feel the need to run for cover the second Is.aac walked through the door. Score.

I'm keeping my fingers crossed about tomorrow. It will be an appointment free day for once.

Happy Father's Day!

Happy Father's Day to the best dad around!



It's been quite the journey, but boy do we have some amazing little wonders to show for it. We're so lucky you're ours!

Friday Night Leftovers

The best news of the week, hands down, is that the boys were accepted into our school of choice! One thing that pleases me, and that I wasn't aware of until after we applied for the intra district transfer, is that the school is the district GATE magnet. It won't necessarily come into play for a year or two, but I do think that it will be a factor in the boys' future. I'm glad that they'll be at a place that regularly works with gifted students, because the gifted child does have some unique tendencies/behaviors (that I already recognize in Ja.son).

This will also mean that Sh.awn will have one of his biweekly therapy sessions during the school day. Oh how that will make a world of difference for the family schedule. Then Is.aac and I can alternate attending the weekly session when both boys have therapy.

It's all such a huge relief that they got accepted at the new school. Huge. Whew.

Now we get to start thinking about the logistics for next year. There is a lot to try to put into place before they start, but one of the biggies is transportation. Is.aac will take them to school, but it will likely mean that my mom will need to go pick them up from school. She isn't keen on the idea of driving them anywhere.

~~~

The last day of school was yesterday! Yea! I think I have somewhere around 74 days until I go back. Ahhh...

Let's all hope next year is a bit easier than the year I just had, okay? The last one was pretty rough.

~~~

Swimming therapy starts on Monday. At 8 am. In the morning. It seems a little obscene to make me haul my butt across town to be at an appointment that early in the morning, but it is what it is. Sh.awn is up first. Ja.son's appointment is on Tuesday (at the more sane hour of 11:30). Our second week of swim therapy will be better with the boys piggy backing appointments.

The one issue I've found is that they will only book appointments up to two weeks in advance. So, I'll have to call every Monday morning to try to set up appointments back to back for the dynamic duo. That doesn't exactly sound like fun, but I guess I have to do what I have to do.

Fingers crossed that I see some great gains in their strength, flexibility, and stamina from all of this.

~~~

I have no idea what to do for Is.aac for Father's Day. I've asked if there is anything he wants, but he doesn't have any ideas. I hope inspiration strikes me soon. I'm running out of time on that one.

~~~

Still coughing. I think this is around the third week now? I had the fever over Memorial Day weekend, so I guess so. My ribs are killing me when I cough. Ugh.

~~~

Good grief, Jack is a busy boy. In the span of ten minutes, he had played in the toilet and managed to empty a bag of diapers and put it over his head. This was after he gave me a heart attack by choking on a bite of peaches. He's like that all the time, and the big boys don't help me in any way. All they do is give Jack more opportunities to scare the crap out of me. I'd be totally gray by now if I wasn't already dyeing my hair. Seriously.

~~~

Oh my. Have you seen this video that is floating around Facebook?



I've watched it a few times; it makes me cry every single time. The way they look at each other as if the other is the only one in the room just melts me.

I used to sing that song to my very sick preemies. There was the morning I went into the NICU to see Ja.son, who had coded, seized, and was bagged twice throughout the night, covered in electrical wires for an EEG. They didn't know what was wrong with him at the time, but we did know he was one very sick little boy. I held his finger, probably the only part of him not covered in some sort of medical device, and sang him this song over and over and cried through the "Please don't take my sunshine away" part every time. I sang it to Sh.awn every time we were in the hospital during those very dark days. I distinctly remember smelling Betadine in his hair while I held him and rocked him all night.

Funny how a video of two people singing to each other can trigger so many memories of my own.

~~~

Stop by Danifred's for more Leftovers. :)

Multiples First

On the Lost and Found today, there was a posting about starting up a Parenting a Special Needs Child After IF room on the Stirrup Queen Blogroll. For all intents and purposes, I suppose that I could belong to the group of those parenting special needs children after infertility. I mean, the boys do have CP.

My boys may have more specialized needs than some other kids their age; those needs aren't what I think of first when I think about them.

Instead I think about my three amazing boys--my twins and singleton. I am a mom of multiples, and while it is much more common now than it was twenty years ago, it is still a unique experience. I carried two babies at the same time, survived my attention and heart being split for months on end between two hospital beds, soothed a child with a foot or elbow because my hands were tied to caring for another, felt the guilt of hearing a child's inconsolable cry because his brother's needs were more immediate, and became a master at juggling the needs of two fairly complicated (at least initially) children. I've worked to find ways to give quality individual time to my boys while at the same time fostered opportunities to do things together as a family.

Having multiples is intertwined with how I came to be a mother. I wouldn't have one without the other.

It's something I would say to someone I just met. "Yes, I do have children. I have five year old twins and a two year old."

After asking more questions, one of which was whether I'd still be listed on the Parenting Multiples board, I decided not to be added to the special needs list because I couldn't be on both.

In my head, I am a multiples mom first.

Friday Night Leftovers

Last week brought closure to two really big projects that were going on at work. It was such a relief to have them finished. Now all that's left is closing up my classroom, promotion for the students, grades, and completing a end of year report for a grant that I received. Four days...

~~~

Finally, it looks like I can set up the schedule for the boys' swimming therapy. Two weeks ago they (the Easter Seals) called and said that they had an authorization for Ja.son but not for Sh.awn. I could go ahead and set up a schedule for Ja.son. Um, no. Why set something up for one when I would have to redo everything when we added the other into the mix? I need to make sure that both boys are on the same schedule or adding this therapy won't work for our family.

They called us yesterday to say that they had the second authorization. Yea.

~~~

Is.aac took the boys to their regular therapy on Friday to learn that they dropped Ja.son's therapy to one day a week. (a half an hour of PT and a half an hour of OT one day a week rather than two days a week) While I knew that OT was something that would soon drop, I am surprised and annoyed that they are dropping PT.

Plus there is the whole changing the amount of therapy he'll receive and not telling us part of the equation.

UGHHHHHH!!!! I am so frustrated with all of it.

~~~

Still sick. Annoying.

~~~

Today I asked Sh.awn where he lives. I was looking for him to tell me the city we live in only he surprised me and said Disneyland. Ha. He wishes.

~~~

I got a flyer through my email at work that was asking for volunteers to help developmentally disabled (physically and/or mentally) kids through age 21 learn to ride bicycles. It's a one week, 90 minute a day commitment. I so want to do this. I am hoping I can talk my mom into watching the boys for me so I can.

~~~

I sent Is.aac to the store to find me "something chocolate." He came back with chocolate fudge cake. Score!

~~~
Stop by Danifred's for more Leftovers.

Control

I have six five more work days until vacation. Counting down the days is all that's getting me out of bed in the morning. I am still sick. I am stressed. I am cranky. I am overwhelmed with all that has to be done and oh my god I don't have enough hours in the day to do everything that must be done right this very minute.

The past few weeks have not been good.

It feels eerily like I am caught in some sort of mental rip current. As much as I struggle to get back to the shore, I look up to find myself even further away from my destination than I was just moments before. I know I'm supposed to swim with the flow until I am able to break free from its clutches, but man if doing so doesn't go against every fiber of my being. My usual instinct is to fight. It's what I do.

The thing is, I am tired of always fighting.

Unfortunately, I have wound myself so tight that I can't seem to do anything productive. With so much to do, I find myself doing is a whole lot of nothing at all.

In essence I've mentally given up even attempting to float out of the channel, preferring to just let myself drown.

Sigh.

Starting summer break is going to make a huge difference, I know. As much as I love my job, I am depleted of virtually all my energy by the end of the school year.

I've started my list of things that must be done yesterday as soon as possible so I can visually watch the stressors start to dwindle down to nothing.

Maybe that will help give me the sense of control I am so obviously missing right now.

More Work to Do

I am surrounded by newly pregnant people. There are ultrasounds to discuss and plenty of morning sickness to sympathize.

It's tiring.

I knew a whole new can of worms would be opened after all of this. It's one thing to want it but not really expect it. It's quite another to want it and have proof that it could.

With this month's appearance of my period, right on cue I might add, I was shocked at how crushed I felt. I had been holding my breath...hoping, more than I realized actually, that the miracle would happen again.

“Remember that not getting what you want is sometimes a wonderful stroke of luck” (Dalai Lama)

I'm trying to get to the point where I feel like this.

I definitely have a lot more work to do before I'll get there, that's for sure.

Friday Night Leftovers on Saturday

Nine more days of school. Nine more days of school. Nine more days of school...

I can't wait.

~~~

Where has this week gone? Seriously.

The sick is still around, but thankfully, I am the only one with it. The fever and headache are gone. Now I'm left with fatigue and a nasty cough. Yuck.

~~~

On May 11, we got a notice that the boys' pediatrician would be closing her office at the end of May. Since then we'd been in full on scramble mode trying to get authorizations and prescriptions the boys will need for the summer. I also asked for a full copy of their medical records, which copying is no small feat I'm sure.

I had them fill out the paperwork to apply for a handicap parking permit. I don't know if I can bring myself to use it just yet, but I suppose it is time that I start wrapping my mind around the idea.

And then at the very last moment, I found the name of another orthopedist and asked to see if they could squeeze in authorizations to go see the new doctor. (We have auths to see the old orthopedist, but he leaves something to be desired. I am hoping this new doctor will bring new eyes to the situation and actually give us something we can work with.) I could have kissed them when they told us it would be no problem.

So this summer will be full of medical stuff and checking follow-up appointments off of our list for another year.

~~~

I posted this on the other blog, but my boy just makes me happy so I'm posting it here, too. :)

~~~

I get hives from hormone fluctuations. Sometimes I get hives mid cycle. Usually, I get hives the day or two before my cycle starts and they'll go away once I bleed. (Does anyone else have this issue?) I brought it up to my RE back in the day, but he only looked at me like a had a third eye while I talked about it. In the end, he said that if I thought the hives were hormone based, they probably were and left it at that.

I've been hiving off and on all month long. I imagine that it's because my hormones are all out of whack after the miscarriage, but who knows. I am going crazy with these things.

~~~

Is.aac just had me come look at Jack in his crib. The boy was stark naked. His poor little tush was freezing! He let me flip him over, put a diaper and his pajamas back on, and slept through the whole thing. Man I wish I could sleep like that!

~~~

Stop by Danifred's for more Leftovers. She's defending her dissertation on Monday. Wish her luck!