I Love My FamiLee

This is what picture day is like for us. We finally chase everyone down and get them in nice clothes that match and their hair is fixed. Then we strap them into the car and talk to them to keep them busy and their hands out of their hair. We tell them as nicely as possible that they better smile at the right time and not make a fuss. Then we get there and it's a lesson in patience to get them all facing the same direction and happy enough to smile at a camera on a tripod. I tell Gracie that not everyone is as patient as Mommy and that she really needs to obey the first time. Amazingly, more often than not, she sits back down just as the shutter clicks.


The first spot picked for picture taking was nowhere near wheelchair accessible, but really nice for big groups, so we took Becca out of her safety zone (read: wheelchair) and tried to sit her supported on a stone step. During individual family pictures, she and I went for a walk so we could "come back to center" after some tears on her part. It upsets me when she's upset and we both needed to walk in the quiet and take deep breaths. She still wasn't very calm when we got back, but it was our turn. She teared up some more and between that and wrangling so you could see everyone... well, it's a lot like herding cats. That's probably part of the reason you can see tear shine in Becca's eyes.

Then, finally, we get to see Becca smile. It's when she's holding her brand new baby brother that her Spirit shines through. It's when they are heart to heart that hers sings. To say that our lives do not revolve around our kids would be completely false. It does and theirs orbit ours, too. We cross often and remain concentric always, but it is true that just about everything I do is for them or because of them or with them... I just have to keep reminding myself how not normal we are and we never will be. We are our own kind of normal. And normal for us means trying for that perfect family picture and accepting that it might not be as great as the little moments you capture by happy accident.

We got some really nice family pictures this day and it's no one's fault that Becca was sad. She does really well making sense of her world with her limited senses most of the time. Who can blame her for feeling insecure once in a while in a new place with new sights and sounds and feelings when the receptors for such information are buffered and hindered by a body one off from the norm? I certainly don't. I do everything I can to help her make sense of her world and protect her from too much all at once, but I am only one person and I really like to document our history with pictures. :)

A BIG thank you to Paul for taking these pictures and for being willing to do it over and over. :)

Hamster in a wheel

One more week that we didn't sell our house in. I'm going bananas. I find disappointment in the smallest tasks because I'm still washing my hands in the same sink, vacuuming the same carpet, driving up the same driveway and I want so badly to be in a different house that is closer to Geoff. If we were closer, he would even be able to come home for lunch once in a while. We could go on dates and to the Temple more often. I wouldn't worry about all of the road and all of the cars between here and there. He wouldn't have to fill up his gas tank every 4 days. It would strip away a heavy layer of stress. It would... We could...

But, you see, I know it's not healthy to live on the woulds, coulds and somedays, but an even bigger BUT is that I can't seem to help it. It's like the proverbial carrot on a stick- always there in front of me, but no matter how many steps I take forward, I never reach the carrot. And lately, I feel like I'm standing still while the carrot somehow moves further and further away. I mean, what can I do besides sit in a clean house that is ready to show? Short of standing on a corner with a sandwich sign that says "Buy My House!" Talk about a lesson in futility. There's just not much I can actually DO to make our house sell any faster.

They're coming to get the portable storage unit today. We've packed away so much stuff! It helps keep the house clean, but it's been in there long enough and we thought we'd be gone before now, so we're starting to miss things. Things like Halloween costumes, the tote with the coats in it, the maternity clothes (for Heather to borrow). How soon before we need the high chair, and some of the other baby stuff we packed? All of the Christmas decorations are in there. It looks like our house is going to be very bare for a very long time.

9 Years

"I've never been married to anyone for 9 years before." That's what my husband said yesterday morning as we woke up to our 9th Anniversary. I haven't either. I've never had nearly 4 kids with anyone else before either. :) When I step back and look at it that way, 9 years and 4 kids makes me feel really old. But I don't really feel old. I still feel like me. I still like root beer flavored popsicles. I still don't particularly like swimming. I still love to try fixing my hair in different ways. I still care a lot about what people think of me and getting dressed still has a lot to do with the "image" I want to portray. However, I'm not afraid of the dark anymore. I'm in charge of more people than just myself. I'm involved with large (in comparison) amounts of money by managing it and hopefully spending it wisely. I feed and clothe other (smaller) people than myself and help them through their fears of the dark or the water.

I never understood my Mother until I became one myself. I hear her words coming out of my mouth every single day and they make complete sense now. My girls have the same reactions I did to them back then, though. Eyes rolling, breath huffing out in an annoyed fashion, posture changing to that rounded back, defeated pose of one who has been asked to do something that they should have done long ago. I've induced more whining than I'd like to admit and it's WAY annoying! I shudder to think how my Mom must have felt listening to me do that.

I must say just about the greatest feeling in the world is being the person that tearful eyes search for at the park... the one that gets all kinds of hugs and kisses and countless snuggles when a little one is having a hard day... the recipient of excited phrases spoken in triumph when a goal is finally reached. There's really no other feeling greater than being called "Mommy."

I turned 30 this year... something else I never actually visualized doing. Not that I thought that I wouldn't, but that it seemed so far away! Now it's here and it happened so slowly, I didn't even notice. My 4th child is due in 9 more days and assuming everything goes well, we will finally have our boy! I am beyond excited! I guess I'm one of those people that is happy and excited a lot of the time because I feel like NOW is the best time of my life and I remember having this feeling before! :) Life is SO meant to be enjoyed!

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Seizure-land

Well, we've officially changed addresses and made a full move to Seizure-land. Rebecca (Becca) turned 6 in January and had already had an "episode" or two. As we have gone down several avenues with our hands out in front of us trying to feel for an answer, we are on seizure meds (Trileptol), getting a g-tube and we're having a sleep study done next week, which I already believe will show serious problems. I have got to figure out a way to get some back-up oxygen in the house for when she has trouble. I was told her oxygen levels have to dip to 80% to have insurance cover extra oxygen at home. I'm sure she's been there, she goes blue for goodness sake!, but no one has been there with an oximeter in their hand when she does it.

We sailed through the first 5 years, we really did. The worst thing we went to the doctor for was a bad cold or a urinary infection. Every year in school we see big improvements in her awareness and initiating communication and just overall happiness. Every little thing makes her so happy! And then these nasty old seizures come along and ruin everything. And after reading and researching on my own, there's no turning back, no miracle cure. It will just slowly get worse and worse, I know that. I don't have to give in to it, but I do have to accept it. Last night she wasn't feeling good, I have no idea why- maybe the various chemicals coursing through her body were making her uncomfortable, but as soon as I went in to her room and talked to her, she smiled! She smiled that "I know you're here Mom and you love me... please make it go away." I can't always make it go away and that is the number one hardest thing for me. Walking through public, myriads of doctor appointments, even procedures don't faze me anymore; it's the look that she gives me- that perfect childlike trust that everything will be better if Mom is there. But I'm not magic, I'm not a miracle worker and I can't reach in and fix things even though I know what could be "fixed."

Most of the time I feel like Becca really gets a lot out of life. Her sisters adore her, she's Daddy's little girl (and Mommy's!), she loves music and being outside- we can tell that she's happy and that she loves us back. The thought of that slowly leaving her just socks me in the stomach, if you know what I mean. Some of you do, all to well. I guess I just keep giving her as much love and joy as I can so that I can fulfill the assignment that God gave me of being her Mom. I suppose I'm a little too old to stomp my feet and pout about it, better just dig in my heels and try to enjoy the ride!

Sometimes I feel like my plane got re-routed to Saturn instead of even Holland!

Comfort

Today it looks gloomy and stormy outside. It's windy and the clouds have that "drawn with charcoal and then brushed down with a paper towel" look. So, I’m thinking it might actually rain today.

I LOVE rainy days! Maybe it's because I was born in April, but mostly I think it's because of the way it seems to wash everything and leave it fresh and clean smelling. I just love the way it smells right before it rains, while it's raining and after it's done. I also love that it is an excuse to stay inside, hibernating.

I'm wearing the closest thing I have to sweats, having banned actual sweats because I couldn't stop wearing them... in public. They're knit and they have a nice shape and they're comfortable. I'm wearing the shirt my sister sent to me from the college in their town that her husband is going to. I miss her SO much and she sent me this shirt- emotional comfort. The only reason I have anything on my feet was so I could walk Becca out to the bus and those would be the bright pink flip flops I tied scraps of pink and yellow fabric to at my favorite reunion last summer. So, basically I'm dressed as a housewife, not the competitive, "my highlights must be highlightier than yours," just the "I love my kids and I've had a rough week full of doctor appointments and running around and I just wanna stay home" kind of stay at home mom day.

So, what am I going to do today on my day of comfort? I'm going to sew. Wanna know why? There is something about the things I sew that bring a different kind of comfort. I love knowing that the child that will wear the big sized onesies I'm making will have a way to look like everyone else while still having a way to get the food into him the way that he needs it to be. When he sits in his wheelchair or rolls around on the floor, his shirt will stay tucked in. To his Mom, I know that's a big deal. I love knowing that the simple toys I make that are full of texture will bring joy to someone who doesn't always care that toys make noise because they all feel like plastic, but a book full of textured fabrics is fun to feel and colorful to look at. I love the coats and jackets that I make keep kids warm and dry- including their laps, because when you sit in a rain storm, your lap absorbs the most water!

I rarely sew for myself in the physical sense of sewing something for myself. I do sew for myself in the "pay it forward" sense that I'm making something that will make someone else happy. And when they are happy, so are the people around them and so on and so on. So, really I get my gratification when others get theirs from something I've made. I hope that's not too selfish, because I LOVE it SO much!

Pink Milk

Am I asking too much of this milk? A little half and half, a lot of whole milk- the bottle seems mostly full. Then I add a half a packet of Instant Breakfast, a few tablespoons of a constipation releiving substance and some spoonfuls of pink flavoring. I'm no scientist, but isn't there only so much suspension that can happen in a liquid?

Luckily it all fits because it does it's job and she REALLY likes it!

Medication Meditation

Somebody please tell me that the chemicals I am now inserting into my 6 year old's body are going to do her good! We have gone from the occasional teaspoon of Milk of Magnesia and fiber in her drink everyday to what is becoming a cupboard full of medication.

When Becca was born in 2000 we went home with a list of things to watch for, but nothing that needed immediate treatment. At 3 months she had a hearing aid, at a year old she had a second hearing aid and glasses. At 2 years old, we ditched the glasses and kept both hearing aids. Sometime during preschool we finally stopped using the second non-useful hearing aid. So, at around 4 years old, we were back where we had been at 3 months old as far as apparatuses, or apparati?, and that was a good thing. As far as medication up to that point, we had only tried things to manage the constant constipation. Starting with prune juice, Senekot, Milk of Magnesia and finally fiber.

Then came the spells. Becca started to have these episodes where she would lose her oxygen, in other words, turn blue. She kind of zones out, turns blue and then has a very hard time getting herself back to pink. She breathes, but very shallowly. When she comes back to us, she usually either throws up or dry heaves and is then very sleepy. Detective Diana on the case!

Could it be similar to sleep apnea? The ER Dr. after a visit concerning these episodes did write "Apneic Episodes" on her chart. So, we tried to get an appointment with a sleep clinic to do a sleep study and make sure her breathing wasn't stopping during sleep. After sleep clinics not calling us or our family doctor back, I called in my posse of Moms and got the job done at a sleep clinic not part of the Children's Hospital. It's on the books, we'll be staying overnight at the beginning of September.

Could it be reflux? We have suspected aspiration for a while now with her poor chewing and swallowing techniques. The first ER visit, I was sure she had aspirated and they checked with a chest x-ray that I later found out would not have been able to see food in her lungs that quickly. After waiting all summer, we finally talked to the GI doctor who said that it very well could be that food was coming back up her esophagus and blocking her airway and causing her to turn blue. Good, that's better than the last option I had, in my own mind, considered, but was reluctant to explore...

Could it be seizures? I did not even want to consider this scenario. However, as I went dutifully to the other appointments that we finally had crossed enough days of the calendar to attend, I couldn't push it out of my mind as easily as before. I didn't know a lot about seizures, having never experienced one myself or even seen one happening. I had friends who had, some, unfortunately, with lots of experience. I wrote 2 significant emails. One to parents of kids with CMV from all over this country and a couple of others and one to parents of kids of all kinds of disabilities all over Utah. Sure enough, the CMV parents offered several stories of their children's seizures starting at about Becca's age with extremely similar circumstances. My Utahkids friends were very supportive and then one of them saw Becca have an episode. She, being a veteran of helping seizure victims, thought it was a seizure, too. So, off we went to the Neurologist. We have one that's our favorite. Not only has he studied CMV for years, but he was there when Becca was born and taken to the Children's Hospital and has been our support and a wealth of CMV information ever since. After my description and lots of clarifying questions, he did indeed agree that these episodes are most likely seizures.

So, here I sit with a basket full of medication to squirt into my little girl. Miralax for more intense constipation therapy. Zantac for reflux. And now Trileptol for seizures. It's odd to think that if I hadn't started asking questions and making doctor appointments, she wouldn't have all these chemicals coursing through her body. But then, we'd have more painful bowel movements, possible heartburn and the scariest of all, more blue-lipped episodes. I suppose in a way, 6 and a half years of no intense medication was a good enough break. Now, I'll hitch myself up, whip out my medication syringe and put one foot in front of the other.