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.

The word "retard"

I have thought a lot about this. I remember using that word, but as I got older it didn't come to mind without that tinge of "I shouldn't use that word." I have had elderly relatives use that word because, to them, it is a blanket term for anybody dealing with delays or physical shortcomings. It really used to bother me A LOT until I realized that it is just a misunderstood word. It really does mean slow which could translate into delays or physical impairments. It did, at least in my life, have a separate incarnation as a derogatory word used to make fun of anybody you didn't like and it was often accompanied by a curled up fist hitting the chest in a way that I see my Becca doing now with her snarled muscles. It breaks my heart that I EVER did that. How could I have thought that was okay? Well, because I didn't know then what I know now. I didn't know a lot of things then that I understand now. I have to give people the benefit of the doubt even if they are much older than me... they just don't know what I know. How could they? They haven't had half of the experiences I have had dealing with disabilities, doctors, the whole shebang. How could they possibly understand? Well, hopefully after they've met me, or grown up with me as their parent or been my true friend, they'll never look at ignorant words like that the same and they'll never ever use them again against somebody. It's one thing to look back and regret things we said or did in innocence and quite another to learn from our mistakes and help others along the way.

I remember having this kind and yes, sometimes pitying, feeling towards the special needs kids in my schools, but I never did anything about it. I never pointed or made fun, but I also never went and sat by them and tried to make a friend. The one I remember talking to once in a while was Julie. She rode my bus. She was big, like a high schooler, but rode the bus with us in Elementary. She was always already on the bus when we got on and always sat in the seat right behind the driver. She would bounce against the back of the seat rhythmically and it would get faster and faster when she was excited. She carried around one of those little black flat tape recorders and it had a Winnie the Pooh tape in it that she could rewind and play over and over. :) She would talk to the bus driver the whole time we were driving and the bus driver would always talk to her and smile at her in the mirror, so we knew she was nice. I remember saying hi and she'd stop bouncing to turn and look at us, but sometimes she'd just look at us in that shy "I don't know you" way. I'll bet her Mom worried about what we might say to her. She probably had a hard time putting her on the bus for the first time, the second time and maybe even the twenty seventh time. She probably had a spare Winnie the Pooh tape at home, most likely several, for when the constant rewinding and playing finally snapped the tape ribbon. I get it now. I didn't then. And that's okay.

A little about Becca

I suppose those who may be reading, know Becca pretty well. I just sort of "introduced" her to a friend and it turned out well. I'm posting it here to help remind myself lest I should find myself mired in the day to day and forget how very, very lucky we are to have her in our family!

Becca has quite a bit of brain damage brought to us courtesy of a nasty virus called Cytomegalovirus. We contracted it while I was pregnant and against all foreseeable odds, ended up with quite a few affects from it. Becca has Cerebral palsy that has her arms and legs tight and her torso and neck floppy. She doesn't sit, stand, walk, crawl or anything without lots of support and someone else doing a lot of the work. She is Deafblind which for us means that she has severe loss in her right ear (we don't even aid that one anymore) and a mild to moderate loss in her left (that we do aid) and we don't know where her vision is because she doesn't look right at anything for long enough to tell and she can't tell us herself. She is nonverbal and still cries when she's upset or to get attention.

Becca's personality is very sweet. She loves to be loved, cuddled, talked to, sung to, read to, interacted with. We can get her giggling uncontrollably by tickling her ribs or blowing on her face. We see things in her eyes that tell us there is more in there than we may ever get to know, given her physical limitations, but it is there nonetheless! She remembers people and recognizes her helpers and teachers and gives them smiles and happy body language. So, even though on paper all that stuff in the first paragraph are the things that some people see first, she really gets to shine once people really get to know the real her. We had an experience with the playgroup they do for 2 year olds until they transition to preschool at 3 where I heard through the grapevine that they weren't sure if it was right for her, to put it nicely. I asked that we get to go once and I would stay with her (Me and the baby I was expecting! :) ) and see what happened. After they met her, they were more than okay with her coming and got such a thrill when they were able to get her to smile, etc.

Becca makes friends wherever she goes and they all love to help take care of her. Our aide this year had to start a list and let 2 at a time be her helpers for the day because everyone wanted to help all the time! You just have to keep on loving them and doing what you can and when you add preschool teachers and school teachers and aides and everyone that comes along with them to your list of helpers, just think of them as taking some of the therapy onto themselves and you get to be more of the caregiver and snuggler and they get to do more of the hard work. You will reinforce what they do, but it's not totally up to you anymore.

That being said, there will still be a lot of things you have to fight for or stand up for, but our little angels are worth it!

Logan

We are still looking for a job and we're willing to go great lengths to try to find one. How great of lengths? How about a two hour drive and two night stay? :) We didn't decide until Monday that we were going and Tuesday we were off!

We really, really enjoyed hanging out with all of our Logan cousins! :) Emily and Gracie had a ball playing with Karina and Jake and Cita and Allie! Becca loved all the loves she got! Could Bella be any cuter?! It was fun for Geoff and I to have adult friends to talk to and hang out with, too. We miss that-- A LOT!!

We stayed at Chez Lichfield and the accommodations were mighty nice! :) Heather and Adam were very good hosts and it was nice to have a place to crash that had a separate room for the kids and didn't cost much more than the price of a few dishes washed! ;) We had so much fun!! I love the stadium seating couches! I am wondering if I can get away with that somewhere! :) Our little bed bug Gracie slept with us the second night since every time we got near her bed in the other room she screamed so loud, I was sure she would wake up the neighbors, hard of hearing or not! So, we put her between us on the mattress in the living room and I thought we all went to sleep. In the middle of the night, I wake up and... no Gracie! "Geoff! Geoff! Where's Gracie?!" We look over the top of the bed and there she is, asleep on the floor, no blankie, just got out of bed, played with the luggage tag for a while and then crashed right there on the floor! Weirdo. :)

The job fair that we went up for, wasn't all that fruitful, but it does only take one great job offer to have a job! :) We're still hoping to have some results from it in some form or another. Geoff talked Josh into going with him and they had fun collecting the strange stuff people give away to get you to come to their booth. We're still not sure who they pick in their company to go sit in a booth and say, "I dunno, maybe you should check our website." Geoff did give out a few resumes and has a little pile of websites to check out, so you never know! And meantime we had a lot of fun!

Our prayers are with Stephen and Stacey and their little family. We hope you feel better soon and we know that there are lots of angels hanging out at your house! Thanks to Josh and Ingrid for letting us party at your house! Emily and Karina are the dress up divas! I can't believe we got out of there without any pictures of them! Next time, we're bringing the video camera!! ;) Ingridcita, you are one amazing, beautiful, talented girl! Brian, Kara and Kaylynn, I'm sorry our trip landed on your busy "piano lessons in Salt Lake" day! I'm glad we got to chat with Kara and her baby that's coming in the best month there is!! ;) I would say that if you had your baby on the 7th, would you name him after me, but I suppose a boy named Diana is a little strange! :) A big, huge THANK YOU to Adam and Heather for letting us sleep in your extra beds and eat your food and best of all, play your Sims!! Your kind deeds will not be soon forgotten! Especially the Sims because you know, past food and sleep, it's one of my favorite things to do! ;) Thanks to all for a trip that was T, double E, double R, double I, double F, double I, double C-C-C!! :) :)

A Lesson in Faith

I received from a friend:
Mother of A "Special" Child

When I was young, I'd often say, I'd like to be a mom someday
While playing with my baby doll, I thought that jobs not hard at all
I'd have a baby, maybe two, a girl in pink...a boy in blue
Well I grew up and sure enough,
The baby that was sent to me, was born with disabilities
At first I'm frightened through and through, there's much to learn to care for you
This wasn't in my plans at all, when I was young and played with dolls
Your mind and body were so weak, you might not ever walk or speak
So much special care required, I'm often scared and often tired
As months and years go slowly by, I smile a lot but sometimes cry
To watch you grow and not complain, though you endure your share of pain
Oh, how I'd hold you and I'd pray, that you'd be healed and whole someday
But I knew that was not to be, not physically or mentally
And so I taught you best I could, your progress wasn't very good
But then one day I realized, a I gazed into your loving eyes
That I had learned so much from you, determination...courage too
A love so unconditional, it floods my soul and always will
I'm proud to say I gave you birth, for you're an angel here on earth.

My response:
It's kind of funny because I get a lot of comments like, "I don't know how you do it, I could never do all that." To be honest, I have no idea how I do it either, I just know I have to and that Heavenly Father helps me so much along the way that I don't feel overwhelmed with it most of the time. I have a totally different paradigm and way to look at things than just about everybody else I know, though. Living with disabilities, etc. every day is so different from a lot of people's lives, but SO my life. Does that make sense? I know I don't make sense to a lot of people, I didn't think when I was playing with my dolls or babysitting or sitting in Child Development class that it would be this way. It's weird to even try to picture "the other" way because that will never be my life. I have a hard time even understanding a family with 4 children 2 years apart because I couldn't possibly do that. Let's say I was already expecting so that the new baby would arrive when Gracie was just past 2 years old. That would mean 3 kids in diapers (again) and 2 that don't walk, plus 2 that do- in different directions! :) I have to remember that families that do that, usually have an oldest who is responsible and tall enough to hold the hand of a younger sibling in a parking lot, one or two who obey and understand punishment enough not to have a meltdown in the grocery store over a treat. I really don't feel like a Mom with 6 years of experience. I have 6 years of experience with babies, but I'm only qualified with 3 years of experience in other things that so far I've only done once, such as potty training and punishing, etc.

I love my life- so much! I don't always understand my positive outlook except to say that Heavenly Father blesses me abundantly every day and that balances out the challenges that come along with this territory I am navigating. I will probably never hear Becca say, "Mama, I love you!" but I know that she does and I know she knows that I love her and that's what I have to go on until the millennium. Someone also once told me that they didn't understand why I seem to have so much faith. I don't know how to live any other way. Becca proves to me every day that the spirit inside her body needs to be here so badly that even though it has to live in a body that doesn't work properly, she is still able to find joy in her life. How can I, with all of my brain capacity, etc. not have faith when I am witness to Spiritual happenings every single day?

Wow! Didn't know I had all that in me! :)

The Genesis of Utahkids

So, do you really want to know how the Utahkids list got started? Val is spot on when she says it is inspired.

The setting is this, an Aggie Village student family housing apartment in Logan, UT. A family lives there with their brand new baby daughter, Rebecca. Rebecca has many difficulties, but isn't now in th hospital and now her parents are meeting lots and lots of Early Intervention workers and trying to squeeze out room in their tiny apartment to help Rebecca to be able to receive services. As the mother, Diana, meets all of these people and starts to learn how to best care for her angel Rebecca, she feels hopeful and looks forward to learning more about her daughter as well as connecting with other parents of special kids not unlike hers. Word traveled fast as the therapists learned that Diana was not only doing the therapies they recommended for her daughter ;), but that she wanted to meet other parents.

Meanwhile, there was a group in Salt Lake called the ICC Inter-agency Coordinating Council who met with representatives from E.I., Pre-school, Babywatch, medical fields, etc. They wanted to make transitions smoother and help inform parents of their desire to help them without overwhelming them with too many things all at once. So, the idea came to them to include parents in their planning processes. They wanted to have a group of parents as members of their council to help them direct their goals and services and give input on what those services mean to a family. So, they talked to their Early Intervention programs, etc. asking for recommendations of parents that would be willing to meet with their committee.

Somehow, some way, Diana was asked to be part of this committee. Well, it just so happened that Diana's husband, Geoff, was just about to graduate with his Bachelor's degree and they were planning to move to Tooele. This made it possible for Diana to accept the invitation to be part of the committee and be able to drive to Salt Lake from Tooele instead of from Logan to attend meetings. They moved into Geoff's aunt's house and although they went a year and a half without a job at first, they started their E.I. services in Tooele and Diana was all set to attend the meetings. One day, she was standing in the kitchen of their rented-from-family home when Diana got a call from Janet who was not only already part of the committee, but also coordinating parents to come to the meetings. It was there in the kitchen that Diana listened to Janet's desire to find a way for parents all over the state to be able to connect and meet each other. Maybe we could set up meetings in the Health Department building for them to come and mingle and meet. That's a great idea, Diana thought, but some of those kids are going to have a really hard time traveling. And besides that, some parents won't be able to bring the kids that are confined to their homes or even hospitals sometimes. That's when the inspiration came, that the Internet offered a way for any parent, anywhere in Utah with even periodic access to a computer could connect, talk and include people from all over. Diana, at the time, wasn't even sure how that would happen, but Geoff did. He knew how to set up the group under Yahoo and how to invite the first few people.

It was really slow at first. Here and there people wrote in and Diana reported to the council that almost 10 people were signed up, then the next month we were past 20. On and on it went until there were not only people signing up and watching the group, but people writing in to the group and connecting and building friendships and supporting each other.

I could never have known where it would go from there. I couldn't have pictured all of the faces I have met since then that have changed my life. I am so grateful for Janet and that committee that helped find us few parents and from there, meeting more and more parents. I went to a retreat in Park City with other parents and groups of people from the Early Intervention groups in 5 or 6 states when Emily was 2 weeks old. :) I have loved being involved and as my kids grow and get more rambunctious and it's harder for me to attend meetings, I am so glad to have already forged that connection. How many of us have come here in the middle of the night and then had many warm responses the very next day?

So there you have it! I was part of a team of people who put it together, really. You all have made it what it is today.

Lots of love!
Diana