Journey Beyond Survival

One more day of finishing up the 48 hour test. It takes forever doesn't it? Trust me. You don't want to talk to me right now. I've spent two days scrounging up food, neglecting hygiene, and sleeping on a jack knife sofa covered in plastic. Plus, I'm pre-posting this anyway. If I know me, I will be nervous right now. At 9:00 AM I will troop away from the VEEG center. Chickadee will have a combination of Dental cleansing paste mixed in with paper mache glue and a bit of "conditioner" that the techs try to help things out with. It usually sticks up like a good Southern bouffant, but since we're going for double the hours we might get up to a beehive quality pouf. Hopefully on Monday, I'll feel like typing about the results. I'm not so sure from this end of the tunnel. Please pray for me. That we can handle the seizure meds if she's having seizures, and that the neurologist will listen to me and keep her off them if she's n...

I was driving along, minding my own business yesterday when it hit me.  A beautiful idea out of nowhere that makes so much sense!  Has that ever happened to you? It dovetails beautifully into where I'm going, what I want to do, and how I want to get there.  Why didn't this occur to me earlier? I started thinking about how Mr. Survival came up with what he wanted to do with his life to support his family and hopefully have fun.  I started thinking about how much I had to do with any of those choices. I could have had a lot more say.  But, I chose to trust.  I realized with that lucky wisdom of youth and inexperience that he would know better than I.  We talked out his ideas, and I was pretty honest about what I needed.  But, the decision was up to him. This time I've been motivated by fear.  Everything clenches from my teeth to my hands to my bottom and my toes when I think about running out of money.  That is silly.  We wo...

We raised $5597 at FirstGiving.com We raised $25 on Facebook with Paypal Ryan and Deb raised $1000 for a new website . And? That puts us over the top! Even when we factor in any fees that Paypal, Firstgiving, or Ryan incur due to credit card use fees, we are over. So. What does that mean? We are on our way! At Midwest Assistance Dogs, they are excited about training a dog for Chickadee. It's a unique situation that has never been done before, so I appreciate all of you being supportive and open minded about it. We are still discovering the ways that Chickadee can be benefited by her Service Dog. So, I'm working with the director. He is reviewing our life, and bouncing ideas off me as to what will work. What does that mean? I don't have a specific doggie, or date yet. It depends on what is realistic for the dog to learn, and for Chickadee/I to be able to help it execute. Basically it's gonna take time, research and experimentation. Usually? i...

I noticed it when we were going potty.  We use the big wheelchair ones at the back.  You know, because we have a wheelchair?  I was a bit glad when she got the pink chair.  I didn't have to worry about irate middle aged women harassing me about using handicapped utilities.  I love the automatic doors, but we can totally do old school backwards. Chickadee likes to have a conversation while we pee. I don't. But, one must accommodate when one has an audience.  Just as I finished up, she implored me. "You need to go potty too?" Yup.  So I started the long process of extracting her from her seat, chatting a little to keep her calm.  Like a lot of 3 year olds, she has a hard time holding it once she's decided it's time. "Here.  We're just going to unbuckle your belt...get your arms right...okay, hold onto mommy and you're out!" Chickadee usually panics at this point.  Gravity takes over. "Let's strip you down, don't wor...

First of all, to truly understand in context, I must explain to you in Gory detail. Yesterday was a very difficult day. Traveling is always hard. For both of us. But yesterday, the doctor's visit was horrifying. Not only was there an unusual amount of detail-mineral and vitamin absorption, bowel and swallowing habits, regressions, physical strengths, Momma's mental stamina, potty training-but there was also a problem. Chickadee needed me to hold her the entire afternoon and evening after her first day at the new preschool. I worried that she might be sick. But there was no fever. Just Mommaness. Then while I was on the treadmill Chickadee woke up yesterday and had a pretty bad diaper. Mr. Survival deserves a reward. Josie at YumYucky told me Tuesday about the Barfing Boat. And it's a good thing. We were at the Doctor's office. Chickadee was stripped down to her diaper, but was wearing my Christmas present I made her. This one: It caught all of it...

things we do on the potty loves the bus siblings adore her Today is a traveling day. Again. Unexpectedly, we got a call from the Developmental Pediatrician yesterday, saying we could have an appointment today. The DP is the fabulous lady who coordinates all of Chickadee's specialized care. It's her job to know that the Pulmonary recommendations do not interfere with the Neurological, or the Gastroenterologist, Primary Care, or Rett Specialist. Since we got the G-tube placed, we must be on some high priority list. Which is great, because it's time for her regular battery of tests to be run. Swallow study to see if she can still eat what she's eating by mouth, or gotten better or worse. EEG to see if she's having seizures, EKG to monitor for a heart thing that kinda goes with Rett Syndrome, and maybe (I hope I hope I hope not) a sleep study where they stuff her nose full of 6 monitors, attach EEG electrodes to her head, Put on chest and toe and fi...

*photo by pmarkham So, here I sit on the edge of the bathtub.  At 4:44 AM no less, just as I have been all week.  We've graduated to Chickadee using Netflix on my iPhone, and me grabbing my laptop to write a post.  It's the only time it's going to get done anyway.  She hates when I'm asking her in ever increasing moments, "Are you done?  Hit mommy's hand if you're done."  Half the time I swear she hits my hands or looks in my eyes as requested simply to get me to shut up.  Ten minutes later she needs a new diaper, but at least mommy's out of her face! It could be worse, yesterday she did it at 2:30 AM.  I've been an insomniac this week and hadn't gotten to sleep  until the depths of 11:00 PM  in spite of being in bed at 8:30 PM .  So, yesterday was rotten, because 4 o'clock seems to be an hour Chickadee loves dearly and woke early to see it too.   All this is to say that I feel guilty for missing my workout yesterday. ...

I've learned a lot about doctors. Chickadee's primary care doctor didn't believe me for 10 months that anything was wrong. She taught me that I just might be right.  Even after the expert has told me I'm wrong many times. The neurologist, our first specialist, taught me that it takes 3-6 months to be seen by a specialist.  And I don't even know if I'll get any answers. The pulmonary doctor taught me that dire predictions don't always come true. Chickadee outlasted her need for a g-tube by 18 months. The developmental pediatrician taught me the importance of primary care.  Even though the former may prescribe, it is the latter that must call it in.  She also taught me that though things may not make sense, I must abide by the system or get run over by it. Gastroenterology taught us that the medicine we need may not be what we want or expect. Today I'm trying to use all of this knowledge. Really really hard. Chickadee and I went to this stu...

If the idea of my Chickadee's feeding tube makes your stomach turn, you don't want to keep reading. Feel free to skip out, and come back another day! To the far left is a picture of the tubes that I use for Chickadee now. The larger ends go into a large syringe. Which is the next picture. It looks like this: And also this: We're still working out our nerves.  But, it's working well.  Her surgical site is healing, and has passed four doctor's health tests.  She doesn't flinch when I pick her up anymore, and hasn't needed any pain medicine for over a week. I honestly never should have taken her on that camping trip last weekend.  I feel badly about it.  We came home early.  She tolerated it, but she would have been much more comfortable at home.   What makes it all worth it, is the first thing that made her giggle after surgery.  It was our second day.  They showed me how to vent her through the tube.  It's like bu...

Today I'm going to Big City.  Three and a half hours away.  We do it in a day, all the time. The plan is that I will do C25K week two day three.  Before I go. Hopefully, I will take very very good care of me.  I've packed healthy food for me, and six bottles of her drink that costs an arm and a leg.  We'll head out with the other kids as they catch the bus at 7:05 AM.  After waving, we'll head on our way. Then we will spend the entire  day taking care of her.  We'll talk to them about how her eating skills are deteriorating.  How she can't keep down but 75% of her drinks and won't eat solid foods hardly at all anymore.  We'll weigh her in.  We'll deal with the panic of the doctors.  Hopefully she won't be hospitalized.  It's probably a 15-20% chance that she will.  They will tell me something that will inevitably make me cry on the drive home. It will suck. But then, I will also get to tell them.  I w...

So, since Friday I've been thinking. I wrote that post , as a sort of therapy process.  I obviously do that a lot.  I wasn't thinking about anybody else, or even how the reader would interpret that. I don't usually do that. We are going through one of many transitions in our situation.  We've started going to soccer practice/games recently.  I get a LOT of crusty looks surrounding Chickadee.  More than anywhere else.  It puzzles me. It hurts my feelings. But, not as much as it would have done.  The moms at the library will get used to us.  Some of them will be my friends.  I don't know which ones, because more than ever I'm realizing I can't predict who will react in what kind of way.  Just as I never know the friendship chemistry will click between myself and any other person. I have always had blocks to being friends with everyone.  The last time I was in THE popular group was before I moved in second grade.  S...

Chickadee and I went to the library yesterday.  It's our first time just the two of us.  Beansprout was missed greatly, from his explosive storytime personality to his holding open of doors.  That boy holds doors open better for Chickadee's wheelchair than any other human.  But the kind stranger was good enough, even if it was a bit awkward.  Like a date. We had a lot of fun.  Only one family was there from our old tribe.  It was fun to catch up, but the other 12 parents were unsure of us.  Chickadee has transitioned to conversational punctuation. In other words, she's a bit of a moderated yeller. She immitates the tone of the speaker. It's been celebrated around the home.  Cause it's at least a change from all those raspberries, and she's interacting socially.  But public storytime is a different monster.  The little people in diapers waddled over and stood between her and the book.  The older ones simply stared, equal...

I am HERE . I had hoped to get farther, but I know this place like the back of my hand. Okay, not that specific site, but it gives you the flavor of the town. We stopped here once upon a time when my entire family decided to conspire against me and vomit. Hubbend. Chickadee. miss THANG. Beansprout. Somehow I survived. A stop with a McDonalds, grocery store, and nice hotels is memorable at that point. Did you know that Handicapped Accessible rooms have parking spaces right in front of them? With exterior doors? Ahhh. Perfect for the war-torn woman traveling with three kids. I didn't realize that Hubbend was actually leaving me. Not until he called me from inside the airplane to tell me he'd made it onboard. We'd stopped a THIRD time for miss THANG to go potty at an oasis. Chickadee was not happy. Beansprout thought peeing in a cup was novel, so he had done it again unnecessarily. When Hubbend said, "I'll see you again in time for the reunion...

Did I tell you it's a crazy week? Chickadee started preschool I am writing during Chickadee's school We're working on a mortgage Hubbend is going to Deutschland I am going to Utah I am pulling my kids out of school so we can go We're going to Big City 3 1/2 hours away TODAY Chickadee is getting a g-tube and this is her consult. I'm just going to do my best and know that I'm good enough right now . After all, I've got plenty of friends to support me . Friends that make me laugh , and let me know it's okay to cry. (that really is a compliment) I hope you all are doing great, and bear with me during this crazy week. I am determined though to get back in the groove and lose weight. Even if I don't have a working scale (yet). I am drawing strength from you, and lending you my own support even if I'm not able to get you a typed out one. We can do this. Let's DO THIS THING!! *photo by Globetroppers*

Last Saturday Chickadee decided I was ready.  At 2:30 AM, she gave me notice.  I had woken to her singing and walked blearily to her bedside. She insisted she was NOT tired.  No, she did not want her diaper changed.  Even though she kept hitting her diaper over and over again.  Finally, I checked her diaper in spite of her insistence. "It's still dry!" I said surprised.  "DUH." said nonverbal Chickadee as plain as day.  Then she commenced hitting her diaper again. I gazed at her dumbfounded.  Finally, "Do you want to use the potty?" I asked hesitantly.  We've talked of it . . . but I just wasn't ready to commit yet.  "YES" she screamed at me with her intense eyes burning through my retinas, brain and skull. I put her on the potty.  She peed.  I said, "WOO-HOO!!!"  She looked smug, a bit non-plussed. I've never toilet trained a child like this.  She pooped on the potty later that day.  Usually it takes ...

Chickadee told me something last night.  She wanted her favorite song.  She wanted me to sing it.  She wanted it again and again.  She just about made me cry.  She patted my face and seemed to be telling me that this was her message to me: Woke up this morning Smiled at the rising sun Three little birds . . . on my doorstep Singing a good song. Melody Pure and True Singing This is my message to you-oo-ooh. Singing don't Worry about a thing 'Cause evry little thing 'Sgonna be All Right Amazon.com Widgets I think my sweet Chickadee might be right.

Today I'm going to the doctor's for Chickadee.  Three and a half hours away.  I haven't made up her bottles and miss THANG just drove 12 hours yesterday. I've missed my exercise window.  Again. I'm not excited. I also bombed out on Chickadee's birthday.  I was going to have her just celebrate it today when Hubbend and miss THANG were back.  But I neglected to tell the people at church that.  She looked so disappointed, betrayed even. Plus she's worse. She can't roll over very good.  And she's having a hard time sitting up even when propped. I'm really really really sad. *photo by John and Keturah*

Last Monday I got some overwhelming news about Chickadee. She needs a g-tube , and we need to get everything arranged. I sighed a heavy sigh and told the nurse practitioner I would work on Hubbend to get him to come around. Turned out he wasn't as far off that idea as I'd thought. He agreed to it with a fifteen minute conversation on the way home. I told myself it's normal. Our normal anyway. It makes sense, we understand it, it is time. We've had a year to get ourselves ready, since the word g-tube first came up really. But after I hung up the speaker phone, my irrational side could not accept what my rational mind had skipped over. That this is our normal. This is expected, it is in our life manual. My mind was screaming. My littlest sister already has a g-tube. I'm comfortable with idea, which is a big deal. I was comfortable with the idea of a g-tube last year actually, I just wasn't convinced of the need for it. Only one of her six spec...

TMI? Soooo sorry. I also just found out that Chickadee and I are to spend the day driving to hades on Monday. Someone neglected to place the appointment on the fridge calendar. Apparently I am not so digital after all. Oops. I also found out I am to deprive her of food for six hours. Hmmmm. All these things together add up to me savoring these pictures: mmm...must find way to... resist *Photo credit 1*   *Photo credit 2*

I promise I'll be back tomorrow. Fresh as a daisy, and so relaxed I'll be ready to write flowers into bloom. I hope you all had a great Fourth of July. I miss you, I'm sure. love, JBS 7/2/10