CT Trip, day 1: Long day of travel

If you’re on FB, you saw little snippets through the day. Braska did SO well. She just seemed mostly unfazed by the chaos, LONG waits due to the delayed flight, and the supremely stressful (for Mommy) drive out of NYC.  She didn’t eat anything from 10 til almost 7pm, and she didn’t complain. She drank her milk and went on being sweet.  She LOVED flying, no doubt.

The plan had been to give a bit more detail about the day, but I’m tired, so it’ll wait.

I’m dealing with a little culture shock in our short time here on the east coast.  I’m hoping some sleep and acceptance of a different perspective of those who are used to life away from the middle of the country will bring a more peaceful tomorrow.

Tonight I’m most thankful that we had a good flight and she did well with all the transitions. After a little netflix and yogurt by request, she chose her bed to be in the closet. So I asked the hotel for a couple comforters, and made it up for her. She jumped in her excited way and said, “I love this place!” and went to sleep in just a few minutes.

Countdown: 6 days

We leave on Sunday. M and Kinlee will drop us off at the airport and Braska and I will try to navigate ourselves and baggage through to NYC and then out of there to CT via car.  Right now, I’m finding myself scared. Nervous. Having quite a bit of anxiety about it all.  So I’m refocusing on the blessing side….and our biggest blessings have been people!

A BIG “thank you!” is due to so many of you. And I hope I’ve told you repeatedly…. 

•We have received our plane tickets and rental car via a dear friend from years back who has never even met Braska but felt led to reach out in this way.  THANK YOU!

•I have been working more hours and my friends have been clocking LOTS of child care time to let me earn a little more to help with expenses.  THANK YOU!

•My photography business has been busier (Larae Photography, LLC) and that also helps our “trip fund” immensely!  To all who have booked so far… THANK YOU!  (There are fall slots available, so if you’re considering family photos, birthday photos, or Christmas cards, I’d love to get you on the schedule for September or October!)

•Lovely friends who I only know via blogs/Facebook/online forums have shared with us both in sweet encouragement and in their financial generosity. Dear friends that we don’t see NEARLY as often as we’d like have also shared so generously. It’s been amazing!  THANK YOU!

•We’ve had people mention that they were gathering gift cards for our food expenses for the trip. There have been offers of helping with meals while we’re gone and M and Kinlee are here. There have been SO many praying (and I need that so much right now!)  For ALL of that… THANK YOU!

I’m surprised at how I’ve begun to get emotional about the trip. I’m surprised that I’m so anxious.  And yet, I’m not.  I have a great fear of failure… tendencies of perfectionism that leave me frozen with inability to act when I know I can’t do it just the way I want to do it.  So I either do things really well or I don’t do them at all… and it’s a problem in much of my life. And with Braska, I can’t MAKE her do anything. I can’t reason with her. I can’t teach her the way I feel like I should be able to.  So I’m scared that we’re going to go through all this and I won’t be able to carry it out.  That it won’t bring success in the coming months. And that’s terrifying to me.

So thank you for all your encouragement. With all the horrible things happening in the world and so many dealing with more treacherous situations, it seems petty to be worried about something like this. And yet, it’s our life. Every day. Every meal.  My daughter can’t chew. She can’t deal with a meal on her own. And I want her to have that independence if it’s at all possible.

Prep for CT trip: Hope and Fear

I just keep telling myself I’ll sit down and kind of document how we got here, details of the hopes I have, trip plans, and all of that. But quite honestly, that is not likely to happen in any smooth narrative manner soon. So the oft-used bullet list will have to do.  (If you want to see back story on feeding, I’ve added the posts from Braska’s previous blog related to feeding, so scroll down to the label cloud and click on “feeding” if you’re curious.

•The dates for the trip: We (Braska and I) fly out on Sunday Aug 17 and return to StL on Thursday afternoon Aug 21.  We will fly into LaGuardia and drive to Norwalk, CT. That should be fun. NYC.

•Braska will have an evaluation with Lori Overland on 8/18, then treatments the next two days. The goal is to develop a plan specifically for Braska’s skills and needs and then be ready to bring it back to our therapists here. We’ll be getting video of all the treatment time to bring back with us. (Note to self…need to borrow a small digital video camera.)

•This is not an intensive treatment situation. Some facilities do a day program, many days in a row with treatment most of the day. This is not that. This is creating a plan for success that we and B’s therapists can continue.  We will also do any needed follow-up with a colleague of Lori’s in Indianapolis. I plan to do some occasional checking in there to make sure we stay right on track and do not mess up the process at all.

•Crunching the numbers:  This is not something that is covered by insurance, so it’s going to be paid for with actual dollars.  Total cost of all elements would be a month’s income for us.  It is not as expensive as the day program/intensives that are out there, but as mentioned, apples to oranges, those two.  Straight up--The therapy itself is $1150 for the 3 days.  We are SO SO blessed to have had a wonderful friend purchase our tickets AND rental car with airline miles and points.  This is still just amazing to me, that the huge chunk that is that expense is now covered! We are very humbled and beyond appreciative for this generosity!

•What’s left? Clearly, the cost of the therapy is being dealt with. We are looking to rearrange and make it happen. It will happen. But as we choose to live without debt, and the therapy clinic doesn’t take credit cards, this is a cash transaction. We are still arranging for the hotel stay which we expect to be about $580-600, possibly a little more, and trying to budget for the food we’ll need while we’re there, as well.  If we can make it work to get a hotel with a kitchenette at least, we will plan to just shop when we’re there and make food at the hotel to save, of course.

•How to help….  Please pray. Pray that we have safety and that the whole trip goes very smoothly. That’s primary.  Pray for our preparations and my sanity as I try to wrap my head around the whole thing. (See the next bullet for more on that.) For those who have asked specifically how you can help, offsetting hotel costs (anyone got points on a credit card or hotel rewards card??), or food costs is the main thing now. Obviously, the therapy costs a lot, but it’s a priority for us to make this happen for our girl. If you feel like you want to help, it will be most appreciated!  But this is NOT an attempt to garner that kind of support unless you have had that leading outside of our mentioning it.  Braska does have a special needs trust started that can accept any donations that are sent, being used only for her specific care. Details are available if you message or email me… braskasmom at gmaildot com.

•Hope & Fear: I’m struggling to consider all the parts of this process.  I’m overwhelmed by the to-do list as well as so amazed at the wonderful response we had at simply sharing with people that the trip was happening.  I’m excited to go, and I’m scared to go.  I’m afraid I’ll be faced with all that I should have been doing for the past few years. I’m worried about the pressure of bringing back this plan—having spent all this money to go—and not being able to carry it out for her. Dropping the ball. I have hope for the first time in a LONG time that Braska might actually some day learn to chew. That she might eat a meal of more than blended soup and yogurt, that she might feed herself, and that she might chew a french fry, like kids should on special playdate trips to McD’s.  I’m almost afraid to hope though. Wow, I’m apparently more afraid than I even thought, judging from my welling eyes as I type.  I want her to have this chance. And I want her to succeed!   Yet I admit to doubts that it’s even possible.  Yet ALL things are possible when God is involved, and I have no doubt that the crazy way this has all played out is no accident, no coincidence. He’s all about my girl, as he created her perfectly. So I’m going to do my best to focus on the hope, not on the fear.

Thanks for caring enough to read that whole long random mess! Here’s to success!

Next chapter in the feeding therapy journey

I will delve into this much more, but for now, the bottom line is this.

Braska and I will be heading to Norwalk, CT in just under 5 weeks to have an evaluation and treatment visits with the best of the best for this kind of issue. I’ll talk more later about how we got here and why we’re going there.

For now, here’s the video that I made by the request of the therapist to get an idea of where she is now. It’s a small peek into how mealtimes go… on a good day.

Independence Day 2014

We had a very lovely day yesterday at the home of a dear GENEROUS friend.  We’ve celebrated many holidays and special events at her home, and we often joke that she lives in our vacation home. But we do not take for granted how blessed we are to have friends like Miss C!

For about 6 years, we’ve been taking pictures of the girls by the waterfall next to the pool.  Here are this year’s results.

This was 7-04-2011 at the same place. They would have been 2 and 4.


After pictures, it was time to swim!  Hello Kitty was the theme of the day apparently.


Always the popular one, Cousin McKayla obliged both girls with some cuddle time.

 

Braska LOVED some sparkler time… Kinlee, not so much.

We finished up the day with Daddy and B enjoying the evening at home with early bed, and Kinlee and Mommy went to watch the StC fireworks from a pleasant, low-traffic distance. 

Thankfully, the girls slept well in spite of the neighborhood of crazy loud home displays.  The parents didn’t fare so well….  Overall, a really nice day!

Braska's Favorite Sister

Last night, I hung out for a while in bed with Braska as we were waiting for Daddy and Kinlee to be done with the bedtime routine.  We shared the pillow and were being silly and giggled alot.  I started asking her questions as we chatted.

"What's your favorite color?"
"Blue"
"What's your favorite..... shape?"
She laughed, "Shape??" Pause. "Square!"
"Ok, what's your favorite animal?"
"Giraffe!!"
"Nice, he's so tall, isn't he!"
"Yes, he's REALLY tall!"
"What's your favorite...hmm... sister?"
"Sister, um.... Della!"
"You like Della better than your sister?"
Laughing again, "YES!"

So there you go. A baby cousin makes a better sister than a little sister.
It could change tomorrow. Stay tuned.

Kinlee shares her feelings

Today Braska had physical therapy relating to her urological issues.  Kinlee went along because I didn't plan well enough to have coverage for her.  She took a book and generally is fine in those situations.  She's kind of used to it.

While we were there, all of us in a room with the therapist, Kinlee wanted to answer questions and interject as part of the conversation. I asked her politely to please read her book and let me deal with Braska for right now.  She started to argue, and I asked her again, a bit more intensely, to read her book. She asked to sit on my lap, and I said this wasn't a good time, that she needed to stay in her chair. She got very upset and pulled a bit of an attitude with me which brought a quiet but firm reprimand that made her cry a little to herself.  I don't like that, but yet she's struggling with the fact that not everything is about her, so we're working through these moments.  She recovered well, and when Braska and the therapist were out of the room for a moment, I explained to her again that this is a time when I need to be paying attention to what's happening with Braska and I need her to help me by doing what we've brought to occupy her quietly.

The rest of the visit was better, and Kinlee cooperated with the plan well.  I tried to include her when I could--watching the biofeedback screen to see the smiley face frown or smile when Braska tightened or relaxed her muscles, etc--and she didn't interrupt again.  She mentioned at one point before we left that she wanted me to take her to the bathroom.  I asked if she needed to go or if she could wait til she got home.  She said, "I don't need to go potty.  I just want you to take me into the bathroom."  I wasn't clear what that meant, and Braska was heading for the door, so we decided to head home and deal with whatever it was there.

When we got home a few minutes later, Kinlee said, "Remember, Mom, we're going to go into the bathroom."  I went along with it, and once inside the house, she prompted me again.  We went in, and I started to take Braska's padded ring off the toilet assuming she needed to use the bathroom, but Kinlee said, "I don't need to go, Mom. I just need to talk to you."  She went to both doors in the bathroom and closed them both all the way.  She came back and reached up, so I set her on the bathroom counter.

She began with, "I wanted to tell you that I felt very left out when we were at the therapy.  When we go to Braska's therapy appointments, I feel sad that I can't do the things, too.  Because you just pay attention to Braska there."  She was speaking very calmly, sincerely, but not getting teary like she often does.  She seemed so grown up.  "I try to talk to them, too, so I don't feel embarrassed that I'm not getting therapy with Braska.  And then when you told me to stay in my seat instead of sitting on your lap, I got embarrassed again."

I talked to her very calmly, telling her it was so nice that she was talking to me with calm words and explaining how she felt.  That I was proud of her for doing that.  We talked about how sometimes it is just necessary for me to be focused on Braska's needs.  And she said she understood that Braska needs more help with things sometimes, so it's ok.  I reminded her that there are lots of times when she and I do things together and Braska is not involved.  She said she understood.

I gave her a big hug and said how proud I was again, that I liked her choice of talking to me like this instead of throwing a fit or being disrespectful with her tone and attitude--which is not uncommon and brings consequences each time.  She smiled real big and hugged me a couple more times.  "When Daddy gets home, we can tell him that I did a good thing and told you about my feelings and didn't whine about it, right?  I think he'll be so proud of me, too."  Of course, I assured her that was true.

Oh how I hope we can continue to utilize chats in the bathroom or wherever she chooses, to diffuse her strong emotions and reassure her of her valued place.  It's odd to balance in my mind that a child so advanced in many ways, so intelligent beyond her years, is so aware of her feelings and can recognize insecurity.  We are so proud of her for so many things, and she knows that, but everyone needs a little reassurance and reminder of their value.

She's 5 years old.  Going on 15 some days. Lord, continue to equip me with what I need to be able to pass on to these precious girls.