The Good, The Bad, and The Unknown

 Last week I got a call from the school nurse telling me that Brynne's teacher had let her know that Brynne was having a hard time seeing the board from 5 feet away, with her glasses on.  She suggested I get her vision tested again.  Her last exam was in February.  I was choked up during that exam as Brynne sat on my lap and struggled to read even the largest of letters.  When the doctor gave me her prescription it surprised me.  I was sure she needed something so much stronger than that, but relieved that things weren't as bad as I had anticipated they would be.  So when the nurse called I had a pit in my stomach knowing that my first assessment had probably been more accurate.

Two days later I was at lunch with friends telling them about our big upcoming weekend with Brynne's dance recital and baptism.  When they asked me about how she was doing health wise, I could barely get through the vision issue without breaking down.  I'd been back and forth on the phone with our genetic counselor and the nurse a  few times and those phone calls for some reason just always bring the reality of her condition into focus for me and it can be a bit overwhelming.  It was going to be a couple of months before we would be able to meet with a doctor and get any resolution.  Her specialist had just moved to San Diego and we will need to go through the process of being referred out to someone new.  Unfortunately we don't think there is anyone in the area that specializes in what we need.

My sweet friends husbands are eye doctors and one of them called her husband from lunch and scheduled an appointment for him to take a look at things just as a favor between friends so that we could try to get her seeing better more quickly since she is still in school.  The appointment was this morning.  All of the staff were amazing with Brynne and she responded better to them than she has with ANY of the doctors she has seen for her eyes yet, and believe me there have been more than a few! They were so thorough and did test after test today.  We were there for just about 3 and a half hours and saw  a handful of doctors.  My heart was so full of gratitude as I thought about how blessed I am to have such amazing friends who have always so willingly offered their skills and expertise to care for Brynne.  I have some pretty incredible friends.

Here's what I learned from the exams today.  Brynne's prescription from Februaty was pretty dang close to the same, but I did go ahead and order her a new set of the stronger lenses for her glasses.  The reason she still can't see isn't due to the lenses, she actually has something in the back of her eye obstructing her vision.  There is nothing that can be done about this. She just isn't going to be able to see well even with glasses. Ever.  I also learned that one of Brynnes eyes that tends to wander a bit is hardly seeing anything.  She needs to wear a patch, like a pirate, for several hours a day to try to strengthen the weak eye or she will loose the vision in it completely.  The doctor told us that as it is right now even with her classes she could never pass a drivers exam. I know that as with all things related to Mito diseases, as time goes on it can only get worse.

How this news will effect her whole life has been  bouncing around in my head all day.  The one bit of good info I got was that he thinks she might be able to do another surgery to really open her lids, that are back to looking just like they did before surgery,  He suggested we get a few more opinions from other plastic surgeons.  I keep thinking I'm doing fine with all of this info, and then I find myself tearing up out of nowhere.

Probably the fact that Brynne came in complaining of chest pains last night and couldn't sleep because of it has added a little to the anxious feeling that has come and gone throughout the day.  I talked to the school nurse and principal and they are already discussing options for how to accommodate Brynne for the remainder of the year and what can be done for her next year. We have such great staff at our school caring and looking out for Brynne.

For now all I can do is make sure Brynne wears her patch after school, gets her meds, wait for the doctors to let me know when they will be seeing her again, and just love her.  But since she was back at  school and I couldn't do any of these things,  I went for some retail therapy and bought a rug that I instantly loved.  I'm not sure if I want it for my room or my dining room, I just knew I wanted it.

Then I decided I just needed to stay busy, so I went out and got everything I needed to get started painting the outside of my moms house which we are buying, and then lost myself in ripping out as many of the agapantha bushes from her front yard that I could fit into both of our dumpsters.  We even got a new neighbors to let us fill their green waste garbage can.  It felt good to be productive, to stand back and be able to see what an improvement I had made.  I loved having all of my family and a few extras come help me get things done.

I got some pretty bad news today.  Hard news. But still I have even more to be grateful for.  Good friends, good doctors, good staff at the school, hope for a more effective lid surgery, a really good start on our remodeling project, and let's not forget that great rug!   What comes next is kind of unknown, but there's no point in worrying about what might be while I have so much good right in front of me right now.  I'm going to pray. I'm going to sleep. I'm going to run. I'm going to go to Drew's baseball games and drive Garrett to the gym.  I'm going to get Brynne to her dance class. I'm going to turn my music up loud. I'm going to sing. I'm going to smile. I'm going to love.  When the time comes to deal with the hard stuff, I will, but until then I will enjoy the moments I have now. The good, the bad, and the unknown.

*The old pics of Brynne were sent to me via text from my sister Janelle last week as she had been going through old photos on her computer.  They aren't the very best quality, some are even just pictures she took of her computer screen. They came after the call from the school nurse as I was feeling a little low.  I loved seeing her tiny face from before we knew there was anything wrong, before her lids started to droop, before she was so much smaller than everyone else her age.  I have lots of other pictures of Brynne from this time period that might be cuter of her, or better quality, but these ones came as they are and boosted my spirits right when I needed them to because my sister is just stinkin awesome. I love you Janelle.

Wanted: Motivation

"I seem to have lost my motivation, if you see it let me know. In the mean time I'll start looking for it in here..."  -Jen Bohn via Instagram this morning

 My plan was to head to the gym as soon as I finished dropping off the kids from the carpool around 7:30, but I was totally not feeling that gym vibe yet. I came home and took care of a few more things and decided to grab my book to read on the elliptical so maybe I could distract myself from my headache and sniffles I woke up with.  I got as far as the gym parking lot, but then Tara started texting me and I decided it was a great excuse to just stay in the car a little longer...then Jeff started sending me messages and I sat a bit longer.  I just sat there looking at the gym and not wanting anything to do with it.  Finally I took a handful of Advil grabbed my book and went in.  I lasted a whopping 2 miles and decided I was just over it.  And then I passed by Judy's donuts on my way home.  And then I turned around and pulled right up.  Go big or go home?  I guess I was opting for the "go big". I decided to share my morning sucess story on all the social networks, absolutely certain everyone I'm friends with totally cared that I am pretty much turning into Miss Piggy.  But the best part is that I have some pretty dang funny friends so instead of hating myself just a little for those donuts, I spent my morning laughing.

 What was Natalie talking about? Oreo's for breakfast? Yeah, well that was yesterday's news

I think I'm on a roll...pun intended.  It's pretty much perfect timing with swimsuit season just starting and all.  I totally wish that fat was the new black. Wouldn't that be awesome?! Except that it's not.  I'm going running tonight, and crossing my fingers I can break out of this slump right quick so I don't have to start having everyone call me "Fat Jen" like Fat Amy from Pitch Perfect.  Cause that would be lame. Maybe a little funny, but mostly not.  Yeah definitely needing to go for a run...

The Birthday That Just Kept Going and Going and Going...!

At 6 am on the dot I was pounced upon mid dream, by all 36 lbs of Brynne. "I'm 8, I'm 8, I'm 8, can you believe I am finally 8?" I was just kinda wishing I could have slept until 8, but that's wishful thinking even on a good day, so I gave in and climbed out of bed.

Brynne wanted "breakfast in bed".   Which really meant that she wanted to climb into my bed to eat her breakfast after she was ready for school.  Her breakfast of choice? Eggo waffles...alrighty then!  She left for school nice and early, but not before giving me a list of directives for the day. "Remember that you promised to pick me up to take me out to lunch today like Clara's mom did for her...well we are going to go to Panda, and can you see if Grandpa can come?  Oh and remember for my birthday snack I don't want anything that is too sweet for my sweet tooth, just bring pizza, but get it from Pizza Hut and NOT Me 'N Ed's...and don't worry, grandpa is going to be picking me up from school today, but on your bike, Okay?"  Yup got it.

Not only was Grandpa able to join us for lunch, he even picked her up from school and brought her to Panda.  I came straight from a doctor's appointment and met them there.  My dad was able to bring in that GIANT balloon for her without her noticing and set it up on their "regular" table.

When she got up to order the cute manager behind the counter leaned over and asked Brynne if she just wanted her regular orange chicken order. I died.  Yeah sure it's nice that the workers remember her and are so sweet to her, but the workers remember her!!! With all her health issues, we have been advised to just have her eat whatever we can get her to eat since she doesn't really get hungry like the rest of us.

So, Brynne is a regular at Panda Express.  She eats that orange chicken by the bucket full.  At least she's eating and there are PLENTY of calories in that stuff. Always a bright side right? 

At the end of the school day I brought 5 large pizza's to Brynne's class and was there just in time to see her get her birthday spankings.  She was asked if she wanted to opt out of the birthday spankings, but of course she had no intention of doing so!

She was cracking up laughing the entire time she got all 8 spankings with a cardboard stop sign in front of her class.  

After they sang their own modified version of Happy Birthday, Brynne got to hand out her birthday treat.  Pizza Hut pizza slices, just like she wanted.

Brynne had really had a fun time at school because we were coming into the rodeo weekend and the whole school was told they could dress up for it on Friday.  Brynne's teacher Ms. Yamaichi bought all of her students bandanas and hats.  Brynne adored hers!

Just like she had asked for, my dad rode Brynne home on my bike.  This is always such a huge treat for her.  After we got back to the house we gathered up whatever we needed and then just Brynne and I headed off for a mommy daughter date to Color Me Mine.  I left my phone in the car and got ZERO pics of this part of the day :(

From Color Me Mine Brynne went straight to John's Incredible Pizza with my dad and Jeff while I left to pick up Clara and any of the boys that wanted to join us.  We ended up with just Drew and his buddy Connor and Clara and Brynne.  As soon as Brynne was tired of negotiating how many more bites of food she could eat, she and Clara were off to join the boys in the fun zone.

They rode the little cars, played ski ball, bounced up and down on the Frog Hopper, and I spun them around so fast in the Tilt a Whirl ride.  We were all walking a little dizzy after that one!

Drew and Connor won about a million tickets and were pretty impressed by themselves with the loot they collected.

Then came the best surprise of the night.  Linda! She runs the front office at Garlield.  This also makes her Brynne's lunch buddy quite regularly.  Her job description does not include bringing barrettes from home to leave in her desk to help brynne keep her hair out of her eyes, or storing an extra bottle of katsup in her personal little fridge because she knows how Brynne can't get enough of it on just about everything.  It doesn't include loving Brynne or making sure Brynne knows she is loved, but these are all things Linda has taken on herself.  She had called me Thursday to get all Brynnes birthday details so she could come "crash" the party, like she had been teasing Brynne and telling her she was going to do all week long.  She walked in to John's just as Brynne was choosing her prizes with her tickets, and the hug that Brynne gave her melted me.  Linda's son Chase and his girlfriend had also come.  They gave Brynne a birthday present with some of her favorite foods and a darling little outfit.  It made Brynne feel so special to have Linda care enough to come join us on a Friday night.  

Our final stop for the night was glow in the dark bowling at Fresno State.  It  is an absoulte blast and Brynne has been dying to go back since we went with Carter and Nan in January.  

Brynne and Clara used the metal frame to roll their balls down and got to use the bumpers, but whenever Brynne knocked a bunch of pins down she jumped up in the air and screamed like it was the biggest shock in the world!

My parents who haven't really bowled in years, rocked it.  My dad had the highest score of the night, but if you ask Brynne who won, she'll confidently tell you it was her.  You couldn't see everyones scores at the same time when all of our names were up on the board, so Brynnes score was the highest when my parent's names weren't showing!

Connor and Drew didn't even care that Brynne beat them.  They were too busy playing baseball with the rubber soccer ball and giant hammers they won at John's in between their turns.

When we finally came home late that night, Brynne was thrilled to find that she had a balloon and treats waiting at the house for her from Kylie and Allie!  She insisted I take a picture of her pretending to eat the giant cupcake balloon! Being thought of by the big girls made Brynne feel pretty dang cool!

The next day was Brynne's party with all her school friends at Pump it Up.  She decided she wanted to wear the outfit she got from Mrs. Linda to the party.  (The socks are just so she can go on the inflatables)

She had a handful of kids from her classes come to celebrate with her.

Kaci and Brynne had fun in the basketball inflatable 

 And they all loved jumping off the big island in the middle of this one!

 They went down the giant slide a million times, but never stopped looking a little surprised as they raced to the bottom!

 One of my favorite things though was the way the party host who worked for Pump it Up got in and really played with the girls.  She had them climbing all over her and she was laughing and smiling the whole time.  It totally made the party!  Too often the teenagers assigned to watch over the kids at these parties are bored and/or bossy just standing around blowing a whistle at the kids if they break a rule, but this girl was adorable! I'd do another party there just to have her around!

 Almost as fun as the cute party host, was Grandma! She had just gotten home from a long trip to Utah the night before.

Since we were well below the number of kids allowed for our party and there was plenty of room to play, Brynne said she didn't mind if Drew came with two of his friends. They stayed clear of the girls while we were in on the inflatables but once we came in to the party room to have pizza and cake and presents, the three of them played the role of teasing older brothers perfectly.  

They cracked themselves up as they photo bombed EVERY picture, and the little girls were fairly amused by them, so it all worked out okay.

Brynne had asked for a Texas sheet cake for her birthday, but none of the kids or parents there had ever had it before.  I guess they all liked it, because there wasn't a single crumb left in that pan when we left the party!

The girls were all sooo excited to see the gifts Brynne got, and Brynne LOVED every single one!

With her, anything Barbie is always a huge hit

Weeks before her birthday I began asking Brynne what kind of party she wanted to have.  She played around with soo many ideas, her favorite being a stay at home party where she would invite 25ish  kids all to our house for pedicures.  I did my best to explain the logistics of trying to paint 25 sets of piggies  to her, and finally got her to agree to have the party elsewhere , by also agreeing to allow her to have a few friends over the house after the party for pedicures.  

While we were outside they all decided to set their balloons free so that they could let them race....I just loved the colors in this pic!

The girls took turns soaking their feet in pedicure foot bath and played with all the bubbles

We got some music playing and then they all lined up on my kitchen counter. It was the perfect height for me to reach all their little toes for painting!

After everyones toes were painted and sparkled we set off on a hot fudge sundae run. Yeah that idea was kind of all me. I'd been thinking about it since I bought my Oreo's the other day! Not that the girls complained...

Friday night as Brynne fell asleep she told me it was the best birthday she had ever had.  Saturday night before she finally fell asleep,  she told me it was the very best weekend she had ever had.  I love nothing more than seeing that little girl so stinkin happy.  Somewhere on the fringes of my mind that thought is always there, "I'm not sure how many birthdays she's going to get to have"  I try to shove it back into the dark recesses of my mind, but the echo of it lingers. So maybe it's a bit much to let her have exactly what she wants once a year, but the truth is, I'm trying to cram in as much love and fun and goodness into her little life as I can for as long as I have the privilege to do so.  I love my girl with all of my heart, but I gotta say, when this weekend was over I was exhausted!