Thankful

Happy new year!  It was a mighty eventful close to 2015, as it always is.  I don't know how we manage to do it, but every year we get sick right before Christmas.  Last year Leah was sick the day of my work holiday party, and we had a repeat offender this year.  The week before Christmas, she had a high fever and cough that I think turned to croup.  She missed 3 days of school, and would have been a 4th if we didn't normally have Fridays off.  She finally recovered in time for Christmas to come.  Ty and I also battled colds those last few weeks of December.  Icky!!  This was our year to be in Peoria for Christmas.  We drove down with the car loaded full to the max on Wednesday, just in time to arrive for the craziness of a Cunningham Christmas.  Ty left on Sunday morning for a work trip and then home to Minneapolis, while Leah and I stayed until New Year's Eve.  We had lots of cousin time, and I got to spend a good amount of time with my best friend and another high school friend.  All in all, a very successful and fun holiday!

We have so very much to be thankful for, as I reflect on another year of blessings and look forward to this new year ahead.  There aren't enough words to express how much I love our little girl, or how grateful I am for everything about her.  She is the sweetest, kindest, and gentlest person I have ever met.  Her sense of humor and laugh are infectious, and she has a stubborn streak that I mostly adore.  She has a fiery spirit and lights up a room.  Because she has Spina Bifida, she needs extra support in her life, which makes me ever grateful for where we live.  

Minneapolis, and, in particular, our little corner of this city, has been very kind to us.  In less than a half hour, we can reach all the doctors, therapists, and services she needs to treat the different parts of SB that we deal with.  Our school district is amazing, and provided us great early intervention services from birth-3.  Ty and I work about 20 minutes from home, and half-way to our office is Leah's preschool, which is the best, best, best place for a child with a disability.  Her school offers an inclusive preschool, so she is in a class with many normal kids and also some who have other special needs.  They have been incredibly accommodating with all of her needs, and are a true partner to us.  

Then there is Leah's overall general health, which *knock on wood* continues to be excellent.  With the exception of her cold a few weeks ago, she's been incredibly healthy.  No sign of a UTI in over a year, which I can hardly believe!  We made it through 2015 without antibiotics or any major trips to the doctor's office.  Her neuro exam showed that her shunt is working well, and her spine looks good.  We will return to Spina Bifida clinic in a few weeks to do more kidney and bladder tests and a check-up by the rehab and physical therapists.  I suspect we'll start our bathroom training soon, and she may need some new braces to continue her walking.  All in all, 2015 was a very good year for us.

Here's wishing all of our friends and family a very blessed 2016!

It's the Holiday Season!

Christmas is just right around the corner, and we are definitely in the festive mood around here.  I love watching the joy and wonder in a child's face.  There is definitely a sense of magic this time of year!  The biggest and most exciting thing for us lately is that Leah finally got her new wheelchair.  We are so, so happy that it's here.  It came on Thursday, and she spent the entire weekend exploring new parts of the house, including new heights, that she hadn't been able to access before.  She helped out with setting the table and doing dishes, and got into a bit of trouble when she pulled things off the counters.  New problems that we hadn't experienced before!  She's taller than she is in her walker, and even with the rolling stander, her forward reach is limited.  This means much more freedom!  It also means that we need to set higher expectations for her to start helping out more around the house and being more independent, as a normal 4-year old would do.  

The other part I love about the chair is how light it is.  I can pick it up with 1 hand, and she's able to go much faster.  It definitely gives her a greater sense of mobility and independence.  Today she used it for the first time at school, and she said she had a great day.  It also comes with a pushbar, but I'm hoping that we won't need it much and that she'll be able to steer herself much more.  I want her to feel normal, and now she's sitting up taller and can be at the same height as the other kids.  It's so, so important for her to continue seeing herself as a peer, an equal to other kids her age.  This goes a long way in making sure she can keep up.

The new wheelchair was a shining light in an otherwise yucky week.  Leah woke up last Tuesday morning with a fever and was sick all week.  Her fever spiked at 103 on Wednesday, and didn't break until Friday.  Not the time of year to be getting sick!  Ty went to her school on Thursday to pick up all of her gear, and the class was only about half-full, as many other kids were out, too.  She had a fever and awful cough, so thankfully she's well on her way to recovery... except Ty and I are now under the weather.  Here's hoping get better soon before Christmas.  

Merry Christmas and Happy Holidays to all of our friends and family.  We have been so blessed again this year, and hope for continued fortune in 2016.  Be safe, and enjoy being surrounded by the ones you love.  Thanks for your support of our family!

Birthday Girl!

Where did the last 4 years go?  On Tuesday, our darling little girl turned 4.  For the most part, I loved 3 so much.  She got much more verbal and independent, and aside from a few little tantrums, 3 was a good year for her and us.  She woke up on Tuesday morning and told me that she felt bigger.  So sweet!  Instead of 1 party this year, we had several birthday celebrations.  We started with breakfast last Saturday morning with 2 sets of grandparents, and then we all went to a wheelchair basketball tournament at a local high school.  There were teams from all over the Midwest, so lots of wheelchairs!  It was pretty neat to see.  We were there to watch the little kids (5-10 years) play.  This is a team through the Courage Center, a local organization who does adaptive sports, and where we do swim therapy.  The team practices there on Saturday mornings, so Leah gets to see them after we swim.  Many of the kids on the team have Spina Bifida, so it's also fun to see the families that we know. 

The kids were happy to have Leah there cheering them on.  She went out on the court with them while they practiced and did some passing and shooting, though I say that loosely.  She was more interested in saying hello to everyone and being social.  My first inclination is to say that she did not get much athletic ability from Mom and Dad, but maybe she will surprise us in the next few years. 

Last Saturday night we cooked a meal at home and baked cupcakes with Grandma and Grandpa, so that was celebration #2.  We also opened up more presents.  She was more excited about opening the gifts than what was actually inside.  As soon as she opened one, she immediately asked to open another. 

Finally, on her actual birthday, I went to her school to read a story to the class and stayed for snack time.  We brought Happy Birthday Cupcake, which is a really cute book.  She chose to bring Skittles and fruit to share with her friends.  I liked visting her room and seeing all the kids interact with each other.  I also got to see that Leah was the last to finish her snack, while all the other kids had gotten up to find other things to do.  For dinner, a third set of grandparents came with us to eat at Leah's favorite restaurant where she ordered her favorite meal, macaroni and cheese.  Then we came home to open more presents and eat more cupcakes.  It was a great way to celebrate our favorite little girl!

Mobility

Leah's mobility has been growing and growing lately.  She's getting more independent and wants to move around on her own much more than we've seen in a while.  The other night she finally got herself up into her little foam chair.  It sits about 4 inches off the floor and she's always struggled with being able to get up into it and turned around to sit forward.  When she finally did it, she was so proud!  She also figured out how to get herself into her zip-zac, which was pretty amazing as well.  It's just too bad that she's not been too interested in zippa lately.  I think the days of zippa are over, and it might be time for us to pass it along to another family.  Tonight she got onto her skateboard and wheeled around the kitchen while I did dishes.  We are so proud and excited to watch her get more comfortable with her body and figure out her way to move herself around.

We also had another wheelchair evaluation.  Last fall at this time we had her chair evaluated.  Because she'd only had it for less than 18 months, we didn't qualify with insurance to get her a new one.  They made a few modifications to it, like removing the chest strap, moving the back rest farther back, and lowering the foot rest.  The changes have been just fine for the last year, but now we really need to get her into something more appropriate.  Ty met with a wheelchair vendor today and we'll be submitting paperwork to insurance to get Leah a bigger, lighter, and faster chair.  She's tried out a version of this chair from some friends before, and it's a big difference in how she's able to move around.  We're optimistic that this time we will get approval from insurance to get her into something more her size. 

She is still doing quite well with walking.  She is getting about an hour a day at school, usually after nap/rest time.  We're going to ask them to get her doing some walking in the morning as well, so she can walk around the room with her friends.  Right now her walking is usually done in the hallway while the rest of the class naps.  While Ty was getting her wheelchair evaluation, he asked about walking sticks.  Hopefully we'll get her with those pretty soon too.  Lots of news on her mobility!  Our almost-4-year old continues to explore and find ways to move her little body as best as she can. 

Family Vacation

We were busy in September, both Ty and I had a lot of work trips, and then we went on vacation for a week.  This year we went out east, with our first weekend in Boston and then rented a condo in Newport, Rhode Island.  It was beautiful.  The weather was great, in the 70's and 80's, delicious food, relaxing days, and great scenery.  We had a blast!  While we were in Boston, we visited the Aquarium.  Leah loved seeing the fish and feeding Myrtle the Turtle, a 550-lb. 90-year old turtle, a lunch of lettuce and brussels sprouts.  Our week in Newport was spent walking around, eating a lot of seafood, and swimming, both at the beach and the pools. 

This week reminded me that vacations like this are probably coming to an end.  Leah is really agreeable for the most part, but gets bored in the stroller and wants to be out exploring on her own.  Newport and Boston were not very wheelchair-friendly places with their old cobblestone streets and uneven curbs, so it would have been hard for her to do much wheeling on her own.  We'll have to get creative in the future on how we travel to a place that is more accessible and still checks off all the items on our family travel list. 

While there, we also had family pictures taken again.  I love having someone capture our family in our most relaxed state and getting some new scenery.  Here are some of my favorites. 

Summertime Wrap Up

September is here, which means that in Minnesota, summer is over.  School is back, and our days of seeing mid-80s are pretty few and far between.  Speaking of school, Leah's daycare was closed last week as they transitioned classrooms for the new summer schedule, so she was home all week.  It was a great reminder that I am meant to be a working mom and she was meant to be a daycare kid.  She was home each day with someone new, so there were a lot of people to entertain her, but still, she was home.  Not with kids and friends and structure that school provides, and that she loves.  We have had a few challenging moments with her these last few days.  She's sometimes uncooperative, like not putting her toys away or refusing to do things we ask.  She's also channeling her teenage self with the looks she gives us, is this what I get to look forward to in 10 years?  Yikes!  But, it reminds me of how lucky we are that she's a pretty good kid most of the time.  I know the little outbursts are because she's probably bored!  Back at it on Tuesday.

A few weekends ago we had the annual Spina Bifida walk-run-roll.  I just love going each year to catch up with our friends and see all the newest gear that everyone has.  Like last year, we hung back and didn't do the 3-mile course, instead spending the time on the playground and talking with other families.  The topic of Leah's wheelchair came up again.  She tried another boy's chair, which is a big bigger and a lot lighter, so she was able to move around much easier.  We'll be trying to get her into something better again this fall.  Typically a wheelchair is meant to be used for 5 years, so Leah's current chair is supposed to be with her until kindergarten.  But that's 2 years away!  I can understand how that would be the case for teens or adults who are done growing, but Leah needs something that she can move much easier and puts her closer to the height of her peers.  Last year all we got approved for was modifications to her chair.  Hopefully this year we will be able to get one to better fit her needs.

After the event, we had another family over for lunch.  Their little boy is 4 and goes to Leah's school a few days a month.  He and Leah have become buddies and he even calls Leah his girlfriend!  He uses walking sticks, which Leah wanted to try out.  She did pretty well with them, and got right back up after a few falls.  She's said before that she wants to walk with sticks so maybe that's in our future too?  If she wants it, we'll do whatever we can to get her there.  I think maybe getting back into PT this fall is going to be in order.  For now, we'll be enjoying our last weekend of summer!

How I Really Feel

Here is where it gets real, folks.  I usually try to be very positive and share the good stuff.  Most of the time I actually do feel that things are going really well, but at the same time I cannot ignore the fact that Spina Bifida is a huge, giant, monstrous pain in the a$$.  

There are days, when it's hard.  I can't stand that Leah's mobility is limited to wheels.  I wish she could run around with the neighbor girls down the street.  I wish she was able to get out of the stroller and walk down the sidewalk.  I wish we didn't have to think and plan out all the different pieces of equipment we'll need when we go anywhere.  I wish she could run into her room to get the stuffed animal she wants.  It's hard watching her watch from the sidelines.  Even when she's in her wheelchair or walking, she's slower than everyone else.  It is a challenge trying to pay for something when I have her on my hip while I balance my wallet and sign the credit card receipt.  Getting her out of a swimming pool or lake more often than not means leaves me with a huge wet spot on my clothes and soaked shoes.  We end up being an extension of her and she relies on us a lot for her mobility.  I am comfortable with doing that for her, most of the time, but there will come a time when she doesn't want that anymore.

It wasn't that big of a deal when she was first born, or even last year because she was still content with being carried around.  Now she wants to do everything herself... which I love!!  And it makes me so darn frustrated.  The other day we went running errands, and she didn't want to be stuck in the shopping cart.  But it was just me and I didn't have enough hands to direct her wheelchair and carry 2 boxes of diapers, so she was confined to the cart.

My head knows that life in wheels can still be very fulfilling.  One doesn't need functioning legs to get into Harvard.  All these mobility challenges can be managed... and most of the time I think we do a pretty good job of it.  We try to give her as much mobility as we can, and allow her the freedom to be as independent as is possible for a 3-year old.  But deep down in my heart I am scared and sad to think that she won't be treated right just because of her wheelchair.  That she will be perceived as less than she is because her legs don't work, even though the rest of her works incredibly well.  Spend 5 minutes with her and even at her most challenging, she is still a kind, sweet and sensitive girl.  She has an inquisitive mind, she is outgoing and wants to know everyone's name.  My little 3-year old plays the role of a campaigning politician extremely well - saying hello, kissing babies, waving - but the best part is that it is truly genuine.  How many people are going to miss out on that because all they see are wheels?  How long until she starts seeing the differences that others see, before she starts believing she's less of a person, and before that sparkle starts to fade?  I know I am biased because I'm her mom... but I assure you that she is something special.  She has a gift, there is a little gem sleeping down the hall, and I can only hope and pray that she is treated properly by others so that she continues to shine.  She can light up an entire room today.  Will she still be able to do that 10, 15, 20 years from now? 


As she grows from 3 to 4 and starts to become more aware of herself and others around her, I know she will start to see the differences.  She already knows that the other kids at school use the potty while she is still in diapers.  It hasn't seemed to bother her yet.  I am more afraid of those questions - why am I different? - than I am of having "the talk" with her (you know, the one about the birds and the bees).  I just hope I can do her justice when that time comes.  And hope that every day I can keep that spark alive.  Did I mention that she's something special.. and not because she's "special".  There is truly magic at work in that little 25-lb body of hers.