Wedding Weekend

HUGE CONGRATULATIONS to my brother Matt and his new bride Katie.  They got married last weekend in a beautiful ceremony on a gorgeous day and had a super fun party.  Ty, Leah and I flew down on Thursday night and came back home Monday morning, and we had an action-packed 3 days.  Everything was wonderful and we are so excited that Katie is now officially part of the family.  My sister also brought her boyfriend Ethan home for the wedding, which was the first time I had met him.  He is great and we had a lot of fun getting to know him this weekend.

Friday morning was actually pretty low-key, and then in the afternoon Leah surprised me by taking a 2-hour nap.  I had to check on her a couple times to make sure she was still breathing.  I suppose I shouldn’t have been surprised at the long nap since she didn’t fall asleep until 10pm the night before and then was up at 6:30.  But 2 hours!  She woke up just in time for the chaos to start.  The whole Cunningham clan came over to my parents’ house to attempt a family picture and then we headed to the rehearsal.  We had been talking about how to best get Leah down the aisle in her wheelchair and decided that we’d have her big cousin, Bailey, who was the Ring Boy (because he is not a bear), push her chair.  They practiced it a few times, and it seemed to go very well.  This gave him a very important job and ensured that Leah would make it.  It worked great the rehearsal, but would they do it on the big day in front of 350 people?

The wedding day was absolutely gorgeous, 75 and sunny, not a cloud in the sky.  Leah was cooperative with an early nap, and we were able to get several family pictures in our fancy outfits before heading to the church.  I brought her clothes to the church and got her dressed with all the girls.  The dress was a huge hit!  Katie’s wedding color was navy blue, and Leah’s little dress was navy with silver glittery sparkles, which I soon found out went everywhere.  (She still has silver glitter in her hair, 2 baths later).  She was so happy rolling around in her chair outside as everyone was getting to the church.  This was the same church where Ty and I got married almost 11 years ago and where my parents also got married 34 years ago, so it’s a special place for our family. 

At 2:00, the guests were seated, the bridal party started to line up, and I sat in the back with Leah in her chair.  Would she go through with it??  She was so cute, waving to everyone as they walked down the aisle.  The grandmothers, then the moms, the attendants, and then it was Leah and Bailey.  I got her chair to the center of the aisle, Bailey had his hands on the back, and then off they went.  Bailey’s mom and I ran up the side to meet them at the front, and I totally started tearing up as the whole church did a collective “AWWWW.”  I could hear the photographers frantically taking picture after picture, and then I heard it.  “WAHHHHHHHHHHH”  Yep, about half-way down the aisle, she screamed.  I got around to the front just in time for Bailey to park her chair and I got her out and quieted her down while Katie made her big entrance.  There were tears but they made it!  I watched the video later that night and had to laugh because it was hilarious!  Bailey was all business, totally straight-faced, he was on a mission.  Leah, even though she was freaked out, held onto the ring pillow until she chucked it at the very end.  They did much better than I expected, and I was so proud of them both.  I wish she was a little older so she could remember this.

After the ceremony we did a few pictures at the church and then headed to the reception hall.  We were early so I checked into our room (we planned to stay there overnight) and had about an hour to hang out there and have some quiet time.  I thought Leah might fall asleep but again, she was a trooper and powered through the reception.  Bailey and Leah were the only little ones at the wedding and then the other 3 cousins came to the reception for a little bit.  After dinner, all 5 of them got out on the dance floor, Leah in her wheelchair, and they went a little crazy!  It was so much fun watching them together, dancing around, Leah spinning in her chair.  I couldn’t believe her move, where did they come from??  Again, I wish she was older and could remember having so much fun with her cousins.  After about an hour on the dance floor, she was done.  Busy day, tired baby.  She actually pointed to the door and wanted to go home.  We took her back up to the room and she crashed.

On Sunday morning we went back to my parents’ house for brunch and to veg out.  We were all tired, it was rainy and chilly outside, and it was the perfect day to eat cinnamon rolls and take a long nap.  Here are a few pictures of the big day.  Enjoy!  And another big congratulations to Matt and Katie!

 

She's Really Smart

The other night I went back and read through some of my posts.  Unlike my mom, who keeps meticulous records of us (why didn't I get that gene?!), I haven't been very good at keeping Leah's baby book updated.  I was looking through the last year of posts to fill in some of the gaps in my records when I noticed that I do a lot of writing about what Leah does and doesn't do physically, but I haven't talked much about what's going on inside that little head of hers.   Maybe I just assumed everyone already knows, but I suppose there could be people out there wondering how Spina Bifida affects her mental or cognitive abilities.  Let me tell you, it doesn't at all...  She is really smart!!  

I am amazed at the things she picks up on, or remembers, or how quickly she learns something new.  It's pretty incredible, actually.  The other day we were driving home and we started to pass a truck that was pulling a horse trailer.  I slowed down so we could drive along side it for a minute, and told her to look out her window to see the horse.  She pointed outside (I'm not sure if she actually saw it or not), and said "nay-nay".  A couple days later we were driving down the highway and she pointed out the window and said "nay-nay".  How did she remember that?  We hadn't talked about it since we were in the car that day.  Her vocabulary is growing everyday and she's starting to string 2 or 3 words together, like "bye-bye, mama" and "hi, dada".  Just this week she has been putting sounds to her sign, and instead of just signing for milk, she signs and says mi-mi. 

Aside from the language and memory, what amazes me the most is how sensitive and empathetic she is.  It's pretty incredible.  She holds and hugs her little baby dolls and gives them kisses.  She has a book of baby faces, and she gets so sad when she looks at the baby who is crying.  She holds it up to her face and gives the baby a hug.  When she hears another baby crying, she points and gets a very concerned look on her face, as if it really bothers her.  I hope she stays this sweet and caring little person that everyone wants to be around.  

So there.  Yes shes uses a wheelchair.. blah, blah, blah.  What really matters is that she is a kind and gentle little girl, she's got a great sense of humor and gets how to joke around, and is just as smart as any other kid I know.  I suppose I am slightly biased since she is my kid, but I'll say it anyway.  She is really smart!

Hope

I was looking at the list of all my posts the other night and realized that I have done 100 of them.  That's a pretty big milestone!  When I started this blog 2 years ago, the intent was to share our story with our family and friends, many of whom live far away from us.  We wanted everyone to read about Leah and get to know her because Ty and I aren't the best at keeping up on other forms of social media.  I've mentioned before that reading the blogs of other families was (and still is!) a huge comfort for me when we first got our diagnosis.  The doctors weren't very optimistic about her quality of life, and we thought that our lives would totally be turned upside down in trying to parent a child with special needs.  Reading about how other families lived normal lives and realizing that SB is very manageable gave us hope that our little girl would not be a burden to us... in fact, it's been the exact opposite!  She is an absolute joy, and anyone who meets her instantly falls in love with her.  We have had strangers go out of their way to tell us how beautiful or cute or funny she is and how she made their day a little brighter.  Just in our little community, she is touching lives from the lady at the farmers market who gives her blueberries, to the retired airline pilot at the coffee shop who saves the funny papers for her on the weekend, to the butcher at the grocery store that she waves to, and the list goes on and on. 

I hope that our little corner of the internet has touched someone's life.  I frequent an online SB parents' support group, and have met and become friends with some of the moms there (it's how I met Westin's mom!).  I also have started following a lot of their blogs, and I hope that some of them are reading ours as well.  It's probably once a week that another new mom gets her SB diagnosis and we all jump to her rescue to tell her about the amazing things our kids can do.  Hopefully some of those new moms have read our story about Leah and realized that they can do this.  I relive our Diagnosis Day each time I read about one of their stories, and I also realize how far we've come. 

The other weekend we attended a Spina Bifida event.  It's always so great to see our friends and meet new friends.  As Leah gets older, it will be very important for her to be around other kids with SB.  I want her to have mainstream, "regular" friends but I also want to her feel a connection to the SB community.  These are her people.  I want her to look up to the older kids, watch them get around in thier equipment, learn how to handle different challenges and setbacks.  I want her to be a role model to the younger kids, and encourage and cheer them on.  The same goes for Ty and I - we learn from the parents who have been there and done that, and we want to support those families just starting out in this journey. 

Those events are bittersweet for us.  There's the one side where we see kids who are walking, who don't have shunts, who have the same lesion that Leah has but who function much differently.  In a way we feel a little bit sad about what she can't do.  We also leave there feeling very blessed.  There are kids who have had multiple shunt revisions, have club feet and have to be casted or have had multiple surgeries, some kids need trachs or oxygen.  Most importantly, we walk away from those events talking about how to challenge her more, what more could we do with her, how else can we push her.  It was at this event last year that we saw someone with a zip-zac, and it's been the biggest blessing to her in her mobility.  Just a few months ago we were at a different event and saw the rolling stander (the same thing we took to the playground the other day), which ended up in our house a short time later.  This time we did not come away wanting any new equipment, but we did walk away thinking about what other kind of therapy we can be doing with her.

Speaking of therapy, we are done with Physical Therapy, at least for a while.  I talked about this a little while back that we'd be wrapping up around the end of the summer, and now we're done.  Our therapist just could not keep her engaged and wasn't teaching her many new things lately.  Over the past 8 months, we were very successful in getting her to master the zip-zac, and then the wheelchair, and working on crawling.  Just recently we focused on climbing and getting down, which we will continue working on at home.  We did get on the waiting list for aqua-therapy and will be checking out some other places to get her into a pool.  She absolutely loves the water and it would be great to get her swimming this fall.  We will probably head back to PT in the spring when there are new things for her to learn.  Dr. Marker encouraged us to start getting her into a walker around 2, and that would be a great thing to do next spring.  She loves being mobile and seeing how much she loves her stander makes me think that she'll do very well.  Right now we're going to keep focusing on increasing her mobility and making sure she's staying on track with all those other developmental milestones that an almost-2-year old should be hitting. 

So after now finishing my 100th post, I want to thank all of our loyal friends and family who have followed us from the beginning.  We really appreciate your love and support.  To all fellow SB moms, thanks for reading our story... I hope you can relate to a few things here.  I sure love reading about your kids.  Thank you for being a shining beacon of light when things looked really bleak at first.  Thank you for continuing to share you story and reminding me that our kids are wonderful and awesome and for being a great role model for me.

If you're a newly diagnosed parent, please know that there is hope.  There is lots of hope, and lots of love, and lots of laughs.  Your baby will surprise you in more ways than you can count.  Your baby will prove lots of doctors wrong, and you'll prove to yourself that you can do this.  It's hard, it sucks sometimes, there are lots of things to worry about, but nothing worth anything ever came easy.  Remember that you're not alone and that someday you'll be on the other side and wonder why you ever questioned this in the first place.  Until you get there, just hang on.

Play Time

One of the biggest challenges about having a child with special needs is finding places for her to play.  Most playgrounds have mulch or sand around all the equipment, which makes it difficult for her to get around.  I suppose she could crawl around in it, but she's still at the age where she's putting everything in her mouth, and honestly I don't like how dirty she gets when she's on the ground (yes, that makes me a bit of a lazy parent).  I'm always excited when I find a place that's wheelchair-friendly, which is where we went today.

This playground is not totally wheelchair-accessible, meaning she could not get up onto all of the equipment.  She was able to roll around on almost everything because the surface was rubbery and it was surrounded by concrete.  And it was almost totally flat, so she was able to get around very easily.  I opted for her dynamic stander this time.  She's been more excited about using it lately, and I think it's a little bit easier for her to use right now than her wheelchair.  It's also very good for her to be standing up... both for bone growth and development in her legs and feet but also for internal circulation and digestion.  Double win!  I thought she'd only want to be there for a little bit, but I had to be the one to pack up and drag her out of there after over an hour.  She kept saying "more, more" when I told her it was time to go.  We will definitely have to go back. 

Here are a few pictures of our outing this afternoon.  You can see how easily she was able to get around.  She liked going under the playground and hiding from mom.    She also loved the swing!  It's one of her favorite things to do at any playground.



Summer Pictures

Enjoy a few pictures of our summer adventures.

Getting ready for a boat ride.

 

Water table.  She probably had a leaf on her hand that she wanted me to get off.

 

Playing piano to her audience.

 

Underwater Aquarium at the Mall of America.

 

 

 

 

High Chair Fun

 

Lake Girl

 

 

Go Twins!

What's New?

Well, what is new in Leah's life lately??  Lots of things!  And thankfully nothing really SB-related is going on.  That's always good news.  July ended up with a lot going on and moved in a very busy August.  Leah and I came back from our trip to visit my family on Wednesday and we just barely missed seeing Ty at the airport... literally, by about 2 hours.  He came home on Friday from a work trip and then we had friends in town over the weekend.  Leah's little boyfriend, Westin and his parents came down from North Dakota.  Westin is just a couple months younger than Leah and he also has SB, and he is just about the cutest little boy there is.  We had another family over Saturday night for a cook-out whose daughter, just a few months older than Leah, also has SB.  What a great weekend for us to spend with our friends.  It's really nice to be able to compare notes and ask each other questions about our kids' care and doctors and what works and what doesn't.  We've been really fortunate to have a great little community here.  While I love talking to other parents, I also really love that Leah is around her own people.  It will be important for her to learn from them as well and find others to relate to who are just like her. 

Then I had just a day to repack my suitcase and headed down to Wichita, Kansas, on Tuesday.  I work with a sales team and we had our annual meeting there this year.  Last year was great as our meeting was in Minneapolis and I wasn't ready to leave my 9-month old baby for 4 days.  4 days is a long time, especially when our mornings started at 7:30 and most nights were until at least 9:30.  Boy was I tired at the end of the week!  I know I should enjoy my time away, but I didn't sleep well and missed her like crazy.  I think she missed me too because she would not let me put her down all day.  Daddy did a great job taking care of everything around the house while I was gone.  She had a great time with him and they were both alive when I came home... which was really my only expectation.  Laundry?  probably not.  Cooking dinner?  not really.  Alive and breating?  check.

What else is new with Leah?  Well, she turned 21 months old on Saturday.  Wow, just a few more months until her 2nd birthday.  Her little personality has really come through.  She is hilarious.  It's really fun to see that she has a sense of humor.  She has several words, mama, dada, baby, bye-bye, doggy/monkey/donkey/ducky/kitty is all the same word, and she says minn-ahhh for kitty, which is just about the cutest thing.  She also says her own name, la-la, and she can say Izzy, the dog next door.  Then there are still a few signs in the mix, like more, please, milk, all done, and thank you.  I was surprised today when we were working on colors and she knows a few of them.  That certainly isn't my doing and I'm glad she is learning something at school! 

Speaking of school, we had a moment of panic yesterday because we were still on the waiting list for the fall.  When we enrolled Leah back in June, they told us that they were full in September but they would put us on the waiting list.  That was fine because we really needed her to go somewhere new and we were hopeful that a spot would open up for her.  I talked to an enrollment coordinator yesterday and she said that Leah was still on the list, and that we should start looking for other options.  The only way Leah would get in would be if another child left the program.  Of course we got very nervous.  We don't want her to leave and we also would have a short period of time to find something else.  Ty talked to one of her teachers yesterday to ask about how the waiting list works, and she and another teacher talked with the enrollment coordinator to let them know how much they really wanted Leah to stay.  That meant a lot to us and just goes to show how much they love her like we do.  Thankfully we got the call this morning that they found room for her!  Seeing what she's been able to learn and the way they love her reinforces for me what an amazing place this is.  This is the absolute best place for her. 

Now the busiest part of our summer is over.  We just have to get through the last couple weeks of our home renovation.  What started as a 5-week project has turned into 9, though we knew going into it that it would probably take longer.  We'll both be glad when it's over so we can have our garage and driveway back to normal.  I also cannot wait to see everything finished.  We did a few must-do items, like new roof, siding and a few windows.  We also did some cosmetic updates like new lights, painting and stonework.  Our 80-year old house was looking a bit worn and this will set us up to be here for a long time. 

Our next big event is a wedding.  My brother is getting married in a few weeks, and Leah is the flower girl.  I'm not sure how she'll do with it and there's a big question whether she'll actually make it down the aisle or not.  She's getting really good in her wheelchair, so I'm thinking about bribery... just need to figure out what will be incentive enough to roll through the church in front of 300 strangers.  I'll keep you posted!

Special Needs Spotlight

I have become a big fan and follower of many different blogs.  A lot of them are of other SB moms, but there are others I follow whose kids have other special needs, like Down's Syndrome or dwarfism or micro-prematurity.  There is one blog I found of a mom whose daughter was born with a rare condition called Microgastria and Limb Reduction Complex.  She has 2 darling little girls and another one on the way and has a great blog.  It's refreshing to read about another family going through similar challenges and seeing how they find humor and joy in the everyday.

Anyway, part of her blog is to have a weekly Special Needs Spotlight where she invites a parent or child with special needs to share their story.  Guess who is the spotlight for this week??  LEAH!!  It makes me a little bit nervous to start sharing my little corner of the Internet with more people, but it's also a great way to promote awareness of Spina Bifida and show others what it means to live life with a disability.  Ty and I were given such a grim prognosis of Leah when we got the SB diagnosis, and our goal has always been to try and help other families getting the same news, for them to see what a blessing Leah is to us.  If we can help one other couple, then it will all be worth it. 

I am very proud of our little girl and hope I make my family and extended SB family proud by our spotlight.  You can read all about it here:

http://www.thislittlemiggy.com/

At the top of her blog is a section called Special Needs Spotlight where she keeps the history of all the past spotlights.  You can browse through some of them and read about the amazing stories.  It's how I found a few of the blogs I now follow.  Enjoy!

*** UPDATE ***

If you visit the link above, it will take you to the full blog with the most recent post up at the top.  You can scroll down to find Leah's spotlight, or you can go to it directly:

http://www.thislittlemiggy.com/2013/08/special-needs-spotlight-leah.html