April 11, 2014

Facebook killed my blog!

Well, maybe it didn't kill it but it sure helped keep it quite for a while.
It's been so long!  Where do even I begin?
Sadly, it's just become way to easy to post to Facebook that I have stopped posting here.

I recently slowed down enough to think about possibly blogging again and why I even started blogging in the first place.  Blogging has been an important part of my life since I received Annabelle's Spina Bifida diagnosis when I was pregnant 5 years ago.  Being able to share our challenges and celebrate our successes openly was extremely helpful for me. Blogs connected our family with many other families living with Spina Bifida.  For me, knowing that I was not alone during those more challenging days meant everything. I can still vividly remember being pregnant and looking at blogs of other families and gaining so much inspiration. Sweet Katie and precious little Nellie were two girls who's smile and daily determination gave me hope each week.  I have been told over the years, on more than one occasion that our Annabelle has done this same thing for other families. Knowing this makes me so happy and more determined than ever to return to blogging.  I will be forever grateful for the awesome inspiration I received when I needed it the most.  My pregnancy was a very scary time and during those first few years of Annabelle's life when things just felt so challenging for us blogs were a lifeline for me.  Blogging allowed my to build real (online) friendships with other moms who were pregnant and scared as well.  These women have become such great friends to me.  Our children are the same age and although their challenges are all a little different we as "extra need" parents are the same.  Our hearts are connected.  

It seems wrong and some what unfair of me to stop blogging just as Annabelle has begun to flourish into the amazing young girl she is. What if the blogs I regularly sought out when pregnant only shared the difficult times and didn't continue to share the beautiful and amazing parts of their lives.  I can only imagine how that would have affected me and my hope for our future and what a poor representation of life with Spina Bifida that would be.

So, if you are new to this SB journey please know it will be okay.  Please know that although life seems really scary right now I assure you it will not always feel this way.  Don't get me wrong, life probably won't every be easy but I don't know many parents whose life is easy.  I assure you that your child will inspire you and impress you and those around you on a regular basis.  You will become a better version of yourself - probably not everyday but on the whole.  You will meet and be embraced by the most amazing community of families who support, love and build each other up.  Your heart will melt by the generosity of others. 

Annabelle has been blessed with good health and having her as our daughter has given us so much happiness.  There are still days when I mourn the life I thought we would have or I hurt for the struggles I anticipate she will encounter throughout her life.  I try and allow myself these moments and then I move onto enjoying the beauty that is my life, my family. When I stay present there and focus on all that I have, I find that I have very little time to miss what I don't have.


Here are some highlights from the last 6 months.  
It's crazy to think that Annabelle is already 4 1/2 years old.


Annabelle leaving Build A Bear on her birthday (July 29th). She had a GREAT time building her bear! The store was super accessible and I was very impressed with the whole experience.


Annabelle is always willing to try new things if her daddy is there.  She is totally and completely a daddy's girl!
In September, Annabelle returned to preschool.  She started out going 3 days a week and kept that schedule until the end of the year.  When she returned in January 2014 after the Christmas break she starting going 4 days a week (Friday's off).  I'm pleased to share that she really enjoys school and has great teachers.  Of course she wore her Peach's Neet Feet for her first day of school.


Being the beautiful girl that she is at the Japanese Gardens.
Enjoying Legoland
Loving life on vacation in Carlsbad, CA
Being the cutest firefighter for Halloween
Me and sweet girl on Thanksgiving 2013

Being happy with her daddy


Annabelle was an Angel in the annual Christmas Eve mass at church.  What joy this brought our family to watch her up on the alter with all of the other children,  Such a special night.

Sparkler fun on New Year's Eve!

Ice skating as a family was AWESOME!
She was practically running on the ice.  Her excitement level was off the charts!  Don't shy away from activities that seem difficult for your child (this is my norm, but am working hard to change this).  I am learning how many wonderful activities can be adapted to make them a reality for your child. 
Ice skating was so much fun!

Yep, one random Friday in February we met a group of awesome firefighters.  They let us sit in in the truck and try on their outfits. Then they just might have driven Annabelle and her two brothers around the neighborhood for fun.  Yep, it was pretty amazing!

Playing at the park is one of Annabelle's favorite things to do.
video

 Because we live in Southern CA we are blessed to have many fun beach days throughout the year.  These pictures are from March.

I hope this catch up update gives a small glimpse into the full life that Annabelle is living.  She is NOT a Spina Bifida "sufferer"  I hate this description you read so often.  She is not suffering, she is living! Does she do things differently than some?  Yes, but I assure you she always finds a way. She is a blessing to our family and we thank the Lord everyday for making her our daughter.  We truly are the lucky ones!

July 27, 2013

Because

Because her innocent smile makes my heart so happy.
Because her playful nature can always brighten my mood.
Because her willingness to try new things and not give up inspires me daily.
Because my sweet girl will turn four on Monday.
Because my baby has somehow become a big girl.
Because I'm always a little more emotional around birthdays.

July 12, 2013

My issues, not hers

I was talking with a friend recently about how I rarely blog anymore.  I commented how it was so much easier to do it in the early years when there was so much going on.  She was in and out of the hospital, having surgeries and blogging was a great way for me to share and it helped me to process all that was happening.  However, for the last two years things have been different, really different.  Do I dare say life has become very "routine".  The big difference is that Annabelle has been very healthy!  She's been sick only a few times and has only had one non-Spina Bifida related surgery (tonsillectomy).  We are truly thankful for her good health and the progress she has made.  When I think back on those first two years it honestly seems like another life.  It was HARD, it was HARD on all of us.  She was so sick all of the time.  It was a very scary, stressful time.  I pray we never have to  repeat those days.
However, with that said I would be lying if I acted as if there hasn't been some challenges.  Unfortunately, stress and fear doesn't just go away.  It stays with you and it creeps into your day when you least expect it.  I worry a lot.  I worry too much.  I get overwhelmed easily and its hurting me.  I'm glad though that I am the one hurting and not my girl.  She is still the cheerful, optimistic, ready for anything spitfire she's always been.  She sees the world and gets excited.  She doesn't see the barriers I see.  She wants to do everything her brothers do and is determined to make it happen. I pray that she will always have that determination and that spark to get things done.  I pray that my fears and worry for her future won't ever hold her back.  
These photos are from this past Father's Day, Sunday June 16, 2013.  I love the way they capture her and all her personalities!           
She sat peacefully watching the waves.  I watched her and wondered if she was sad to not be running around and climbing on the bars like her brothers.
You be the judge, but I think she was having a fine time kicking back giggling in her stroller.
 
Here she is coming to get me!  The boys were playing tag with Branden and although she tried to join them she ultimately decided to come hang with me.  I worried she was feeling left out.  
She wasn't!
She wanted to play tag with me.
She wanted me to chase her - so I did!
 She was giggling the whole time!
 Then came a little bit of her girl drama.
She was smirking the whole time.
 Then it was play time again........
Oh how I love this girl!
 Day's like that help to ease my worry and fears.  When I see her beautiful smile I am once again reminded that these are MY issues and NOT hers.  She is going to be just fine, better than fine.
My girl is going to be great!  My girl already is great!    

July 10, 2013

Keep pushing forward

I had been talking with Annabelle's Physical Therapist and her Orthopedist about wanting to get Annabelle a pair of canes or crutches before the end of (last) year. I started these conversations early in the year (around February) and as we approached October it was apparent that nothing was going to be done about it. Sadly, I knew it was time to seek out some additional partners who were as serious as I was about getting Annabelle to the next level. That is when I reached out to Laurie, a highly respected physical therapist in Orange County. She is the owner of her own private practice, South Coast Therapy. I had been given Laurie's name and telephone number about 9 months prior and had been holding on to it. Around summertime (2012) Annabelle had been placed on what's referred to as "maintenance mode" and was only receiving PT twice a month which as you can imagine I was extremely unhappy about. I was told it was the correct frequency for where she was at but sadly I knew it had a bit more to do with some staffing issue. We made the decision to take a short break from our regular physical therapist to do what's referred to as an "intensive". Laurie has a very tight schedule with her patients and teaching schedule at a local university so the fact that we were able to be seen by her was truly a miracle and such a blessing. It was a wonderful experience to say the least! The intensive consisted of Annabelle being seen 2 to 3 times a week for 5 weeks. They originally wanted to see her 4 times a week for 4 weeks but I just couldn't manage that heavy of a schedule with her other commitments and my commitments to our other two children. Annabelle made great progress during her five weeks with Laurie. Laurie, the new PT had these fun little canes at her office that she introduced to Annabelle on our first visit. It was so awesome to see how well Annabelle took to them the very first time Laurie handed them to her. She was very interested and they were great to work with even if they were a bit too tall.
During the time Annabelle was being treated at South Coast Laurie not only worked with Annabelle but she tirelessly worked with our insurance company to find Annabelle a pair of canes that would fit her needs. We quickly found that there are NOT a lot of pediatric canes out there and most are pretty heavy. This was a bit disappointing but Laurie didn't give up! We didn't find exactly what we wanted but what we settled on has been good. Laurie ordered Annabelle a set of blue (pink and red were sold out) pediatric quad canes and they were delivered just in time for our very last "intensive" session with Laurie. We see this canes as a good bridge between the walker and forearm crutches that she will one day have but is not ready for yet.
Fast forward less than six months and wow, it amazing to look at the great progress she has made! We returned to our former therapist in January (who we really do think is great) with our new canes and are finally on a twice a week schedule.
At Jack's First Holy Communion - May 4, 2013 
Although, Annabelle does not use the canes every day she knows how to use them and is getting stronger and faster with them daily. We remember that it took her a full year to become proficient with her walker so we have never had unrealistic expectations about her use of the canes. We did however know that in order for her to keep pushing forward we needed to get those canes ordered. I am so thankful for the choices we made and for the progress Annabelle is making.  
Believe in yourself parents - 
You know your child best and you know their needs.  
Keep pushing forward!







July 7, 2013

First Day of Preschool

 I knew the day would finally come that she and I were both ready for her to start school and it did.  On Tuesday, April 9th Annabelle had her first day of preschool.  There were a few tears from us both but mine were a mixture of sadness and happiness.  I was sad because she is my last baby and she is growing up so fast but I was happy because I knew she was ready and that she would love it.

She attended 3 days per week from 9 to noon and it was a great introduction to being away from mom and making friends.  She was only there 8 weeks before it was time for summer break but it was definitely a good decision to start her even though it was late in the year.  I won't lie and say that it was a smooth experience because it wasn't.  There were some definite bumps in the road but I am happy to have worked through them at the end of this year and not at the beginning of next year.

I like the teacher and her teachers aides whom she will thankfully have again next year.  I do not care much for the school administrator/principal and I know that she and I will probably continue to clash over issues.  We had two major issues the first week regarding the drop off location and pick up location.  Thankfully, I was able to show a valid reason why it was in Annabelle's best interest that I drop her off each morning at the classroom door and NOT all the way across campus like they had me do the first two days.  Although this is the designated drop off location it was WAY too far for Annabelle who tends to walk slow most of the time.  Their solution was to put her in a stroller to keep her with the rest of the class.  I was not okay with that since Annabelle can walk.  I also made arrangements to pick her up at the classroom door instead of all the way across campus so that I could immediately take her to the restroom to catheterize her.  By 12:15 when school lets out she is overdue and we made the decision to not let the school aide cath her.  Once she is in school for the longer day I will demand that it is done by the school nurse and hopefully by that time she will be close to learning how to cath herself.

In the 8 weeks she was there she met 3 out of her 5 IEP goals - yay!  The 3 goals she did not meet were gross motor related so that wasn't too surprising.  I had mixed feeling if I wanted her to attend summer school or not but she did not qualify so it became a non-issue.  I was told that only kids that were behind were able to go.  I know she liked school but I know she enjoys playtime at home with her brothers and I way more so I guess it all worked out as it should.

School starts up again in September and although I know she will have fun I am not looking forward to the "drop off" tears as I call them.  Thankfully, when she did cry (which wasn't ever day) it was only a brief wimper and was done as soon as she walked into class but it still made me a little sad until pick up.

March 31, 2013

Annabelle's Easter Photo Shoot

Our princess was having a blast posing for pictures for her daddy this weekend.
Does anyone know where our baby has gone?  She has truly blossomed into an amazingly independent little girl these last few months.  Where does the time go?  There are no words to express what a true blessing it is to be her parents.