Our Disney Trip Catch Up

We left for Disney World bright and early on December 26th.  A sweet and very giving family in our church invited us to use their timeshare week in Orlando, since they were unable to use it, and we just couldn't turn that down.  So even though Disney wasn't in our 2012 plans, we saved and decided to make it happen. 

I must say that the thought of leaving my house full of Christmas décor and Christmas disaster was hard for me.  I like to clean it all up and pack it away in the days to follow Christmas.  I had to keep telling myself that it was okay, and it would all be there waiting for me when we got home.  You may not understand this worry unless you are a bit type A, but for me it made me feel stressed.  My sweet husband knows this and promised we would get it all done!  He helped and it wasn't as bad as I thought.  Letting go is good!

Back to Disney...I must just say that Eli had a bad ear infection and began Augmentin right before Christmas.  It killed his stomach.  I mean killed it!!  I mean he had diarrhea for all 14 days that he had to take it and a few afterwards.  I don't just mean a little, I mean explosive, everywhere, oh my goodness, what do I do, kind of bad diapers.  I just share that little bit of unwanted information because it was a big part of our trip!!

Oh yea, he threw up in the car on the way and we had to wash and take the car seat apart before we could go to Target to get more supplies.  You know more diapers, Destin, Pedialyte, probiotics, yogurt, and anything else he might eat or drink. 

The next morning we headed to the Magic Kingdom.  We were prepared.  He was double diapered, creamed like there was no tomorrow, and we had extra, extra changes of clothes.  When I say that I saw each bathroom at Disney, I mean, I.SAW.THEM.  I changed him every hour or so and each time it was such a process.  I know some moms behind me wondered why it took me 15 minutes to change my child...if they only knew.  Thankfully, we knew it was just his meds and not him just being sick.

That continued for the duration of our trip.  We only had one terrible mess when Kevin got completely pooped on while we were riding the train.  I offered to buy him a goofy shirt, but he didn't take me up on the offer and resorted to wearing a jacket. 

Other than Eli not feeling well, we had such a wonderful time.  My girls were in heaven and Disney did not disappoint on the Christmas Magic.  The snow falling on main street while Christmas music played each evening was my favorite. 

We waited over two hours for Eliza to meet Tink and her sister, Periwinkle.  She was star struck for sure.

Ella got to hold Ariel's hand and parade around the restaurantt at our character meal and she couldn't stop gushing.  She has told us that she wants her hair to be redder so it will be more like Ariel's. 

We pushed it hard and did LONG days.  The parks were PACKED...like at capacity packed, yet we still had a great time. We fast passed our way through the parks and did everything we wanted. 

We made memories to last forever...at least I have a lot of pictures to prove it!

Day One...here we go!

I loved all the Christmas decorations.

We questioned bringing all the strollers, but we were so thankful we did.

It was COLD in Florida!

Eli loved it all, despite not feeling well.

He caught some cat naps here and there. What a trooper!

Five and three was a great age for meeting the characters. 
Eli liked them as long as they didn't touch him!

The Christmas parade was amazing!

Waiting to meet Tink!

Her little dream come true!

And Ariel...Ella's favorite!

Day 2 Animal Kingdom

My sweet boy!

A little tired on day 2!

Squeezing in the bushes to watch the Animal Kingdom parade.

Mommy was feeling it too!

Day 3 back to the Magic Kingdom...it rained a lot!

Freezing, tired and waiting for two hours to watch the light parade.  We took turns holding our
good spot while the other did bathroom trips and got snacks.

Day 4 Epcot

Doing their "Jessie" pose!

Our big princess lunch!

Sweet little Cinderella!

And beautiful Ariel!

And brother who was more concerned with lunch!

Ariel telling her that she looks just like her...made her year!

Still gushing!

 

We did Disney with three small kids, one sick and lived to blog about it!  What a fun and special time we had together as a family!

Back to Blogging

So, I am back to blogging.  Over the past year my blogging has slowed way down as life was busy,  full of challenges, and at times felt like we were still in survival mode.  I have decided once again to get back to blogging for a few reasons. 

1) I began working on turning my little ole blog into a blog book for our family.  I uploaded it all and it is too big to be in just one volume, so I need to split it up some more, but WOW!!  It is like the best family scrapbook ever!  It made me so excited to see five plus years of our life bound in book form.  My kids love to look at their scrapbooks.  They love to see themselves when they were babies and I hope they will one day read our blog book and see all the funny things they did when they were little.  I also hope they will see the hard times that were lived out while they were really to little to understand, and see that God makes all the difference.

2) I have also been motivated to blog again as I read the other night on one of my spina bifida mothering forums of a mother who had been diagnosed with a sweet baby girl with SB.  She was told her baby would be a vegetable, that she would have a poor quality of life, and that the best thing for her to do would be to terminate the pregnancy.  I so clearly remember being told on the day that we received Eli's diagnosis that the best thing for our family and for our then 2 1/2 year old and 18 month old, would be if this baby didn't make it.  Just writing that lie makes me so sad.  If you know my girls and our sweet brother you know that is just not the case.  He has been both the biggest surprise and blessing to our family.  We cannot get enough of his sweetness.  

I write all that to say that this sweet mother who was struggling through the regret she was feeling said that she wished she would have found the forum sooner.  She wished she would have read Spina Bifida blogs and learned more rather than just taking an uninformed doctor's opinion. There were many great blogs that encouraged me in those early days and as we went through fetal surgery.  I was so thankful to get a little peek at what children with spina bifida are like.  It is my goal to share with the world on my little piece of this thing called that Internet that Spina Bifida is not the end of the world and with Jesus, faith and hope, life is worth living. 

So, I look forward to once again sharing our family and I hope that someone will stumble across our little blog and be encouraged and find hope. 

And now for a big i phone photo dump!

The bear was having a baby! 

Three sleeping kids are always fun to get inside the house!

He loves his sissy's babies. 

But, he is all boy too!

The therapy train!  Big sisters don't like to be left out.  They love Mrs. Cindy too!

Ella teaching her class!

Oh the messes these two make!

My little artist.  He love to color.  Check at that bicep...little buddy has such strong arms!

Walking with his chair.

He climbed onto the stool without his braces.  This is something I really never thought possible.

Hey mom, what's for dinner?

Three good dental check-up!  Eli, hands down did WAY better than his big sisters did at their first visits.

Sweet sisters.  I am so glad they have each other. 

 

Sweet Eliza doing her cheers!

Check back soon to see more catch-up!

7 years later

7 years ago today I was on the verge of becoming a mom for the first time.  My tummy and other body parts were huge, I had counted down each and every week since I first saw those two pink lines, I had been having contractions for weeks and I knew my life was about to change forever. 

There was no nursery ready and waiting, no happy baby shower, no crib, stroller, freshly washed tiny baby clothes hanging in the closet, or even a diaper in the house.  The question still loomed if this would be a baby boy or a baby girl and late at night when the house was quiet we would talk about if we thought it would have red or blond hair. 

One might think that this little one was not wanted, due to the lack of our preparation, yet that was entirely not the case.  We'd planned, worked, saved and even calculated calendar months all in preparation for this little one.  The waiting to start a family had been longer than what I might have wanted at times, but we were determined to get out finances to the point where I could stay at home.  So yes, this little one was greatly wanted.

At my twenty week ultrasound a young and rather naive couple who was ready to shout the news of a boy or girl to the world, instead slipped silently out of a side door with tears still streaming.   That day, the office, the doctor, the circumstances are still fresh in my mind.  It was my first real personal taste of this hard, sinfilled world.  The one that doesn't always end in happily ever after.

So here we were 13 weeks later and waiting.  Waiting to welcome a baby who wouldn't survive.  We didn't know how long we would have or how the events would play through, but we knew that God had given us this child that we had prayed for and we would love it the best we could for every second or minute that we had.

I was a scared first time mom.  Scared of needles, hospital beds, epidurals...but I was even more scared of death, funerals, and how I would ever hand over my baby.

This story...Samuel's story is one that has so many parts.  It has reached and marked our little family in so many ways.  Seven years later I still do not understand the whys, and we all still miss what I imagine to be a fresh-faced, blue eyed, reddish blondish haired 7 year, old kicking soccer balls and keeping his little sisters and brother in order. What I would give to see what he would be like today.

What I do know is that God took a naive, young couple and put them to a big test and taught them that He could be trusted.  Not just in the big things, but in the little details of hard times.  He was teaching me a deeper trust and sacrifice of my life, one that I had not yet experienced on my own.  He was preparing me, preparing us for our future. 

God's ways are not mine.  I see so little and He sees it all. 

  

I am so thankful that 7 years ago in a tiny little hospital room, God trusted me with little bit of heaven, for one short day. 

An Eli Update

Our little guy is now a few days shy of being 16 months, and I thank the Lord about 20 times a day for choosing me to be his mama.  There were so many days when I felt like God had surely forgotten me. So many days full of tears.  Many, many days when I questioned "why" us.  Days when I wondered why God had not answered my many prayers for a "healthy" baby. 

Yet, deep in my heart I knew one day we would get here.  I knew we would get to the place where life once again feels good.  I knew I would be so crazy in love with my little boy that nothing about his disability would matter...it is him that I would love.  I knew life would settle into a routine and all the busy appointments and therapies would begin to feel like normal life.  I knew that God didn't make mistakes and I knew He would direct our path.

I feel like we are there.

Eli is the sweetest little boy with such a fun little personality.  He is super friendly and blows kisses and waves to everyone.  He lights up the room wherever we go.  He has learned to give fist pumps with his daddy and gives two thumbs up and has even started yelling "Kev" from across the house.  (I have no clue where he might have learned this.)  He can hear an airplane from miles away and points to the sky and says, "air-plane."  He also has a great uh-oh and thank you. He can say Mama, Dada, Ella, Li-za, Papa, All done, stinky, I do, baby, and tries to mimic "I love you." He is trying to repeat a lot of what we say.  I love hearing his sweet little voice.

Eli loves to color and to make messes with the toilet paper.  He will climb on the dishwasher if we leave it down and loves to hide out under our foyer table.   Yesterday I asked him if he wanted a blue or green Popsicle and as clear as day he told me, "green."  He enjoyed every bit of his green Popsicle!

He loves his sisters and they love him.  Every morning they pretend that they hear him awake, so that they can run and climb in his crib with him.  He loves it.  Some mornings we are all so ready to see him that we wake him up!  He always wakes up with a smile.  He is such a blessing to our family.

At 16 months he is still crawling everywhere and is pulling to stand.  It isn't always pretty as he his feet tend to turn in too much when he pulls up, but he is learning how to take a step and fix them himself.  He is learning how to walk with his little walker.  We are trying to incorporate it into our daily life.  We walk to the table for breakfast.  We walk to the stairs when going back upstairs.  He has almost mastered climbing the stairs (with supervision) and he is learning how to walk by holding onto our hands.  This of course is an easy way to get some practice in each day.  He loves being able to stand up and play at our kiddie table and also play at our play kitchen.     It wasn't very long ago that I really didn't know if he'd ever be able to independently pull to stand and now he is like crazy!! His future as far as long term walking is still unknown, but for now he is trying so hard and making progress, and for that we are so thankful.

Eli is still shunt free at 16 months and yet we are still not out of the woods.  We will go back to the neurosurgeon at the end of November and we are praying that we will be cleared for another three months.  It will be very close and we will pray that his head growth will slow as it should. This waiting to see if he will need surgery for his head has been such a walk of faith.  The longest we have gone without seeing the neuro has been this last time which was 3 months, and during the waiting I pray and measure his head and pray and pray. 

God has been so good to us on this journey.  I am thankful that even though he knew there would be suffering for our family, he knew that we would get here.  I am so thankful for my Eli!

 

Princess Ella turns 5!

Ella turned 5 at the beginning of October.  It is hard for me to wrap my head around the fact that she is already 5!  She wanted a princess party and had discussed it frequently for about a year, and so we celebrated in true princess fashion! 

Daddy took one for the team and wore his tux.  He greeted the little princesses and served them during the party!

Crafting

Little Bubs! 

Mimi and Princess Lou Lou reading and acting out the story of Cinderella!

Princess Eliza

At age 5, Ella remains full of life.  She is a leader, strong-willed and artistic.  She loves to be in charge...heaven help us, and is making some big strides lately in obedience!  (I should know better than to write that but I am proud to see some growth there!) She loves to play and she loves being outside and going for bike rides.  Whatever Ella does she does!!    I have no doubt that Ella will do big things one day!  We pray that she will use her leadership and her big personality for the Lord!

  Ella loves taking care of others and is very compassionate.  She really is a great big sister.  Eli calls her name all day long!  Ella and Eliza spend their days playing together!  I love how they watch out for each other and love each other.   

She loves to color and create things. She is reading beginning readers and is beginning to write words.  I love watching her learn. 

I can't believe my big girl is 5!

5 Candles on her cake!

A sign of true love, when they share blowing out their candles.

My favorite picture of the party!!

The tired Mommy and Daddy, who were very happy to have birthday season over for 2012!