A New Year & A Long Post

We have been sorely neglecting our blog lately, but let's just say that January was a very LONG month!  We were dealing with lots of illness from almost everyone in the family and trying to keep up with all of Lizzie's needs at the same time.  It was an ugly month to say the least!

We left at the end of January for Lizzie's Make-A-Wish Disney cruise to the Bahamas.  I had a few hesitations in going because of how sick we had all been.  The night before we left, Lizzie started complaining of a sore throat.  I took her to instacare and they told us she had strep throat.  I was freaked out because her last bout with strep landed her in the hospital.

We gave her the penicillin shot and prayed about going on the cruise.  I felt peaceful about it and so we finished getting ready to go.  The flights were good, but poor Lizzie didn't feel well at all.  By the time we landed in Florida, I was very concerned and a bit of a nervous wreck.  I texted a few friends and family to ask them to pray for Lizzie and was again very grateful for the support system we have.  I had a great peace settle on me and I felt that things would be okay.

(Calli with her new boyfriend, Aladdin)

The cruise left the next day so I thought for sure she would be well, but it wasn't.  Lizzie spiked a 103 degree fever and was still quite ill.  We just figured it would take awhile for the shot to kill all the bacteria.  We went about our activities with Lizzie feeling very bad, but she was still a trooper! 

The next day she still had a fever so I took her to the onboard doctor and he said she needed a different antibiotic since her strep was not responding.  I have to admit that I had a bit of a meltdown because this was her cruise and she was sick - I was a little ticked off at the situation, at God, at everyone.  I just wanted her to catch a break, especially on this cruise that she had wished for. 

(Lizzie relaxing on Castaway Cay - she finally started feeling better this day)

We got her started on the new meds and we left to go out on the island of Nassau, in the Bahamas.  She couldn't walk so we got her a wheelchair and then just went on a tour of the island by car.  It was very beautiful and Lizzie's fever started to break about mid-day.  I was finally able to calm down and thank my Heavenly Father for the opportunity to be in warm weather with our family and seeing beautiful things - I also had to ask forgiveness for being so grumbly.  It had been a long month and it was time to decompress!

The next day we stopped at Castaway Cay, Disney's private island.  It was paradise.  It was warm, beautiful, sunny and relaxing.  Ben and I went snorkelling and we just played on the beach and splashed in the water.  We rented bikes and pedalled around the island - it was so incredibly fun and relaxing. 

Lizzie still didn't have energy and kept begging us to go back on the ship, but there was no way we were going to leave paradise before we absolutely had to!  Lizzie doesn't like water and has incredible fears of getting hurt so being out her element was very scary for her.  We feel that these fears are as a result of her stroke and the trauma of the last year.  She let me take her in the pool on the ship for a minute but then cried to get back on the side where she had been sitting.  Overall, the cruise was paradise and incredible, but I think it benefited the rest of us more than it did Lizzie.

(We had this great porthole in our cabin that the kids fought over constantly - we had to pry Calli's body out of the porthole seat!)

The cruise was very fun for the kids...they got to see Disney characters, eat good food, swim, play outside and just have a great time.  We are so thankful to the Make A Wish foundation and to Disney for how magical they made it for us.  Everything was taken care of, including our spending money.  It was so nice not to have to worry about any of the details.  Every day, the Make a Wish contact on the cruise had arranged to put things in our room to surprise us - fruit plates, cookie trays, stuffed animals, tickets to events and other surprises were so fun to receive every day.

My heart hurts a little when thinking about our trip.  It's hard to explain really.  It's like on one hand we are so grateful to have had the opportunity, but on the other, we wish we never would have had the experiences that led us to the Make A Wish foundation.  I know that time heals wounds, but watching Lizzie and her daily struggles keeps the wounds fresh and open sometimes.

We are grateful for a new year and we feel hopeful that this year will be a great one.  We know that Lizzie will continue to deal with illness, struggles, pain and medical issues and we accept that it's a part of our life now.  It has become normal.  Lizzie has an MRI scheduled for the first part of March and that will be very telling of whether or not she needs more surgeries, if her tumor has regrown and will answer a lot of questions we have. 

She still desperately needs Human Growth Hormone, but every time we give it to her, she gets violently ill.  This is very concerning to us and something we will have to make decisions about next month after consulting with her doctors.  We are worried that she might need another surgery to put in a shunt to get the pressure off her brain so she can tolerate growth hormone...time will tell.

My heart is touched continuously because of others' kindness.  A friend of mine was talking to me a few weeks ago and with tears in her eyes, she explained that her kids had been pretty sick with croup and she was very sad, but knew they would get better.  She told me that she had thought of us and Lizzie and couldn't imagine watching your child be sick and knowing that they wouldn't get all the way better.  Her tears and heartfelt kindness touched me and just knowing that people still think of us and pray for Lizzie is so lifting for us.

People tell us all the time that their families were so in the habit of praying for Lizzie that they continue to do so now, a year later.  It has almost been a year since our world was rocked...I really can't believe it. It's still hard to think about.  I was cleaning up high on some shelves and came across a rolled up newspaper that had been there a long time.  I opened it up and it was from February 22nd - the day of Lizzie's first surgery.  I threw that paper across the room - it was painful to think about and to reminded of.

 (Pirate Calli would crash every night because of how much we did during the days)

The other kids are doing very well.  Spencer had a ball on the cruise and loved the "Aqua Duck" the first roller coaster at sea.  He was a riot on the trip and had so much energy and excitement!  Calli was our little entertainer and told us she has a new boyfriend "Aladdin" that she met on the cruise.  She is truly a joy to be around and there is never a dull moment when Calli's around (unless she's sleeping)!

Lizzie loved her cruise, but also kept saying how much she wanted to be home.  I am glad that we have a home where she feels safe, taken care of and loved.  She loves normalcy and thrives on a routine, so home is a good place for her.

Life is good - we are blessed and we know this year will be wonderful.  We hope it's wonderful for our friends and family as well - there is always hope and always something to be grateful for.