Disney 2015

Back in June 2015, we went to Disney World.  The original plan was for my whole family to go, but Annie was pregnant and other various things were going on, so they decided this wasn't the best time for them.  My Dad ended up in the hospital with afib the week before our trip and it was advised for him not to go.  We were all bummed, but once we knew he would be OK, we went ahead with my sister, Allie.

I had great plans of blogging each day of our trip, but I've waited too long and all of my pictures are mixed up.  I am just going to do several posts and do the best I can!

We ended up leaving Friday right after work and drove all night.  This was not the original plan, but since the kids were asleep and we had three drivers, we thought, why not!  We got to our hotel, All Star Sports, around 8 in the morning. 

Funny story...around 5:30 or 6 we stopped to eat some breakfast at a Waffle house.  We were driving around a hotel to get to the parking and Lilah wakes up and says, is this Disney? Are we there? The hotel wasn't the best and the surroundings were nothing spectacular.  We started cracking up because we'd been pumping up Disney for so long and here she thought this run down area was Disney and she was trying not to be disappointed.  It was hilarious!

Once we were there, we were actually able to check in and they said our room would be ready soon.  We walked around the hotel a bit and were about to change in a bathroom to swim when we got a text that our room was ready!  We unpacked, Brian napped, and Allie and I headed to the pool with the kids.  We spent the evening at Downtown Disney shopping and ate at Downtown Disney which was SO good!  My friend had just told me about Earl of Sandwich a few days before and we found a coupon so it was a win all around.  Our trip was off to a good start!

*Remember these pics are out of order

 

 Lilah was part of the Lion King Show!

We took pictures of the kids' outfits each day in case we would be separated.  We would easily be able to let a worker know what they looked like that day.

My Reality

When I pictured my future, I never could have imagined or pictured it the way that it is.  Am I blessed...yes.  Do I know that it could always be worse...yes.  However, my reality is not easy and beyond stressful.  Although most people know about Gavin, they don't realize that I actually live with 3 sick people.  I am surrounded and overwhelmed.  Others tell me to "take time for myself" and I want to laugh or throw something because that is virtually impossible at this time.  Here is why: 

• Many people know that Gavin has a rare disability.  That is nothing new.  What they don't know is that we just sat through a two and a half hour long genetics appointment and found out that his diagnosis is likely changing to a syndrome even rarer than KTS.  According to the website, there are only 150 people diagnosed with it...period.  That's like 1 out of 53 million people!  It is called CLOVES Syndrome and basically is KTS plus more.  The "more" for him includes spinal involvement and we also have to start having his kidneys scanned.  He may be missing a kidney (crazy to think its possible with as many scans as the kid has had, but they've never checked for that) or develop kidney tumors.  The diagnosis hasn't been officially changed and I have to talk to his doctors to see what they want to do.  We also found out that it may be difficult for him to have children, but that's down the road, so I'm not going to stress about that just yet!  Gavin is also having pysch testing this week to see if he has ADD since focus is an issue and recently had a PT evaluation.  His growth motor skills are actually average (except throwing and catching), but he will receive therapy over the summer to build up his endurance.  Some rare good news we did get recently was that his leg length discrepancy had its first negative growth measure and we no longer have to put a lift in his shoe.  We don't have to see that doctor for 18 months which is an eternity in our world! Gavin's behavior at the doctor offices is wonderful, but his behavior for me is not.  He is very challenging right now and has a lot of anger and frustration.  Unfortunately, Lilah and I are his main targets.
• Macie...Macie...Macie...where do I even begin? Macie has been a challenge from birth.  After trying many different avenues, we finally did some psych testing.  When we got the results, it was hard to hear some of her responses.  We got three diagnosis: Disruptive Behavior Disorder, Anxiety Disorder, and ADHD.  The doctor looked at Oppositional Defiant Disorder and Bipolar Disorder but wasn't ready to go that far yet.  We've been experimenting with medicines and it's been a rough road.  She's had some good times, but she has major outbursts and rages and has a hard time controlling herself once in that state.  She is cruel to all of us, but especially me.  I took her back to the pediatrician last week and he basically told me that he could treat that anxiety and ADHD, but he couldn't treat the DBD.  She starts therapy with a psychologist in June, but I am going to ask for a referral to a psychiatrist for her.  It is beyond the expertise of our pediatrician and I need help! 
• Brian has recently been unofficially diagnosed with Bipolar Disorder.  This is one of our biggest fears come true.  Out of respect for Brian, very few people knew anything was going on until recently.  We tried to manage things on our own, but it is past that point right now.  We are working on getting medicines, doctors, and therapies worked out.  It is very difficult to process and accept this, but I am so thankful that he is getting help.

My reality is that I live with three ticking bombs that could go off at any given moment and they are most often directed at me.  My reality is that as soon as I get one bomb put back together and the wounds bandaged, it is ready to explode again.  My reality is that the people I love and care for the most use me as their punching bag.  My reality is that I don't know what my future is going to hold or how I am going to make it through each day, hour, or minute.  My reality is that I have no escape and do not get to have a bad day.  My reality is that being responsible doesn't pay and I often can't get the resources I need for my family.  My reality is I have to do and be everything my family needs all of the time.  My reality is that I feel alone most of the time.

Father Alex told me that the people who suffer the most in this life secure a place closer to God in the next life because their hearts have been stretched so much, they are able to receive more love.  I sure hope he is right!

Now that you know my reality, please don't comment on my gray hair, or weight gain, or bags and dark circles under my eyes.  Honestly, they are the least of my worries and I don't need them pointed out to me.  My reality is I'm a survivor and will some how make it through this, but if you don't have something kind or productive to say, then keep it to yourself!

How'd I Do?: March

How'd I do in March?  I survived it!  It was a tough month to say the least and we have more going on around here that is beyond my control.  So the name of the game around here is, SURVIVAL!

I did, however, update Gavin's appointment list for the year and added his Dr. Bowersox appointments.

Appointments/Procedures:
1/6 - Dr. Bowersox
1/14 -Wheelchair Fitting (Riley)
1/20 - Dr. Bowersox
2/3 - Dr. Bowersox
2/17 - Dr. Bowersox
2/22 - Dr. Walsh (Riley)
2/23 - Dr. Hon (Riley)
2/29 - Dr. Neely (Riley)
3/7 - Vascular Lesion Clinic (Riley)
3/21 - Dr. Bowersox
3/28 - PT, Dr. Neely, Dr. Loder (Riley)

I'd love to say that April will be so much better and that I'll accomplish a lot of my intentions, but that is no my reality right now.  Some of it, I'll be sharing here on my blog.  All I can say for now, is that prayers for my family would be greatly appreciated!

How'd I Do?: February

Even with the extra day, February has flown by all too quickly!  Here is an update of how I've done with my 2016 Intentions.  There are a few areas I'm really hoping to focus on in March, and the biggest one is BLOGGING with PICTURES!

1. Catch up on the blog (including Disney!)....not yet (March!)
2. Visit Grams B 2x a Month (0/24) Complete and Total FAIL:(
3. Finish Daily Dose of Knowledge: Bible with Brian We do this every night still!
4. Visit each of Brian's grandparents 2x other than holidays (0/4)
5. Complete the 12 Months of Family Fun board we gave the kids for Christmas (2/12) On Track!
6. Cross off 35 things from my 101 in 1001 list (13/35) Getting there!
7. Follow a strict budget Cracking Down!
8. Keep track of all of Gavin's Appointments and Procedures in 2016 (See Below)
9. Work on my weight loss and do something active at least 3x a week Yeah Bad...
10. Make Disney scrapbooks with the kids
11. Spend 30 minutes each day really playing with the kids
12. Get at least 8 hours of sleep each night Pretty much did this!
13. Drink at least 64oz of water every day
14. Keep up our new bed time routine (Bible stories, down time, lights out at 8)
15. Get Gavin a wheelchair (Fitting 1/14) Hopefully it will come in by April
16. Visit the Indianapolis Children's Museum 4x by November 30th (1/14, )

Appointments/Procedures:
1/14 -Wheelchair Fitting
2/22 - Dr. Walsh
2/23 - Dr. Hon
2/29 - Dr. Neely