Disney again, Expectations, Lessons Learned

I want to start out saying there are few happy & positive things in this post.  I have from day one of this blog been brutally honest with my feelings & emotions, and that never going to change.

We went to Disney World again on September 23rd. I was excited & sad right from the beginning. This trip Travis would not be joining us, he has college, and a trip wouldn't work. In hindsight   I feel it's best he couldn't based on how the trip went.
Like all our other trips we had 11 nights/12days, we were driving & I was beyond excited to be in my happy place, with my kids  spending quality time together. I should add, we only take a trip all together as a family every 3 yes, my husband works a lot and this is our chance to recharge, reconnect & be together.

We have always had a strict rule of never taking others with, it's just too hard & we have a system worked out that works for us. This time we broke that rule.
My cousin flew in from Montana, and we brought my husbands 2nd cousin with too. They both were go with the flow for planning & honestly didn't think it would be bad.

I had big expectations for this trip, we were celebrating our 20th anniversary & I had planned to have many pictures of us celebrating. I have ZERO!! I also have ZERO pictures of us with Kaden& Tessa. What do I have??? Tears, a deep profound sadness & hurt.

I was so worried & stressed before this trip, worried that both our guests enjoyed themselves, that they don't feel left out of anything. How could I have know the person not only feeling left out, but also who was being left out was ME!!!

From the moment we left, until we pulled back into the driveway I was an afterthought. I sat alone with my kids away from my husband on the bus, on rides, at most meals I was on the opposite side of the table, even walking I wasn't the one walking next to my husband, I was the one about 100 ft or more behind walking with the kids.

We have pictures that Disney took, and there is not one of my husband & I together, or together on a ride. We had buttons we wore letting people know of our celebrations at Disney. My cousin had a birthday one & a first visit. He had been once as a child, and he was celebrating his 40th birthday.  My husbands 2nd cousin had a first visit button because she hadn't been since she was a child & she is 22. We had buttons for our anniversary too.
Sadly since we didn't sit next to each other or even walk together, people were offering congratulations on the anniversary to the 2 people that were always together, my husband & his 2nd cousin. There are lots of pictures of  them enjoying rides, at dinner, I even have pictures of them riding the bus ( I wanted a picture of my daughter between them).

Our trip started out with a hiccup, on our second day, we came back to our rooms to see a huge cockroach on some clothes. After 3 hrs of hassles we were moved to a different resort to 2 rooms on different floors. We got a late start the next day with switching1 room again & packing our stuff to move. The 3rd day we were up late trying to locate our lost luggage, which cause us to sleep in again.
It became very clear my plans were going out the door when I got complaints of having to get up.
I was continually changing plans, and becoming increasingly aware I & my feelings were not a priority or even a thought. I made many attempts to sit with my husband either at meals or on rides only to be shoved to a different spot. I tried so hard to not be sad or upset, I tried to convince myself it was no big deal, but the truth was it was & I was very hurt & very sad.

On our last day in the parks the kids were sick & miserable, so I choose to let them sleep in & my cousin stayed back  at the hotel  to change his flight due to the hurricane. I told my husband to just go to the Magic Kingdom without us, we would join them shortly. It took me longer to get the authorization needed to add 2 nights to our stay due to the hurricane too.

I was getting texts saying what rides they were doing& asking when we were getting there. I kept letting him know we were trying but things were busy & it was taking a while. I then received a text that they had went ahead & did the 2 rides Kaden was looking forward to doing with his dad. My heart sank & I felt sick. Why?? Why did he not wait for us, why would he disappoint Kaden?
The answer I was given was he didn't know, but he had been told multiple times, again we weren't thought of.
My heart shattered into a million pieces when after dinner my husband, his 2nd cousin, the kids & I went back to the Magic Kingdom to ride a ride Kaden wanted too. I was TOLD they were going   ride some rides together, leaving the kids & I alone yet again. I was never asked if I wanted to go on a  ride with him.
While walking my husband was pushing the stroller, he & his 2nd cousin were a bit a head of the Kaden  & I, Kaden walked up by Dennis, and was trying to walk with him, when his 2nd cousin started walking, cutting in front of Kaden forcing Kaden to step back & not run in to her. She then walked next to my husband, shoulders nearly touching just like they did the whole trip. Kaden came back by me and said "I guess I'll just walk back here again."  Soon Dennis, the stroller & her were so far ahead we were lost in the sea of people for about 15 minutes, we couldn't even see them. Once we finally caught up, I told him we can't walk that fast, we just ate & Kaden didn't feel good.

After the kids & I rode 2 rides it was clear Tessa was done, she was so hot, tired, and was sick too. Kaden said he didn't feel well either & wanted to go back to the hotel. It was already 10:15pm, so I agreed we call it a day. It was then I received a text saying they were going to get fastpasses, when I ask why & for what I was told never mind they would just wait in line. I then told him the kids were not feeling well & we needed to go back to the hotel. My text was ignored, I could see them both in line, reading my text & ignoring it.
I took the kids to the bus & had Kaden help with Tessa, the stroller, water  bottles & backpack getting onto & off of the bus. I got kids ready for bed, gave them meds & we laid in bed to relax a bit. Imagine my surprise, anger, sadness & hurt to open the Disney App to see the went on many more rides & were having the time of there life. It was then Kaden started crying because he realized he never got to ride the 2 things he really wanted to, the 2 things his Dad & her had done without us earlier that day.

I was furious that even though the kids were sick, they continued to enjoy our family vacation.  I received a text about 2 1/2 hours after leaving that he was coming back & his phone had been in his pocket & low battery. We did briefly argue when he got back, and he admitted he did  see my text, but he didn't care.
Due to the hurricane we didn't leave on Thursday, we left Saturday. We spent those days just like the previous ones, the kids & I alone, them off together.  He did go to Disney Springs so we could go shopping, but he refused to go into the stores & wouldn't talk to Kaden on the bus, and only snipped at me & gave me looks like he hated me.  That evening Kaden & I fought the crowds to get food before the hurricane to eat for dinner & the next day. He said he
Didn't want anything, but upon returning to the room he left with her & they ate at the food court together while the kids & I sat in the room.


Friday he did take a walk around the resort, but it was not a really comfortable walk since I was trying to hold it together for the sake of the kids.
On the drive home I just wanted 5 minutes alone with him, hoping maybe a walk to the bathrooms at a rest stop, yet that would never happen. Every rest stop I'd go by myself, while they sat in the van with the kids, then they would go. I tried to go a few times when we stopped, but she would jump out & go with so I was told I could go next. A few times when we would all go I would try to wait, hoping to get a kiss, hold hands on the walk back, but it's impossible when they are attached at the shoulder. I do not know why this was the case for the whole trip, I really don't understand any of it.

I will say I was so deeply hurt & upset the night I took the kids, sick. back to the resort alone I was for the 1st time seriously considering if I wanted to stay.

I know it sounds crazy, but you have to remember these trips every 3 yrs are the ONLY time we go somewhere as a family, it's the one time the kids have his undivided attention away from work, it's a time for him & I to reconnect, have time alone without the distractions of work. The kids & I had this time taken from us, we can not get it back. We don't have the fun happy memories, we don't have the pictures, and we don't have anything to show for our 20th anniversary celebrations... no pictures, no quiet moments, not even a 5 minute walk alone.

I know we invited others along, but I never in a million years thought it would turn out like this. I am very grateful & glad my cousin came with, he helped me so much with the kids, he rode many rides with Kaden.

I will say this, I have learned we will never go in September again, and we will never travel with anyone again. If others go at the same time that's great, get your own room, make your own plans & we can maybe meet up 1-2 times for a bit.

Right now I can't even look at our photopass pictures Disney took of us & on rides it hurts way too much. I'm slowly unpacking, but cry the whole time. I honestly hurt so bad it makes me sick. What does the future hold??? I don't know, I guess time will tell.

There were a few good moments, seeing Tessa light up when she met Sofia the First, watching her giggle so had on Test Track & roller coaster. These moments bring me joy & happiness.

5 Years

Tessa turned 5 in January, and while time has flown by, there are moments that seem like a million years ago. I have many moments I regret, and some I wish I could have a do-over.

I am going to be brutally honest, because I feel many parents that have a child with a disability aren't often. I don't fault them, because often we are judged unfairly & harshly by either other parents, or by people who don't have a child with a disability.

I love Tessa just as much as my boys. I love her smile, her funny sense of humor, her tiny feet & hands, her beautiful blue eyes, with the amazing brushfield spots, her amazing zest for life, and her sweet kisses & hugs. I wouldn't change a thing about her, including  her extra chromosome.
But, I do have days I wished she didn't have to work so hard for the simple things that come so easy for her peers, that she didn't have to be frustrated when people don't understand her, when she is unable to communicate her needs & wants as easily.

There are days I hate that Tessa has Down syndrome!! There are days I hate that when trying to advocate for her, I become so overwhelmed I cry. I hate that I am not sure if what I'm doing is what is really best for her or is what she would have chosen for herself.

One thing I do know, is I can say I am trying my best, I am doing the research, I'm asking for advice from those that have been on this journey longer.

We are about to start a new chapter of her life, and while it's exciting, it's equally as terrifying too. Tessa will finally graduate from preschool next month, and she will be off to Kindergarten. It is hard to believe we are at this stage already, and yet it makes me sad to think time is only going to go much faster. Tessa has been in preschool since she was 2 1/2, including 6 weeks during the  summers, before that she had therapy every week from 6 weeks to 2 1/2 yrs. Tessa has not known a time without someone messing with her, trying to teacher her something in someway.
This summer she will have ZERO school or therapy!! She gets to be a typical 5 yr old, playing, laughing, experiencing life without a having everything being a therapy.

All too soon summer will be over, and the learning begins again. I feel good about my choice for her kindergarten. She will attend the same school the boys attended, its a small school, and it's perfect for her. She will have 2 amazing teachers, who can't wait for her to come, she has a great case manager/special ed teacher, who also is excited for her to come. Tessa will be fully included in kindergarten. She will be in a class of kindergartners and 1st graders. She will learn so much from her peers, and they will learn so much from her too. I hope she makes friends, and I hope they are patient & kind with her. She will still get Speech, OT, and PT. She will eat lunch at school, she will experience gym, music, art class. I am excited & can't wait to see her blossom during the year.
She is behind her peers, but she will be given the same work, only modified. Will she know simple addition/subtraction, how to read sight words, write her name by the end of the year? We have no clue, will her peers? Yes! But she will be given the same opportunities as her peers to learn those things, and someday, in her own time she will reach her full potential.

So when I look back on her first 5 yrs, I wish I could go back to that day in the Dr's office when I was told she had "soft marker" for DS, and tell myself it's going to be OK. I wish I could go back to the day she was born & I was alone in a dark hospital room crying myself to sleep after seeing her laying in the NICU and tell myself that it was going to be OK. I wish I could go back to my week in the hospital after having her, and tell myself to pick her up, love her, don't be scared she just wants to be loved & she is going to be OK.

I wish for the first few months I could have seen past her diagnosis, and seen how amazing she was, how much those around us embraced her & loved her.

I will never regret fighting every battle with family, friends, doctors, therapists & teachers over what I wanted for her, what she deserved. I will never regret fighting for her.

So here I am with the most amazing 5 yr old ever, and some days I can't believe I get to be her mom. I get to wake up to her sweet smile. I get to cuddle with her every night, kiss her, tell her I love her very much. I get to watch her drift off to sleep, and I know she knows happiness &  love.

There will be many more battles, many more sad, and tough moments in the future, but there will also be so many more happy moments, laughter, kisses & milestones.

I can not wait to see what the next 5 yrs hold!!