Tuesday, January 22, 2013

After my recent visit with my PCP I have decided to seek counseling in regards to my current levels of anxiety about David's health. I know mommy's worry, that's what we do best, but there are times that my fears of losing David and anxiety over him getting sick become all consuming! I have been trying to manage and process these emotions since last April, but I haven't been doing a good job of it lately. I can't watch the news, Illnesses are now a phobia of mine, & loss has become a debilitating thought that consumes me with grief.

God's not done with us yet. This is just the beginning for David and I, but in-order for me to enjoy the experience I know I'm going to need a professional's help!
I'm not sure if I even know what true love is anymore, but if I had to define it at the present time I would say True Love is... someone who will let you have all the red and pink starburst or save you all the cheesiest Doritos. I love you David!!

Sunday, January 20, 2013

I'm sitting at my yard sale with no customers rewriting my bucket list for 2013. I Can finally cross off taking David to swim with dolphins. ;)

#1 on my list... Find a way for David to meet Bruno Mars.
#2 for myself to meet Oprah,
#3 To take David to meet the San Francisco 49ers and the San Francisco Giants.

I know I'm a little ambitious, but hey if you don't aim high you'll never reach the stars!

Saturday, January 12, 2013

After feeling miserable for several days I finally got into see the doctor and the results are in... I have acute bronchitis and ear infection! This explains a lot. I've started antibiotics and I have to get a chest x-ray early next week, but hopefully all the medication they have me on will resolve my issues. I'm still very paranoid about David getting sick so I am hoping and praying that we can keep him healthy through the season.

Friday, January 4, 2013

Vacation recap….


If you are a parent, whether your child is typical or has disabilities you will understand that vacation is never really a vacation for us parents.  We are busy trying to make sure everyone is happy, everything goes as planned, that we manage to stay on budget and on time, etc….   I knew this vacation would be no different.  I knew it would require a lot of work and effort on my part, but my intentions for this vacation were to bond with David.  It was my way of expressing to him how truly special he is to me.  Goal number one was to make lasting memory.

There are a lot of things that I've been struggling with and this trip was a way for me to get away, come to terms with a few things, regroup, focus, and come back together. Despite what some may think I am human, I have my struggles and fare share of melt downs.   

I booked and paid for this trip over two years ago.  It was a promotional packaged deal where you paid a lower price for the package, but had to sit through a time share presentation.  Right before the trip I discovered that there were all these additional unexpected charges for the vacation and when it was actually time to take the trip nothing had been as promised.  I reminded myself that this trip was about memories and that David and I were both capable of making amazing memories together regardless of minor setbacks, so we attempted to laughed about things and continue on.  That was until we woke up on Christmas and found out that we could not get in to Disney World.   




How our trip began… We  flew into Florida on Christmas eve, had a nice little dinner, and then went to bed early so that we were well rested for our surprise adventure the following day.  I had planned to surprise David by waking him up on Christmas morning with a Mickey Mouse doll.  I had purchased us both Disney attire and after we were both dressed and ready we got in the car and headed to Disney World.   I didn't think that everyone else would have the same bright idea about spending their Christmas in Disney World.  As we approached the entrance we noticed that traffic was backed up for miles.  We anxiously waited approximately two hours and when we finally reached the parking entrance we were informed that the park was at maximum capacity and they were no longer letting people in.   I was devastated!!!!   I know to most people it seemed as if I was being over dramatic over something simple, but at the time it felt as if all our vacation and Christmas plans came crashing down.   I had planned this for so long, the trip had so much sentemental value and I had so much emotinally invested in the idea of the opportunity to give David this incredible surprise on Christmas morning.    I felt like I sucked as a mother.  Here I was trying to give him this spectacular Christmas gift for fighting for his life, for being the amazing spirited young man that he is and here we were thousands of miles away from our family, I had no gifts for him but our Disney tickets, and everything around us was closed.   I can laugh about it now, but in that moment my disappointment had succumb me.   For the record although, I spent all day crying over not getting into to the park David never cared! Lol


My meltdown was about far more than Disney World. That was just my excuse to finally break down, have a much needed cry, and get over it.   It was that I miss my father,  I miss what little family I have (who are out of state), I wish I had a partner and more kids to share the holidays with, and I am at a point in my life where I want to start a family that consist of more than just David and I.  Not that David is not enough, it is just that we have fought long and hard and we are both ready for more. 

After spending Christmas day hugging my son and being a big fat cry baby I got over it.   I have always said the great thing about life is everyday you wake up with a “do over”.  So we decide to pretend that Christmas was the day after instead. Things did not necessarily go as I had planned on this trip, but I know they went as God planned. Hindsight is always 2020 and after I got over not getting in to the park on Christmas day, I realize we wouldn't have wanted to deal with the Christmas crowds with a dog and a wheelchair anyways. 




Walt Disney World was amazing, but it was extremely difficult having to take David in and out of his chair and lift him onto every ride.  I didn't realize how hard it was going to be to get through crowds in the wheelchair and last time we did Disney he did not weigh as much so the lifting was more intense than I had anticipated this trip.  Lifting 95 pounds on and off every single ride we went on took a toll on me.  There were a few disappointments in the park, but nothing we could not manage.  Our absolute favorite ride is the Peter Pan.  For some reason the thought of Never Land makes me feel like I can escape to a happy place (at least for a few minutes on the ride).   When we got to the ride were told that Peter Pan was no longer wheelchair accessible and that David could not ride even if I was willing to carry him on.   I understood their reasoning and the man kindly explained that for whatever reason there had been several previous accidents/injuries that lead to the decision to no longer have that particular ride accessible, but it still sucked just the same.   Once again that darn wheelchair prevented us from another thing we enjoyed. We ended our Disney experience meeting the characters which David thoroughly enjoyed.  He still loves the Princesses!



Our next stop was our cruise to the Bahamas.   As we prepared to check in the agent looks down and says “oh we don’t have here that you have a wheelchair” I replied well we do and she goes on to tell me that since that was not mentioned when the cruse was booked there was nothing that they could do.  I explained that the trip was booked by a third party who was well aware of our situation and who assured me that the appropriate accommodations would be made and all the cruse agent could say was “sorry that did not happen”.  So since the third-party agent did not inform them that we needed a wheelchair accessible room one was not saved for us and now there were no longer any available. The lady instructed me that I would just have to simply carry him in and out of the room.   Again his darn wheelchair was interfering with our life. 

My eyes began to well up with tears and I could not even speak.   Good thing because if I could have I would have probably screamed “JUST carry him, JUST lift 95lbs over my 125lb shoulder and carry him on a moving ship, JUST lift him after a day of lifting him 100 times at Disney!”  The poor agent really had no clue what I was going through.  I was physically exhausted, tired of lifting, and just overwhelmed.  I was frustrated with the wheelchair slowing us down and continuously creating obstacles for us,  and I was sick of people thinking that I could SIMPLY do anything because everything for us takes extra strength, strategy,  extra planning, extra effort, and extra work. 

Frustrated and overwhelmed, I proceed to the room and when I got to the door and realized how narrow the doorway and the room was and I just lost it.   It was apparent that I was going to have to literally carry David over my shoulder in and out of our room on a moving cruise ship.   I was already physically exhausted and all I could do was sit in the hallway and cry.   A poor passenger who witnessed my meltdown asked if there was anything she could do to help and I informed her that all I needed was a good hard cry and I would get over it. I didn't want anything to take from these moments with David and I didn't want this incredible experience to be robbed from us and so I put on my big girl panties, threw David over my shoulder, and carried him in the room.




The following day the ship ported in the Bahamas.  Again, I had to lift David out of his wheelchair, put him over my shoulder, and climb upstairs to get on the bus that was taking us to the beach and dolphin encounter.  The lifting and dealing with the wheelchair was not anything I am not use to.  It wasn't a big deal, but watching other families made me realize how complicated it really is for us to do things that are so simple for others.   Once we got to the Bahamas I decided that I wanted to take David to the beach.  I have always heard of how beautiful their beaches were and how blue the water was, but to get David there would be challenging.  In order for me to be able to take David into the same beach that we could see other kids running around on I had to abandon his wheelchairs, lift him over my shoulder, and walked almost a block in sand with him on my back.  I'm not complaining, I will happily make the sacrifices necessary so that David can have the same experiences other children have.  What scares me is that as he grows my ability to make things happen has become increasingly more difficult!



I do fear the day that David becomes too heavy for me to put him over my shoulder.   I wonder what will happen when there are more limits placed on us because of David’s disabilities. For the longest time I have made great efforts to make sure that I compensated for David’s disabilities.  I would lift, drag, pull, do whatever necessary so that he was not left out.  Now days it seems like my ability to prevent that is not as simple as it used to be when he was smaller.  I hate being left out, I hate the thought that David’s disability, wheelchair, or condition might keep us from having the life that most people take for granted  every day.  I'm not trying to be a ungrateful because I love our life,  I just hate that we are at a point in our lives that giving David (the love of my life and my only child)  the same experiences and opportunities as non-disabled children seems out of my control.



I hate being misunderstood, I hate people thinking I'm being a crybaby, or complaining when they have no idea how much I internally struggle with  before I finally break and/or have a meltdown.
Many things were accomplished on this trip.  We definitely made unforgettable memories.  David swimming and interacting with the dolphins was priceless and the highlight of our trip.  Mommy letting go of the fact that I cannot control everything and realizing that God is going to have to carry us when it is no longer physically possible for me to carry David was a realization I have needed to come to for some time.   As hectic, stressful, and physically demanding as this vacation was, it was amazing.  It was a blessing and it allowed me to come to terms with some unresolved issues in my life (both positive and negative) that I have needed to resolve in order to begin 2013 off right!



Cheers to what is in store for us!