Saturday, March 30, 2019

Saturday, March 30, 2019

Tonight's picture was taken in April of 2003. This was during Mattie's first birthday party. Mattie did not understand all the commotion that day and several times he and I went upstairs to regroup. Peter brought Mattie to our deck to have cake with our family. Don't you love the troubled face on Mattie? It says it all. 


Quote of the day: The death of a beloved is an amputation. ~ C. S. Lewis

We drove 4.5 hours today from Raleigh, NC to Kiawah Island, SC. What I love about going from the North Carolina to South Carolina border, is the signage. It is truly catchy. Signs that count down the mileage to "South of the Border."

"South of the Border" is an attraction or destination that has been around for 50 years. It sits on the border and attracts a lot of tourists journeying through the Carolinas. This attraction was originally only a bar fifty years ago. As people in North Carolina were in dry counties, with no access to alcohol. Over time this area developed into almost like a mini-theme park with shops, arcades, restaurants, and fun activities for kids. Literally there are over 175 signs along the highway, of which I snapped photos of about 20. 

The sign above was at 25 miles, and this was 19 miles to South of the Border.

12 miles to South of the Border

7 miles until South of the Border

This was our first visit to South of the Border. Curiosity got me this time. It was a fun pit stop, and place Mattie would have loved. 

The signage to me is just nostalgic!

This is Pedro! He is so large, that cars can actually drive through his legs. Pedro is the mascot for the attraction. 

The sombrero observation tower. For two dollars, we could get tickets to ride the elevator up! I am not sure it is worth the trip, as up top there are chain link fences making views difficult to freely see. 

At the top of the tower. Peter snapped a photo of me in front of the sombrero. 

We checked into our condo. It is a pleasure walking into a clean and renovated space. I will never forget the condo we rented the last time in the Outer Banks of North Carolina. It was a total disaster. 

It's bright, spacious, and new!

The view from our balcony. After the month and a half we have had, we need this time away to regain strength. 

Friday, March 29, 2019

Friday, March 29, 2019

As we approach Mattie's birthday next week, I begin a series of photos on the blog. A series that highlights each of Mattie's 7 birthdays with us. This of course was Mattie's BIRTHday on April 4, 2002. A day I will never forget. As I was in labor for over 48 hours, and finally had to have an emergency c-section, because of a high fever and Mattie not making progress. When they pulled Mattie out of me, I heard the doctor say.... 'this is interesting.' Not exactly what you want to hear. What she was seeing was a grapefruit sized tumor on my bladder. She delivered Mattie, I got to touch his little foot first, and then he and Peter went to the nursery, while I underwent for bladder surgery. 




Quote of the day: If the people we love are stolen from us, the way to have them live on is to never stop loving them. ~ James O’Barr

My day started with receiving this beautiful gift of flowers. Georgetown University Hospital sent them to me. They sent it to wish me a good recovery and to thank me for taking the time to write four letters to the hospital. As you may recall from a previous blog posting, I had a very negative experience with the person who did a financial intake with me for kidney surgery. I posted the letter on the blog on March 14th.

However, after my surgery, I submitted three letters nominating two doctors and a nurse for SPIRIT awards. What I really love about the flowers, is the fact that there is some orange in them..... our Foundation color. 

I snapped a photo of the highway! Driving South from DC, is much easier than North. The Northeast is very congested and makes for stressful driving. The feeling is very different going South. Notice no buildings and signage along the roads. It provides for more natural beauty. 

It is about a 4.5 hour drive from DC to Raleigh, NC. Where we are staying tonight on route to South Carolina tomorrow. You can see Raleigh in the distance. 

Raleigh up close. The funny part about this is I love watching the HGTV show, Love it or List it. The majority of their house renovations are in Raleigh. After visiting Raleigh last June, I immediately recognized some of the landmarks seen on the show. 

Snapping photos while in the car!

Tonight we are having dinner at Second Empire. A restaurant located in Dodd Hinsdale House.  Its architectural style is Second Empire Victorian, a style developed in France under Napoleon III and marked by heavy ornate modification of Empire styles. The interior of the home has fourteen foot ceilings and deep bay windows.

The home was originally built for Mayor William H. Dodd on a lot given to him by his parents in 1871. The home was completed in 1879 and soon thereafter was lost by the Dodd Family due to financial reversals. In 1890, the house was purchased by Col. John W. Hinsdale. Everyday living for the Hinsdale family was formal. Assisted by a butler and a cook, every meal was served in the dining room with the good silver and china. The vestiges of southern hospitality remained in the Hinsdale house throughout its ninety-year history, always serving as a gathering place for family members and symbolizing, through its solid masonry walls, the solidarity of the Hinsdale Family. The house remained in the Hinsdale family until John, a son and the last Hinsdale, died in 1971 at the age of 92.

Thursday, March 28, 2019

Thursday, March 28, 2019

Tonight's picture was taken at Mattie's fourth birthday party. We held the party at Riverbend Park in Great Falls, VA. It was a fun party that included a walk in the woods with a naturalist, the opportunity to meet animals up close and personal (which Mattie loved), and an archaeological dig. Well a dig in a sand box, with the goal of finding plastic dinosaur toys. It was a hit of a day for Mattie and a handful of his close friends from preschool. 







Quote of the day: Remember that everyone you meet is afraid of something, loves something, and has lost something. ~ Jackson Brown Jr.


If someone would have told me how hard it would be to recover from a 40 minute surgery, I would have been perplexed. After all, Mattie's surgeries were 12-14 hours long. How he was able to function at all, post surgery is remarkable, and on top of the surgery he had cancer treatment. My surgery gives me even greater insight into just how strong and brave Mattie was at age 7!

Last night, I was unable to sleep. A wave of nausea came over me. I have been battling this since I came home from surgery. But last night, was so bad, I vomited profusely. In addition, kidney stones can produce constipation, but for me, it is off the charts. Another thing I now understand better as Mattie's medications made him so uncomfortable, but I truly did not get how debilitating constipation can be and how it can trigger chills and nausea. 

On top of not sleeping, I had to head to the hospital today for a mammogram and ultrasound. My internist said she felt a lump yesterday and naturally that sent me into panic mode. The problem with seeing our child be diagnosed with cancer, treated and die, is that the after effects on parents are huge. In many ways, every time I have to go for testing I prepare for the worst, as in the back of my mind, I fear that I too will get cancer. It makes for a challenging existence.

In any case, the mammogram waiting area was busy today. We women started talking to each other. Particularly what caught our attention was the happy and light nature of the techs working in the breast center. Frankly it was a bit over the top, especially when several of us were in the waiting room wondering whether we had cancer. I think there is a fine line between being pleasant and being inappropriately jolly given the nature of the environment you are working in. Several of us joked, as we wanted to know whether the techs thought we were invited to a party and NOT a mammogram!

I went through a long mammogram process today. Then waited for 15 minutes. After which I was called back for an ultrasound. The person performing the ultrasound was the same radiologist who did my biopsy in 2015. So I figured this was a sign that this was happening again. The radiologist is quiet and I am unable to read her. However, she asked me questions about the site and confirmed this was where I had surgery. She then let me know she saw NOTHING but scar tissue. She made my day. 

Tomorrow we are headed to Raleigh, NC, on our way to South Carolina. So next time you hear from me I will be writing from the Carolinas! A change of scenery is so needed since in one months time, I dealt with surgery and also had to rule out bladder cancer and breast cancer. 

Wednesday, March 27, 2019

Wednesday, March 27, 2019

Tonight's picture was taken in April of 2004. Mattie had just turned two years old. You maybe wondering what was on the wall? Well, I taped blank sheets of paper along with some activity sheets to the wall. I did this for the children who were coming over to celebrate Mattie's birthday. Though the party was over, I kept the wall of creation up for several days post party. Mattie enjoyed creating that much! I snapped this photo because Peter came home from work and Mattie was showing him the wall!





Quote of the day: Just living is not enough... one must have sunshine, freedom, and a little flower. ~ Hans Christian Andersen


I couldn't agree more than with tonight's quote! I am looking for my sunshine and "little flower" this week. It has been one thing after the other. All I know is in about one month's time I have had a ton of testing, seen a lot of doctors, and had several hospital visits. I thought all of this would be behind me and that I would be able to recover from last Thursday's surgery. Well that was until I had my yearly physical today. 

Tomorrow, I go for more testing. Specifically a mammogram and ultrasound. Mind you I just had a mammogram 8 months ago. But the doctor claims to feel something, so now I have something else to worry about. At this point, they really should be providing sedatives to me given the amount of anxiety all of this testing produces. To top it off, before leaving the doctor's office I got a tetanus shot. So now I can officially say that every part of me hurts. 

Tuesday, March 26, 2019

Tuesday, March 26, 2019 -- Mattie died 496 weeks ago today.

Tonight's picture was taken in April of 2005. Mattie was three years old and loving trains. Everything train. Really anything with wheels. This was a typical sight on our floors..... tracks of all kinds. Trains everywhere. Mattie did not like playing alone, so Peter or I were always included in the antics. 

Quote of the day: Almost everything will work again if you unplug it for a few minutes... including you. ~ Anne Lamott

I have lost track of how many days I have been living in pain from kidney stones. I do know it started in the beginning of February. My hope was to regain my strength this week after my surgery on Thursday. Apparently though this wasn't in the cards. 

I left our home at 10:45am to walk Sunny. We got back home around noon and I went upstairs to get something to prepare to do chores for the Foundation's Walk. As soon as I stepped into Mattie's bedroom (or my office), I felt like I was stepped into water. At first I was confused. I thought I had spilled something, but then as I began to assess the situation, I realized it wasn't a cat surprise and it wasn't an accident. We had a flood developing. The ceiling was perfectly fine, so how does water come up through the floors? This is a new one for me. Needless to say, because I am frazzled and not back to being myself, I called Peter. Peter immediately came home and I called our complex management to have them assess the issue.

Because I was gone from our home for only an hour, I was able to intervene early enough so that water could be picked up and fans and dehumidifiers set in place to dry the area. It is 10:30pm, and the equipment is still running in Mattie's room. The floor looks a bit warped but isn't buckling and hope that is a trend.

Needless to say, I had to empty out my clothes closet in Mattie's room, because the over flowing bath tub from the upstairs unit came through my closet walls. No one is living above me right now. The unit is being renovated and I have a contractor to thank for his carelessness as he was refacing a tub. 

I am glad that Peter was on the scene as he pinpointed where the leak was coming from and helped get the clean up process underway. 

All of this was stressful today and not conducive to healing. Indie was scared to see all the workmen, and hid under the bed. While Sunny was in the mix and followed all of us from room to room. 

Meanwhile, after all of this, I had the pleasure of going to Alexandria City Hall to pay for our permits... permits which are needed to host our Walk on private property. Dealing with City Hall on a good day makes me tense, but given how I have been feeling, today was not a good day. From there I ran around town to pick up items for our raffle. I will spare you the details, but suffice it to say, I really have to wonder how some companies remain in business. I arrived at one restaurant to pick up the gift certificate they were donating to Mattie Miracle, however, because the hostess wasn't there, none of the other staff had access to the certificates. So I was told to come back another time. That did not sit well with me. Then I went to another establishment, with an email in hand confirming the gift certificate being donated. This company did not seem to know their own computer system and I had to basically walk them through what was owed to me. 

Kidney stone recovery, a flood, and dealing with raffle vendors today have exhausted me beyond measure. 

Monday, March 25, 2019

Monday, March 25, 2019

Tonight's picture was taken in April of 2004. Mattie was playing on the floor before his second birthday party was about to begin. Mattie found his first year party overwhelming, but by his second birthday he was excited and eager to participate.





Quote of the day: The aim of the wise is not to secure pleasure but to avoid pain. ~ Aristotle


Aristotle was brilliant! As I have had it with pain. I am happy to say the stent came out today, and the process was not bad at all. It took only minutes and it is truly amazing how such a small and thin tube could cause so much discomfort and pain. 

See the blue tube in this photo, that is an example of the stent that was inside of me. The stent is used to keep the ureter open as it heals. In my case, I had a stone lodged in the ureter and it was causing an adema. In order to keep urine flowing post surgery, the stent is placed in to keep the tube open from the kidney to the bladder. 

I think the x-ray (not of me) shows just how long this tube is! 

What the actual stent looks like!

After the procedure, we went out to lunch. At one of Mattie's favorite restaurants. Which happens to be across the street from the doctor's office. Mattie used to love the train that ran around a track on the ceiling. 

This evening, pain seems to be back, so I called the doctor. As I wanted to make sure this is normal. He believes I am dealing with kidney spasms, which will resolve itself with time. It can't be soon enough. I am truly tired of pain!

Sunday, March 24 , 2019

Sunday, March 24, 2019

Tonight's picture was taken in April of 2003. Mattie was a year old and a live wire. Peter was trying to take a photo of us and Mattie was twisting and twirling in my arms. I remember those moments so well and the sheer energy Mattie possessed. 




Quote of the day: Your strongest muscle and worst enemy is your mind. Train it well. ~ Unknown

After the pain of yesterday, the only alternative today was that there would be improvement. I am feeling better than I was on Thursday, but I would say that the stent (which extends from my kidney down to my bladder) is not comfortable. I find it hard to walk with it, I move slower, and I tire more easily. The stent gets removed tomorrow, and I am wide awake for this procedure. So more fun to begin the week. 

We all went to visit Mattie's memorial tree today. This is the fourth tree we have planted since 2010. Each of the other trees had an issue. But with that said, two of the old trees still stand on campus. One of which is a Yellowwood tree and it stands right next to Mattie's new White Swamp Oak tree. 

This is the old Yellowwood tree. It turns out that people at school are decorating the old tree too. So today, we put donut ornaments on the old tree, as well as decorated the new tree. 

Mattie loved donuts during his cancer journey. So we thought he would approve of donut ornaments on the tree for his upcoming 17th birthday. The donuts are made out of foam, but I swear they smell like a real donut. 

This is Mattie's White Swamp Oak tree. Do you see the cupcake ornaments hanging from it? We also bought a new wind chime and attached it to the Yellowwood tree. I love the chimes because to me it makes the tree area magical and twinkling with the wind. 

At the base of each tree are spring flowers. We planted all sorts of bulbs in the Fall, and it was nice to see the crocus and daffodils today. Sprouting up to celebrate Mattie's birthday.