Angel

I can't believe a year has passed

Since we said goodbye

To you, our precious Daniel James

So many questions why

We fell in love with our first sight

Of you and your beautiful face

We knew your body was broken

But your spirit was full of grace

You fought so hard to stay on Earth

To be part of our family

But the Good Lord had a bigger plan

That we just could not see

You touched so many along the way

Our hearts were blessed by you

Perhaps that was the plan of God

To teach us a thing or two

And so He chose to take you up

And leave us all down here

We'll meet with you again someday

We miss you so much, my dear

More photos of the Big Day

Diploma Glow

Aunt Sheila came to watch the celebration:)

Ruby will be missed next year:(

We celebrated at P.F. Chang's for dinner.

We will never forget Mrs. Avogardo!

Big Day

Field Trip to Ronald's House

 

 

 

When I dropped Madi off at preschool yesterday morning, the Director, Peggie Nasin, had lined up the five large canisters of pop-tabs that had been collected throughout the school year. It was a pretty amazing sight and turned out to be a pretty emotional morning for me seeing that so many families had participated, all in Daniel's memory.

After school, I picked up Madi and girlfriends Olivia, Ruby, and Lauren, and we loaded up our delivery. I asked the girls if they knew where we were going, to which one of the girls shouted, "McDonalds!"  Oh boy...I had to burst their bubbles right away, and explain more about our mission. Not only were were venturing out on a 40-minute car ride, but there wasn't going to be any food at the end of this rainbow!

I had turned the seats around in the van so they could all face each other and do what little girls do best--talk. It was pretty hilarious to hear them chatting up a storm. I wanted to chime in more than a few times, but I bit my lip and tried to just enjoy the opportunity to be that "fly on the wall". Though we had stayed at the Miami location last year, I decided that the Fort Lauderdale location would be a better choice for a carload of small, impatient girls. Thank goodness I was thinking. The girls started the ole "How much longer?" routine shortly into our ride. That was almost immediately followed up, in typical fickle-fashion, by "I'm thirsty!"  Of course, then every one of these divas-in-the-making were thirsty. I doled out their cups from their lunchboxes, but unfortunately a couple of them didn't have a drink. I promised them we would get a drink when we arrived.

The girls were very excited as we got closer and arrived at the property. They were anxious to get in the front gate as we waited to be buzzed into the courtyard. We took a minute to take some pictures with Ronald (ceramic--the real Ronald needs to be reserved months in advance) and our pop-tab collection. After our photo shoot, we went into the office and met Miss Silvana, who would be taking us on our tour.  The facility is really nice. Built in 2004, it is a very comfortable, clean and modern place where families can rest their heads while their loved ones are in medical care at the hospital next door.  We first visited a beautifully decorated playroom and media room. Of course, the girls loved these rooms the best and wasted no time running over to plop down on the sofa. We loved the "Quilt of Hope" shown in the photo, which was made by children and their families staying at the house.  One of the girls asked for a bathroom break, and the rest followed suit. Off they marched, one by one.

We went back into the courtyard, and Miss Silvana asked if anyone had questions. One of our girls coyly asks, "Um...are those stairs?" and points to a staircase.  It is so funny what intrigues little people. I am now feeling my mother's pain as she dragged me through museums while all I wanted to know about was the vending machines or the gift shop.  I was right in the middle of the same experience.  We promised the girls that we would take the beloved stairs once we were done seeing the rest of the bottom floor. The kitchen was very clean and modern. The girls went crazy opening up the cupboards to see what goodies were being stored by some of the families. We explained how the families were assigned a space for their groceries so they wouldn't have to eat at restaurants every night. They appeared to be absorbing the information...until they spotted the vending machine, and what d'ya know--they all remembered that they were thirsty.  The water was sold out, but fortunately, Miss Silvana had a private stash. I purchased two waters for the girls to share, and they made sure I was painfully precise in my rationing.

We then moved on to the patio area, which would be my area of choice. Lots of fresh air and open space with teak patio tables and chairs on a paver patio. The girls made a beeline for the play area, which had a couple of play houses. I think they would have liked to spend more time there. They played for a few minutes, and grabbed some of the rubber mulch to keep as a souvenir (it's the little things...).

We finally made our way up the stairs to view one of the guestrooms. It was interesting to the girls that the rooms do not have televisions so the families can spend time talking and decompressing in their rooms. They liked the rooms and liked that there was extra space for wheelchairs and cribs. We took the elevator back down (just because I knew that was next on their list).  Our tour had concluded and Miss Silvana asked, once again, if there were any questions.  "Um...does that other staircase go somewhere else?"

We thanked Miss Silvana for taking time to show us around and teach us about their good work, and we got back in the van to head back north and go for ice cream, as I'd promised.  It wasn't long before we were back on the highway and the girls were once again asking, "How much longer?"  Grrrr...I was having fun but this was starting to feel like Groundhog Day.  About 20 minutes into our ride, one of the girls announced that she had to go potty. My bad--I shamefully forgot to empty their bladders before we departed. Because I wasn't so familiar with this little friend's ability to hold her liquid, I decided it best to pull off the highway and head to the closest, cleanest place I knew of--Panera Bread. We walked in like a mother duck followed by four little ducklings walking at a very quick pace.  By now, they all had to go potty, so we took care of business.

We got back in the car and head up the road. "How much longer?" they chimed.  I replied, "Girls, it might be dinner time by the time we get ice cream. They all moaned and someone pleaded, "Awww, but can we still get ice cream?"  They squealed with delight with my answer. I explained that the red lights were holding us up, so they began chanting, "NO MORE RED LIGHTS! NO MORE RED LIGHTS!" The funny part was that it worked!  Two times in a row!  I pointed this out to them and their voices escalated. They chanted for five miles. It was about all I could take, so I told them their mission was complete and thanked them for getting us there quicker.

We arrived at the ice cream shop, where they collectively proceeded to the restroom a couple more times. Though there were about ten choices of ice cream, their choice was easy because they all gravitated to the first flavor, cotton candy, and they all wanted the same thing. Little followers--or more appropriately, little friends--who all just want to be alike and to be liked.

It really was a fun afternoon. Exhausting nonetheless, but fun. The girls were troopers and despite the comedic tone of my post, I do believe they understand the good work done by the Ronald McDonald House, and how collecting pop-tabs is helping their cause. I hope that these kids continue to collect pop-tabs forever. I wish we would all remember to collect pop-tabs forever--in memory of our sweet Daniel. May you rest in peace my son.

For more info, please visit:  http://rmhcsouthflorida.org/

25th Percentile!

Charlie's "well visit" to the doctor yesterday turned out to be a sick visit:( He slept very poorly the night before due to coughing, and he has been a very sticky, gooey baby. There are so many factors in play. First of all, it seems that all of his teeth have decided to come in at once. Molars are popping everywhere and he's one big pool of drool. We are also aware that it's been a very bad season of pollen here in South Florida, which is causing many allergy problems for people. Lastly, he is still facing many new germs and viruses, so he may be fighting something. No fever, but we can't rule that out.  He escaped vaccinations until next time.

Since Charlie's not walking yet, Dr. Bradford wants to consider an MRI of his head if he's not walking in another month. We are seeing such steady progress that we are really hoping that won't be necessary. That's our new motivation to get this little guy steady on his feet quickly. He's taken a few steps here and there, but he still doesn't have the confidence, and maybe the strength, to take off yet.

Now for the good news:  Charlie made the 25th percentile for weight!  He gained 2 pounds! He is now officially on the charts in the 25th percentile for both height and weight categories:)

Daddy rocks!

It's no wonder the kids adore Jimmy so much. He is the most fun person in the world!!  Always bouncing them, throwing them, thrilling them.

Yesterday afternoon, I left for an appointment and Daddy graciously accepted the dinner time duty. Daddy and Madi decided to let Charlie feed himself, and then they decided to finger paint his face with tomato sauce!  Charlie was in his glory!!!  Of course, I came home and had to end the party due to my obsessive compulsive nature. You can only imagine the mess, but Charlie never had so much fun at dinner!

 

Siblings

 

Can you tell that Madi loves to smother her brother?  She is constantly hauling him around like a rag doll against his will. We find it rather cute. Some find it rather alarming if they haven't been around the two enough to know that he's totally used to it. Charlie's not powerful enough to fight back--yet. I'm sure he will be soon though. He has started letting her know, both verbally and with hand in face, when he's had enough.

Charlie is standing on his own now for almost half a minute at a time now. We have been trying to coax him to take those first steps, but it hasn't happened yet. His confidence is almost there as is his strength, so it could be any day now.  He's really becoming quite verbal too, but no distinguishable words yet. Progress in leaps and bounds!

Back to the book

So after much thought about my "therapeutic" plan for the blog in the next couple of weeks, I decided that my energy will be better served getting my head, my heart and my hands back into Daniel's book. I am hoping that harnessing the pain we feel walking through this one year later will add some emotional substance to his story since it brings so much back.  Please stay tuned...

The Walk of Pain

Cardiac arrest. The two words that changed our lives forever one year ago.  These are painful times, so I think I will focus on embracing the goodness of God for giving us Daniel and write five things about him every day until the day he left us, which was May 30th. So, bear with me. This will be very random and scattered.  I suppose this is therapy...

I remember the day he first smiled in China and
we discovered that he had dimples:)

I remember how much he adored Yo baby yogurt drinks.
We had to keep them all at Mom and Dad's house because
he would drink them until they were all gone.

I remember his cute little butt and
the small patch of hair on his back. 

I remember the night he broke his arm and
was such a trooper at the hospital.

I remember how much he loved being thrown around
by Jimmy like a normal little boy.

Mother's Day

 

Madi made sure Mother's Day was special for me and for Bubba too. She formally invited us to a tea party at school on Friday. She was so excited for the program that she nearly burst open trying to keep the details a surprise. She managed to keep the secret though.

The kids gave a sweet performance of songs and poems dedicated to Moms and Grandmas. It was so sweet. The kleenex pretty much came out when we were seated. I find those things pretty emotional. They are just so, so precious. We were very proud of Madi and her strong singing performance. We were then seated for dessert and punch in the fellowship hall, which was decorated with the children's beautiful artwork. Madi presented me with a bag of goodies containing the most gorgeous handmade card ever and a special heart-shaped box with her sweet little graduation picture on it. She said I should put all of my precious jewelry in it, but right now all of her jewelry happens to be in it! 

On Sunday, Madi, Daddy & Charlie presented me a gift certificate for a much-needed manicure and pedicure that I will redeem over the summer. Madi was quite disappointed when she found out that I wasn't receiving my 'royal treatment' that day. She was so upset by it (literally in tears) that she decided to give me a manicure herself. And so, as I look at my left hand I see one yellow nail, one pink nail, one purple nail, one blue nail, and a green thumb!  She lost her ambition waiting for my left hand to dry, and so my right hand goes unpainted...

We had a delicious family dinner at Bubba and Grandpa's house. We are winding down for their departure tomorrow. It will be difficult here without them. We've come to rely on them so much for fun time, babysitting, and just to have around when I need an extra hand or some support.

As beautiful as Mother's Day was with my children, I couldn't help thinking about last year and my only Mother's Day with Daniel. At least I had that--Jimmy never even got to have a Father's Day with him. I wish I had more vivid memories of our day together though. Our celebration last year was so clouded with preparation for his surgery, and I'm sad for that. So, this year I celebrated with two in my presence but three in my heart.

I do vividly remember this day last year. We were saying goodbye to family and friends and heading down to Miami with Daniel. We went out to dinner that night in Miami with Grandpa, and it was like Daniel saw the world with a new set of eyes. He soaked up every minute and enjoyed every experience of seeing the intracoastal waterway with boats, birds, fish and all kinds of action.  His surgery took place one year ago tomorrow. He loved life and his enthusiasm and courage inspires us everyday.

 

Healthy Baby

Here's the little boy that's been trying to eat the cat's food. Does he look under nourished?

Charlie is doing great. We received his blood work results this week, and he was good in all departments:) That gave us a sigh of relief after the lab ordeal last Thursday. I asked Bubba to go along for the ride since Jimmy was working. Madi insisted on going and helping Charlie. Having been through this when Madi was first home, and having been through everything with Daniel, I knew this trip to the lab would be 'no picnic'.

Bubba volunteered to hold Charlie, and I gladly obliged. Madi and I stood close by to coach him and console him. He started crying the minute we walked into the lab. It was as if he knew what he was in for. He stared at his little arms as they tied rubber bands tightly around them, and his face went blank as he tried to figure out what was happening. I know the rubber bands hurt him--they hurt me for crying out loud! That's when he lost it totally. The phlebotomists found a good vein in his left arm to work with right away. Beautiful. Except the good vein stopped working halfway through the torture. They pushed the needle in a little further. Then they decided to pull it out a bit. They kept telling us to make sure he didn't move, because that might hurt him more. The blood finally started to flow again...for a minute. Then it stopped again. They adjusted the needle a few more times. All over, what seemed, very casual conversation. My Mom tried to remain cool, but I could see she was freaking out inside. We all were. At one point, Madi's head disappeared underneath my shirt.

They soon decided to pull out of the left arm and try the right. We were thankful that the right arm seemed to flow freely right away. They managed to get the four adult-sized vials they needed for all of the tests. It was a grueling ten minutes. Sure seemed like more. It's hard to imagine what was going through that little mind as he sat there helpless with no idea this was for his own good.

We went directly to IHOP afterwards since it was nearly lunch time, and Bubba was quickly forgiven over a massive bowl of grits. Bubba felt like she had a lot of making up to do. Charlie ate like a king. He napped well that day too, poor baby. Madi declared that she wished she hadn't been there. It was more difficult than she expected--than we all expected.

So, we are thankful that it's over. We are rejoicing in the news of good results, and hoping that he won't need to go back to the lab for a long time.

Competing with Cats

Charlie took to the cats from day one. He also took to their food bowls. Since Charlie likes to make a habit of "camping out" in the kitchen, we've had to make a point of removing the cat food bowls from his reach.

A couple of weeks after he came home, he moved a little too quick when I wasn't paying attention. By the time I got to him, he had already done what I feared. He had eaten some of the cat food that had already been licked by one of the cats. It makes me shudder to think about it. I tried to pry his mouth open to get it out, and the little stinker bit my finger so hard, I thought I lost it for good. Ouch.

Sometimes I catch him playing in the pantry, and he inevitably picks a can of cat food and sticks it in his mouth. I have repeatedly pointed out that there is a picture of a cat on the can, not a little boy.

We are working with him, as pictured, to clearly distinguish that the cat food is for the cats, not for him. We are also working on paying close attention to those non-verbal cues that tell us he's hungry.

I know what you're thinking--and yes, we are feeding him!