Andre Xavier's Blog, page 14

Day 264 | JUNE 01, 2022

Good evening, Friends, today is day 264 of our new and amazing life!

Today was our first day of doctor appointments! We had two assessments at UVA PT and OT, they both went very well and we are very excited to see the progress Charlie will continue to make here at UVA.

We are continuing to learn that everything takes longer to accomplish and that is ok, we just need to allow it more time.

It was great to see how Charlie impressed both of her strength, I guess her file looks a little different from what Charlie actually is

The two appointments together accounted for a little over 4 hours of consultation and today Charlie also had wound care, and that took 3.5hrs, to say that she is tired it is an understatement.

Today I am pleased to say that it was better than yesterday, and I am grateful for that. One day at a time is the best approach on this phase so far.

The one thing that I am learning is to have patience and try to have no expectations, without expectations there is no frustration, but it is so much easier said than done! But I am trying my best and today I worked.

Our baby Julien had a rough night, he is teething and he ran a fever all night and mostly of the day, poor thing, he slept a lot today, but he was able to eat, drink and had wet diapers, so he is ok. I hope he feels better soon, poor baby.

Charlie was very heartbroken to see her baby Julien not feeling too well.

Huge thanks to my mom for staying up half of the night after I was up for the first half, her help is beyond appreciated!

Tomorrow we will head to Richmond for Charlie's first Pain management appointment, this is an important step on her journey, pain is a cruel companion and Charlie has been followed by this unwanted partner since the age of 19 months old, when she was diagnosed with JRA. (Juvenile rheumatoid arthritis).

We are getting ready to start the pre-sale of our book, the date will be announced in the next 48h, stay tuned! We are beyond excited to share this incredible journey with you in a story format, this journal is a fantastic way to give updates and express my thoughts, but it is a different experience to read in an actual book format, and with no grammatical mistakes , there is a lot of details that I can’t share in here, that will be in the book, and we can’t wait to reveal it to the world! I am so grateful in advance for your support with the book pre-sale!

Tonight, Charlie read books to London, since Julien was already at sleep, and it Charlie had very emotional conversation with London, our little boy is having a hard time with this transition, and Charlie was a little heartbroken with some of the things he is upset about, like why can’t mom swim in the pool with me? He doesn’t think that it is fair!

It is very hard to explain to a 5-year-old, how life can be unfair at times, we know that very soon London will start to see a therapist, but it is hurtful to see him struggling with his emotions, it is hard for me and Charlie to see the hurt our boys are going through, but we also know that this pain and suffering will make them strong and wise, they may not realize now, but we have so much to be grateful for!

Charlie is alive! That alone is a reason for us to rejoice! Thank you, God, for the incredible miracle gifted to us!

Please pray for our family, we continue to need God’s grace and your prayers and support!

May God Bless You!

André

Day 263 | MAY 31, 2022

Good evening, Friends, today is day 263 of our new and amazing life!

Thank you for your incredible words of support and compassion towards me, you have no idea how much your words helped me, and I am so grateful!

It is amazing how so many people that don’t know me personally, are able to show so much compassion. One may say that our story inspires you, but I can also say that your words comfort us. It is a mutual exchange and I am so grateful for it!

Today was a better day, I woke up much less overwhelmed and we had a good morning, the new Au Pair fit right in with our busy schedule and the boys were out the door after breakfast for a fun day outside!

I went down to my office to work for a few hours before I dedicated my time to be with Charlie. We head out to our first OT appointment after lunch at UVA, but to our surprise we were told that the appointment is not until tomorrow! Oh no! How could this be?!

Somehow the miscommunication happened between our insurance and me, and we wasted a trip to UVA, but it was ok, we were able to reconfirm the other appointments, so we can be sure to not get confused once again.

Once we returned home, it was time for my therapy and God knows how much is needed for today's session, it absolutely made me feel better.

Charlie spends the afternoon talking with her aides and our new au pair, she is already getting them to talking with her

One of our friends and neighbors offered to take the boys for a play date, so Charlie and I could have some quiet time for dinner, and it was great to have a nice time to talk with Charlie. We had a delicious dinner brought to us by a generous friend, and we had a great time together.

Things are starting to fall in place, this week and the next one will be the time to adjust our schedules, and after that I think, we will start to feel better, off course we will have challenging days, but at the end of each day, we just have to remember how far we have come, and when we focus on today, we have so much to be thankful for!

Yes, it is overwhelming and hard, but God has given us the miracle of life and a second chance, and I know he doesn’t want us to be unhappy and sad, he wants us to be grateful and happy!

Today I choose to say Thank you! We are beyond blessed with our community!

Thank you and May God bless You!

André

Day 262 | MAY 30, 2022

Good evening, friends today is day 262 of our new and amazing life!

Today is a day to thank all of our heroes that made the ultimate sacrifice protecting our freedom!

Since today was a holiday, I guess baby Julien got the memo and he slept all night

I worked up some rest, and I decided to make the best breakfast for Charlie!

I worked hard in making her one of her favorite omelets, onions, tomatoes and spinach all sautéed in olive oil, a 3 eggs omelet with cheese.

I also made the two boys their favorite waffles with berries for breakfast, music was playing and we had the perfect morning!

That was until, my sweet mother came down for breakfast and she accidentally dropped a gallon of sweet tea in the kitsch floor, splashing the sweet and stick liquid all over the floor, when that happened I had just seated to eat my own omelet, and totally unjustified I just lost it, I became so frustrated, and angry with the situation, not with my mom, but I became frustrated with me having to stop my breakfast to clean up the mess, I was also frustrated that I had stopped my breakfast previously to attend to London, and a second time to Julien.

And off course I upset my mother and Charlie, I was so frustrated that I didn’t see how ridiculous my behavior was, and it took me about 45 minutes in my office, running inside of my head the entire scene that had happened upstairs, and then I realized, I overreacted, and I am so ashamed and sorry for my behavior.

I went upstairs and apologized to my mother and to Charlie, my apology was nothing compared to the hurt I caused them, I truly felt ashamed!

I know that I am overwhelmed and truly fearful of this new phase, I also know that I am overreacting and that I can do better, but the real source of my shame, is my weakness in front of two of the most amazing and strong women that I know, my mother and my wife, they are so much stronger than I am, they have suffered so much more pain, and never had an episode of frustration like the one I delivered today, I am able to recognize that I am that strong, and I should be.

After the apology I was able to start my day, and I decided to work for few hours and that gave me a good distraction from my reality, we ate lunch and it was time for Charlie to start her wound care, but before that, a very good family friend stop by with a sweet gift for our family and left swiftly so Charlie would be in time for her wound care.

The good news is Charlie’s wounds in her knees and ankles are improving, but the ones in her buttocks are not, but we know those will require a skin graft in order to heal.

Around 5:30pm, I made my way to CHO airport, to pick up our new Au Pair, she is originally from Mozambique and seems to be a very good person, we are so excited to have her as part of our family, she told me that she decided to match with our family, because on her video interview with Charlie, she felt this incredible connection with her, and she is very excited to learn from Charlie.

Once home, I decided to redeem myself by making my world-famous Italian sandwich! Everyone loved it! And as we talked and laughed with the boys, I truly saw it, this is what is all about, family, love, faith!

God knows he has given me an impossible task, but he also gave me a miracle, the life of Charlie Anne, so God, please continue to give me the strength needed to continue to be there for Charlie and the boys.

I want to say thank you, to the several of you that sent me messages, worried about my well-being, I promise you that I am going to be making time for me, sooner than I wanted, but I just need to get few more things done, but rest assured, I love our new life, and no matter how hard it becomes, I will always find my way back to gratitude! Because I know how blessed we are!

Thank you and May God bless You!

André

Day 261 | MAY 29, 2022

Good evening, Friends, today is day 261 of our new and amazing life!

Sunday was normally the day I missed Charlie the most, and today was her first Sunday back at home!

I had great plans of attending mass and just maybe our favorite of all meals brunch after mass?

Well, I guess I am still a little stuck in the past, because in our new life as of yet, this has not happened yet.

This morning was a rough one, baby Julien didn’t sleep very well and woke up at 2:30am, 4:15a and ump by 6:30am, he was teething and boy he and I had a rough night.

I was able to get downstairs by 8am, just in time to prepare Charlie’s morning meds, I prepared breakfast for the boys and ate breakfast with them. Charlie was still getting her morning routine started.

Around 10:20am, we decided to take London and Julien to play outside, right in front of our house, so I went out and set up Charlie in a shaded area, brought her fan , then I got the boys covered with sunscreen, and was time for them to play and have fun, luckily for me, one of our incredible neighbors offered to keep an eye on the boys as I had to run for my weekly Sam’s, Costco runs.

It was a reality check on how much preparation is required for Charlie to just step outside in front of our house, and how I must be present for almost everything, to take care of the boys and Charlie, yes, she has an aid, but I am still her husband and she is my priority alongside with the boys.

Charlie is such a trooper, she started in her chair today from 10am until 10:30pm, no break! Let me remind you that she has open wounds on her buttocks, from graphs that didn’t take, so it is incredibly painful for her to sit down, and yet she does just in order to participate with our family.

I will be honest, we are having a challenging time to adjust, there is so much frustration and there is so much to be done, and the boys’ behavior is a new set of challenges. We are now seeing how much this tragedy has affected our children.

Yes, we are looking into counseling and therapy, there is no doubt we all will be in therapy for years to come, and that is ok, we would be naive to think that we would come out of this without any scars, Charlie has all the physical and visual scars, but the rest of the family and Charlie, are also carrying the invisible psychological scars.

I am begging God for his guidance and patience, because I am facing my biggest test, of being a father, husband, son, advocate and caregiver to my wife and family, and let me tell you what, it is not easy!

When it gets really hard, I force myself to think, look how much help we are receiving and look at the miracle you have been given, and that keeps me going, because I know most people don’t have this much help when tragedy touches them, I am also pulling strength from our love.

Yes, we knew it was going to be hard, but it is 10x Harder than I imagined, but I choose to face this challenge head on, because I know that it is so worth it, Charlie deserves me to do my best, and our boys also deserve my all.

Today the boys took their shower in mom's bathroom and they had so much fun!

After the boys went to bed, Charlie and I decided that we needed some TV time for ourselves. Just to get our minds distracted for 1 hour, we landed on a Netflix movie called The Identity, a very good mystery/ thriller. It was a good distraction for us, we enjoyed it.

Charlie was exhausted and so was I. After I gave her nighttime meds, I wrote my journal and I am heading up to bed, because tomorrow we start another blessed day at our house!

I am so grateful for Charlie’s life!

I am also grateful for all your prayers, support and generosity. Please continue to pray for our family, we need it now as much as we needed in the beginning.

Have a good night and May God Bless You!

André

Day 260 | MAY 28, 2022

Good evening, Friends, today is day 260 of our new and amazing life.

First Saturday since Charlie is home, and it was a little different, London didn’t come to my room for his morning Cartoons, he instead went to see mommy in her room:), he is her little alarm clock.

We are still learning how long it takes for Charlie to do things, and we are doing our best to time our meals together.

We had a good day today, Charlie had fun with the boys in the morning and We continued the process of organizing her room, tomorrow will be a big day for deliveries, we have a lot of items coming in for her room and bathroom, to make her and our life easier, like her pill dispenser, it is a lot to keep track of it, even with the schedule that I am so grateful for.

Since our Au Pair left on Friday, my mom and aí are caring for the boys, and boy they are a handful, I am drained after a full day of play and fun! It is so helpful to have Charlie around to help me with the boys, she always knows what to say to make everyone feel better. We have a new Au Pair arriving on Monday.

I just want to say thank you for your continued generosity with the meal train, it is amazing how quick it filled up! We are so grateful for it.

Today one of our friends dropped by for her delicious dinner and stopped by for a visit, it was a short one but it was a good one.

Today was Charlie’s first wound care at home, and she did so well, it did take the full 3 hours, but one hour her nurses and her aid did a very good Job!

This was a scary part of her coming home, she was not sure how well the wound care would go, and I am so glad that it went well and without any issues.

Baby Julien is getting more and more used to mommy in the house, he is starting to make his cute faces to Charlie.

We had dinner as a family and it is so amazing to be in each other’s presence.

Charlie and I had a deep conversation about the frustrations that we are experiencing and also, we reminded each other of how much we have to be grateful, we remembered how hard it was on the early days of ICU, and Charlie shared with me, some of her thoughts as she fought very hard to stay alive while hooked up to the ventilator, she told me that she kept her mind busy and active, and always thinking about her boys!

I know that Charlie has so much for share from her time at the ICU, and also know it will take some time until she is ready to share all that she went through during the fight for her life!

I am grateful to God for his continuous blessings, and for you friends, your prayers and support are greatly appreciated.

Please continue to pray for strength and patience, we share just starting this very difficult road of at home recovery.

Thank you and have a blessed night.

André