Older son will soon be taking a walk. He will wear a gown in his school colors and parade from the holding area in the school gym across the football field. He will sit in a sea of caps and gowns for several hours as school district dignitaries are introduced, as guest speakers speak about the importance of this occasion and as the top achieving student in the group speaks. Then once again the graduates will line up and wait for their name to be called. When they hear it, they will step forward and walk across a makeshift stage and shake hands with a school administrator and return to their seat to wait for the others to have their 30 seconds of recognition.,My son asked if he had to walk. My knee jerk mom reaction was “um, yeah, you do!” I was thinking only of myself and my need to see him cross the stage and be handed a piece of paper. But as his senior year comes to an end, I am rethinking my initial response.
Today my son stood on an actual stage in a small auditorium and spoke about an engineering project he worked on with two of his classmates during his last year in the program. I listened to the rehearsal in my living room this morning and helped my son with his shirt and tie. As he left I told him I’d be right behind him and that I couldn’t wait to see the real presentation. When I entered the auditorium there was a panel of engineers, my son’s teacher, a few other students from the class, and many empty seats. Husband and I were the only parents.
As the previous presentation wrapped up, I wondered where the parents were. I realize at this age kids can drive themselves where they need to go and parents aren’t held captive anymore. But does that mean that elementary school programs deserve more parent involvement? Are graduation caps and gowns the only things that get parents to come and see their kids once they enter high school? Am I crazy for reconsidering my position on the whole graduation circus? I listened intently to the presentation I had already heard many times forcing the questioning voices to be silent. I was overwhelmed with pride, so much that some leaked out of my eyes and streaked down my cheeks. This is what it’s all about. Not sitting in a stadium waiting. I was there when he did something truly meaningful. He actually demonstrated what he learned. A walk doesn’t demonstrate that.
So, Older Son will not be participating in his high school graduation ceremony. It won’t be his only graduation ceremony. I am confident he will do great things and the walk across a stage for a handshake and a piece of paper will be more meaningful for me as his mom as a spectator because I won’t be with him all the time watching him practice his education. I’m content with his decision to spend his graduation night celebrating with just his family.
Wow!!! All I can say is Children’s Hospital of San Antonio has been amazing. The staff has taken great care of us as we have spent all day getting Younger Son ready for his open heart surgery tomorrow.We started with a long visit with one of the surgeons on Younger Son’s case and the PA. They answered every single question we had from major concerns about the procedure to the ridiculous questions about which chores Younger Son would be restricted from. The good news is he will still be able to unload the dishwasher once he goes home. The surgeon even took the time to sit next to me and hold my hand while he told me he couldn’t even begin to imagine what I must be feeling. He assured me he would do his very best. Since this is not about me, I am pleased to tell you Younger Son is in great spirits. His biggest concern is will there be an outlet within reach for his electronics.
We then got a guided tour of the hospital from the front desk to ICU and all the stops we would make in between. Younger son will be moved to ICU post-op. Blood was drawn and his nose was swabbed. He was given a special soap to wash with tonight in order to help prep his body. Then we were off to radiology for chest x-rays. We then met with the PA to go over the consent paperwork and get one last physical exam. Apparently the consent paperwork is the same for adults and minors as we had to discuss DNRs. Needless to say I was unable to keep my composure. PA reassured me that they would do everything possible to make sure Younger Son is just fine.
I have no doubt that Younger Son is in good hands. I know those hands have been prayed for by countless people. And for this I am, and will continue to be, eternally grateful.
The hospital even arranged for us to stay at a Ronald McDonald House while Younger Son is in the hospital. So, I think we are ready for tomorrow. (Or as ready as we can be for this.) It will be a long day. The procedure will be about 10 hours.
Tomorrow is the day, in an effort to show Younger Son just how many people are praying for him, supporting him, and loving him, I am asking that you wear your Batman attire and take some selfies. Post them to social media using #teamjared. Or you can post it in the comment section, email, or text me. HIs surgery is scheduled for 7:30 tomorrow morning so I will show him your pictures before and after surgery.
Yesterday we waited for what seemed like an eternity to talk with the surgeon about the upcoming surgery. He met with us and spent most of his time talking to Younger Son. He asked him what he knew about his Marfan’s Syndrome. He asked him what kind of things were bothering him about surgery. Only after their Q&A conversation did Surgeon turn his attention to Husband and me.
Rather than ask us about our questions, he outlined his experience with this particular procedure. He explained that as far as open heart surgery goes this was the easiest and best one to have done. He talked about the procedure itself and even drew us a picture. (I am blonde and pictures are helpful.) Surgeon even talked to us about the types of doctors with which he consulted prior to talking to us. We left feeling at ease, as much as could be expected anyway.
Unfortunately we left without a surgery date. Surgeons apparently don’t keep their own calendars. He told us we would get a call the next day to schedule the surgery. On the way home we discussed a very long to-do list and set a date to have things completed in the event that we would be prepping for surgery.
Today was not ordinary either. We all busied ourselves with Thanksgiving preparations rather halfheartedly. Husband and Younger Son played disc golf to pass the time. I attempted to cook and bake. I was not successful. The phone finally rang. We set the date. We marked our calendars. December 9th will consist of lab work and x-rays. December 10th is the big day.
Let me introduce you to my Younger Son. He is 14. He is funny. He is talkative. He is brave. He is sweet. He is kind. He is courageous. He is talented. He is loved. He is a fighter. His is not ordinary. Oh, yeah, he also has Marfan’s Syndrome.
Marfan’s Syndrome is a connective tissue disorder. Connective tissue does just what it says it does. It connects stuff, mainly the stuff in our bodies. It’s pretty important stuff. Younger Son doesn’t have a lot of it and that causes problems. It could cause problems with his lungs, joints, and even his eyes. But ALL of that stuff is just fine. Younger Son has trouble with the connective tissue or cartilage in his heart. Specifically where the aorta connects to the rest of the heart. (Aortic Root Dilation)
Now, this post is not written to provide a medical education or even explanation of Marfan’s Syndrome but rather to share with you where life is taking us now. Younger Son needs surgery to fix his heart. Which means open heart surgery. Let me say that again. My extraordinary 14 year old son is going to have open heart surgery. Soon. We just left a consultation appointment with one of his surgeons. (That will be another entry.)
We will celebrate Thanksgiving this week. We will have a house full of people to celebrate with – some will be related by blood, some will be the family we have chosen, some will be new friends. We will eat, laugh, and enjoy the blessings of the season. We will live in the moment thankful that God has brought us this far. We will continue to trust His plan for our lives and most especially Jared’s. We will prepare for our next adventure. I invite you to join us.
My first completed quilt top. (insert excited squeal here). There is so much I could tell you about this project, where do I begin?
I have been taking a sewing class, I believe I mentioned that a few posts back. We met over the course of five or six Mondays. We didn’t meet weekly so that we would have plenty of time for homework. Each meeting our class of 5 would set up our sewing machines in a Sunday -School classroom at Church. We would laugh, sew, cut, and encourage each other. It was a great time with ladies that wanted to learn something new. We all worked at our own pace and ooohhed and aaahhhed at the most appropriate times. Everyone learned the same pattern but we all used different fabric choices and colors. They were all beautiful and put together with love, a few tears, and some grumbling over broken thread or uncooperative bobbins. Time passed quickly on these particular Monday nights.
Our teacher, a professional quilter, was patient and kind. She would move between machines and students never missing a beat. Our questions ranged from silly to perplexing but teacher always had a smile and an answer. She was tough, too. She would remind us to iron seams in the appropriate direction and correct our improper handling of the tools. She laughed with us and encouraged us to keep going when we would throw our hands up in frustration. She stayed late without balking at the time she was missing with her own family. She truly loved the time she spent teaching us. It was evident in the celebratory cheers she would lead at each milestone. She even added an extra class to the roster when we didn’t make the progress she had hoped we would.
The fabric I used was from a collection of fabric that was gifted to me by Husband’s aunt. She was an avid seamstress who collected enormous amounts of fabric but her declining health forced her to pack it all up. My Mother-in-law hauled it from Missouri to Texas for me. Aunt had heard about my desire to learn to quilt and thought that I would be a worthy recipient for her fabric collection. I invited my quilting friend over to help me unpack the boxes. We loved on each piece of fabric as it was lifted out of its box. I had no idea what I would do with all of it, until the sewing class flyer was placed in my hand. I sorted through the piles of fabric knowing that this was the perfect project for some of the fabric I was given. I selected a neutral palette of earth tones. I even worked in a little pink. 🙂
This was no ordinary lesson learned. I can’t wait to make another one, or finish the two that have started. I am so excited about the next class, it’s going to be a Log Cabin pattern – I should start looking at fabric to select just the right patterns and colors.
Day Three began in an empty bed. Husband had to work. I let the dogs out and crawled back in bed to soak a little longer.
1. Shower – check
2. Grocery shopping – kids will not die of starvation.
3. Scarves organized – thank you Pinterest.
4. Dinner made – I love my crockpot.
5. New sweater – thanks to YouTube I learned how to sew ruffles to repurpose a sweater that never fit just right.
6. Crochet – I learned to use a new medium; fabric instead of yarn. What did I do before YouTube?
7. Sewing class – best part of the day.
I woke up early this morning. I don’t know why, I just couldn’t sleep anymore. I made my way to the chair I share with Sheldon. The windows were open from the day before, the air was cool and smelled of spring. I listened to the birds chirp and watched the day brighten. I ate English muffins slathered in butter, the heat melted the butter into the nooks and crunchy crannies of the warm bread. I tended to my virtual farm while petting my very real purring cat.
Next it was church, followed by lunch, and then a Card Club meeting. I created 30 all-occasion handmade cards in about two hours. I returned home to my pajamas, a snack of a dinner, and some more episodes of Scandal. (Not to mention a little blogging.)