Sunday, November 27, 2011

Maestro Gideon

Gideon and I were trying to make a pom-pom bear, but my glue was not very cooperative today. So, we started to hum a song as we watched the little bear dance off his legs, his arms, and only one googly eye. I believe we were humming a concerto of some sort, because Gideon asked if we could listen to "BEAUTIFUL" music. I opened my iTunes, and let him click away. He nodded his head a little to The Weepies, he hummed with Mumford & Sons, but then he clicked on Vivaldi's Concerto in D Major for Lute and Strings and my boy was transfixed. Throughout the entire song, he stared at the screen smiling and letting those eyes just glow. When it was done, he whispered, "I want more of that, mommy! That was BEAUTIFUL!" I asked him why it was so beautiful and he said it was like he could "See the music." I am not kidding. He said that. He's four. And I wanted to bawl. The beauty inside of this boy just cannot be contained.

I asked him what he could see, and he said that there were dragonflies flying over a pond that was shining from the sun. I clicked on my Classical playlist and let him go to town. Every single time he clicked on a song, it didn't matter how long it was, he sat and listened to the whole thing. I wanted to hear his musings after each one, so I stopped folding clothes and watched him and waited. Sometimes I would interrupt the song and he would point to the play counter and say, "When this line is all filled up, we can talk." I promise he's the child and I'm the adult.

Two of the songs that he interpreted made me completely feel that awe again. He listened to the orchestral version of "O Mio Babbino Caro" and said it sounded like a mommy bird landing on her branch, scooting over to her nest, and waiting...waiting...waiting for her babies. Then! Then they were born and couldn't wait to fly, but mommy bird sang them to sleep again.

During Plaisir d'Amour, he closed his eyes throughout the whole thing while smiling. He said it was every mommy's song to her baby. Every mommy would want to rock her little one to it. And here I was sitting there and singing along with Elvis' "Can't Help Falling in Love With You" the whole time it played. I am so uncultured.

He played me songs that were on the ocean and a ship was in trouble during a storm, but it stopped and the ship was safe. Gideon also played me a song about a vacuum that just didn't work anymore and a phone that just couldn't ring. They ended up being best friends.

Then he told me that "Panis Angelicus" sounded like what he heard when he was "in my belly" while he laughed in there and rolled around. He also said he could "touch my heart" while he was in there to make me laugh instead of puke. Since that's what "new mommies do...they puke." Too much sweetness in one child, I TELL YOU WHAT!

We all know how Classical music fires those neurons, but my boy also LOVES it at the same time. I wonder how he'll feel about Opera? Is it too early? For now I will GLADLY go with this Classical love. What a beautiful afternoon...

Wednesday, November 23, 2011

Thankful...Right this very second.

Gideon is sleeping in his bed right now. He coughs every now and then, but he is not feverish and his golden curls in the glow of the nightlight just spiral around my heart and hold it there in the softest noose of gratefulness. Once in awhile his heart lips pucker and slop around, making his little divot of a dimple deepen. And I just stare, transfixed. Then there is his absolutely healthy big brother, Brody. His eyes are shut, but those massively long and dark eyelashes make him look like a porcelain doll. He smiles in his sleep, and I love catching him in the act. I stare at him, too. I wonder how I got to be so crazy lucky to have two boys who make my heart feel more awe than it has ever experienced just in watching them sleep. I have been blessed enough to have hiked the Alps, seen the Sistine Chapel, walked the Great Wall, and stared at art painted by the greats, but nothing tops this. Absolutely nothing.

Sometimes I am so consumed by others' issues, by hurt laid on via wet wool blanket to the soul. I waste time trying to rationalize the completely irrational, and it is a poisonous trap. Sometimes I get caught up in the to-do lists and the worries and the bills and the medicine and the lesson plans and the appointments and and and and (even commas). Why? Why do I speed through it all? I know this makes me miss what is so very glorious right this second.

I caught myself on the way to the hospital this morning. There was a great song on the radio. So great that I can't even recall what it was. I wanted to get lost in it. I wanted quiet. But Gideon was in the backseat talking about the first time he ever sank his teeth into an Arby's roast beef sandwich. I heard myself doing the mom "MMMMhmmm... That's nice, honey..." all while cranking up the dial for more volume. What was I doing? What was I doing murdering this moment? This here and now. I could easily download that song later. I was not living in the moment at all. It took twenty whole seconds to glance in the rearview mirror and see my boys back there, picture them flash-forward as teenagers, and begging them for one word in my direction. This chit chat might not be as commonplace by then (but believe me! I will try! I will bribe for a story by then. Or threaten to tell them one of my own if they don't start yapping). I am thankful for that instant of clarity. I am grateful that I was able to be mindful of what I could hear come out of Gideon. And, as always, he never disappoints in his descriptions. He went on in complete dramatic fashion about how when Busi first bought that sandwich for him, he thought the meat was thin skin of some creature whose skin you could see through. But then! Then he TRIED it and it was sooooo tasty. It was meat but thinner. The bun was buttery and it didn't even need sauce to taste good! He said all of this like he had discovered the most sought-after treasure the world has ever known. This was better than any song.

I am happy to report that Gideon's transfusion went beautifully and he had no side effects this time! THANK YOU for those prayers. As far as the bacteria in the blood goes, we are still waiting on that. No news is good news, as the nurses said today.

I say it's all good news. I have the two most precious creatures in all of the world snoozing above my head right now. No one can steal that joy.

I know this clip is an internet sensation and everyone has already seen it, but I love it. I think it's perfect for Thanksgiving because we often say thanks for the obvious blessings, but so many things are taken for granted. Or if you happen to be flying this holiday season, remember: "YOU ARE SITTING IN A CHAIR....IN THE SKY!"

Monday, November 21, 2011

Hospital Again

Gideon went to daycare a little quieter than usual. By 9:30, his daycare provider called and told me Gideon was laying on the couch with a temperature of 101 degrees. I immediately was able to get a substitute (thankfully). I took Gideon's temperature again in the car, and it was up to 102.4. We were told to once again go to the hospital.

Gideon's temperature kept going up and once he reached 103 degrees, he was allowed to take Tylenol. In the meantime, his nasal canal and throat were both swabbed. Many tests were ordered. As far as results of all of these tests go, bacteria was found in Gideon's blood. We don't know if that means that there was cross-contamination (something outside of Gideon created this bacteria after the blood was drawn) or if it is bacteria actually in Gideon's blood. Another sample was taken for closer inspection, and we will know in 2-3 days if this bacteria is something we need to contend with. Until then, I am telling myself it is cross contamination and nothing more. This is a calming strategy I have: denial. Well, denial and prayers that my denial is correct.

It was also discovered that Gideon is low in Immunoglobulin, an antibody made in our plasma that plays a crucial role in immunity. It sounds more like a Goblin who has a stuttering problem. Even though Gideon's numbers consistently look "good", this number is not one that is checked. Now that it has been discovered that the chemo is lowering this needed material, we will begin on a transfusion escapade. The Immunoglobulin is taken from blood products and Gideon will be infused on Wednesday. After that, he will regularly be scheduled for more transfusions.

Dr. Lobel said that 25% of the time this type of transfusion occurs, side effects occur. Those side effects include headache, fatigue similar to getting a Flu (which is due to antibodies interaction), or a rash caused from an allergic reaction to the product. There are also many other much more serious side effects that I refuse to type right now. Please, just pray that Gideon sticks within the 75% who have an easier time accepting this transfusion. Since the need for the antibodies outweigh the risks, Gideon will be revisiting the hospital this week for his first process. Please pray.

If you would like to help in any other way, please think about donating more blood in Gideon's name. Also, since this is a plasma situation, plasma donations would be even BETTER. Please click here if you feel moved to do something that will be a blessing to families like ours.

Thank you for all of the emails, texts, and prayers. I covet every single one of them and feel so very blessed to be surrounded by so many loving friends and family members!

Wednesday, November 16, 2011

Gideon's Fever

I am tired. I know there were many of you praying last night, so I want to make sure I update all of you!

Gideon went in for his spinal chemotherapy and Vincristine push yesterday morning. When he was waiting for sedation, he already seemed very chill. He was acting calm and quiet, but I just thought he was readying himself for relaxation. The chemo injections went without issue. As Gideon woke up in his drug-induced stupor, he was amazed to see how we all grew more eyes and mouths while he was sleeping. That boy cracks me up.

Once I brought him home, Gideon seemed to just want to veg on the couch. I blamed it on the lasting effects of the sedation medication. Then, he fell asleep. Again, I assumed the sedation was longer lasting than normal. Once he woke up, he had major stomach issues (I just edited the first description...Sometimes I picture Gideon being 14 and re-reading this blog. He would have read what I just typed and erased, looked at me and said, "MooOOOoOOOm! This is sooooo embarrassing!" So, I filtered myself ALL on my own! Be proud, my more prudent friends!). Again, I blamed the heavy dosages of chemo.

Once I picked up his new monthly supply of chemo, Gideon was fast asleep in the backseat. I started to get a little nervous, but that nervousness peaked once I picked up Brody and Gideon was burning up. Not only was he HOT, but his eyes were glazed over, he was staring into space and completely not himself. His temperature was 102.8 degrees. I was told to take him back to the hospital.

His port was re-acessed without any numbing cream. I am now keeping a tube in my purse. Poor little honey was in so much discomfort and pain, and he had to go through more. He received antibiotics and fluids via IV. Then I was shocked when I was told Gideon could have Tylenol! Tylenol! As in the NORMAL kid drug!!! He hasn't been able to use that since fever cannot be masked when one has leukemia. He just had his numbers checked, and since they are currently high enough to know his body is working normally, we were granted this normal kid permission. It has never given me more pleasure than to give him something that eases the pain and fever.

We were released from the hospital, Gideon was put on chemo restriction (no chemo last night. I hate that. I feel like I missed an opportunity to battle this beast). I was told to check his temperature every few hours and if it went above 102 again, we'd have to call the on-call oncologist and most likely be checked in. Happily, that delightful drug known as Tylenol did its job and his fever stayed below 101. I may have been thermometer happy all night.

So now Gideon is back to taking his daily chemotherapy! He is laying on my lap and we are both in our jammies. He is very tired, coughing like crazy, and has a sore throat. I will keep my eye on him incase that fever monster pops up again. I just told Gideon how tired I am and he looked into my bloodshot eyes with those sparkling blues and sang with a croaky voice, "You gotta keep your head up, Oh-oh. You can let your hair down, Yeah-eah!" He IS a light. I am not very shiny these days, so I will have this blog act as his mirror for all of you following in order to spread his light.

Sunday, November 13, 2011


It's parent-teacher conference week! I have never held conferences in this capacity as a music teacher, but now I have the chance to share with parents the way music makes their child's little face shine. There is joy in the face of a child who is engrossed in a melody. There is wonder in the face of a child who has played an instrument for the first time. It's magic, and I get to witness it every single day as a JOB. I am grateful for that. I always want to start my musings with happiness. I never want the weight of the world to rob me of what I have in the here and now, and singing a song with a chorus of boisterous and gregarious children will forever rank high on my list of "WOW" moments.

NEWS: Gideon is going in on Tuesday for spinal chemotherapy and he will be sedated with that. We will find out how he his body is coping with this heavier dosage of daily chemo, as well. In the midst of conference week, Gideon will also begin his steroids. I know it'll be a tough one, but we can make it! Please keep Gideon in your thoughts and prayers.

Speaking of prayers, I need to take this moment to THANK the amazing network of friends and family in my life. Thank you for coming around me, filling my soul, and then also reminding me that I need to stay strong for the good of my boys. Thank you for completely getting the brokenness and the anger that can so easily creep into my heart and make me only focus on life's hardships. It can so easily take control! No amount of strife is going to steal a healthy moment spent with my baby boys.

Brody and Gideon, you are my life's gift from above. As you grow up, I want you to always remember you are not alone. I want you to feel the miracle in a day. Please take the time to grieve, to be angry, to be mad…but get back up and look UP, so you can take your next step in the right direction. Please, please remember the C.S. Lewis quote that says, "An explanation of cause is not a justification by reason." That means that there are reasons, but no excuses. Blaming everyone except yourself is the fool's way to seek validation and an avoidance of taking responsibility for your own life. Please own your life. Be so proud of the way you own it, and you won't feel the need to ever try to justify yourself.

We are always learning. If I can view every challenge in my life as yet another way to mold my soul for the better, then there will be less dark and more light. Closing my eyes in anger will never help me to see the light, so I will pray to focus on that which is pure, lovely and good. All I have to do is open my eyes and it is there. And if I can't open my eyes, I have friends who will pry them open for me with a crow bar, but they happily offer me eye drops afterwards. Tough love for tough times!