Edwardsville has a long running tradition of hosting a Halloween parade. So, instead of trick or treating on the 31st, they do two nights of trick or treating. Last night was our night, and we had a few friends over to share in the fun! We had SUCH a great time - the kids were so excited, and you should have heard the chorus of "Trick or Treat!" when a neighbor would open the door. They got great treats and almost every house had the light on in our cul-de-sac and the one that mirrors ours. Such a great time - I was as giddy as they were just watching their excitement. We are so blessed to be surrounded by great neighbors, in a perfect neighborhood, with good friends. Our girls especially had a blast having other kids to share in the fun.
And, what is a blog post without PICTURES? You know me better than that. ;)
One quick Jack-related aside - a sweet mom I know send him a pair of Hanna Andersson "zippers" - one piece pajamas that zip up the front. Guess what? THEY FIT! Perfectly. He has been crawling around, climbing the stairs, no slipping on hems, no rolled up cuffs - a dream!!! They're fantastic. (So, note to the CAST groupies - www.hannandersson.com - size 90 fits great over the cast!)
And, again - without further ado...
Wednesday, October 31, 2007
Saturday, October 27, 2007
Boo at the Zoo Spooky Saturday
Ten years, off and on, and it grows bigger every year. We arrived at the Zoo to find that the lot was full on our preferred side, but luckily I spied a line of cars leaving and patiently waited for them to re-open the lot. Just in time! We pulled into the 8th spot right by the walkway. Lucky us. And, because my mother-in-law got us a Zoo Friends membership for Christmas, parking in the lot was free!!!! (A $10 value - but there is always free parking in the park - it just depends on how far you want to walk).
Last year we missed Boo at the Zoo because Jack was too small, the weather was off, a multitude of reasons.
This year, we decided at the last minute to go. Around 9 this morning, the sun was out, the weather was mild, and it was PACKED because of it. The event is free, so you can imagine how many children are there - some without costumes, but most of them were dressed for the party. As we walked into the zoo from the Living World we were directed to our right. The line wound around (for those who live here, past the Children's Zoo, past the Insectarium, and all the way back by the Elephant Walk displays!). It was the longest line I have ever seen. However, it moved consistently and went quickly. Everyone was in good spirits, the sun was shining, we were all comfortable, and Daddy got some pretzels to pass the time.
Once we reached the hub of our "path" we realized why - it was the Target sponsored display. They were about to close - it was an hour and fifteen minutes from the car to the Target candy. Craziness. Because they were closing, the candy handlers were insanely generous - Piper walked up and one girl had two hands around this enormous ball of candies - and she dropped it all into Piper's bag! We turned the corner where two radio stations were and one insisted on taking a picture of the girls (maybe it will be on their website!). They all gave out goodies, we found Build A Bear Workshop (who is a local mom-owned company and really great to the community) - they had cute puffy sticker sheets and packs of, what else, Teddy Grahams! So cute. A hospital was giving out bags of pretzels, which we appreciated, and then we turned the corner and saw THE LINE. The event was divided up into several lines all with spooky or seasonally-appropriate names. Apparently, what we had just been through was one sponsored by four companies. The big line was sponsored by something like 9. There were people, five and size across, for as far as the eye could see. Because Target had been so generous (about to close up the hand-outs at noon, as scheduled) we were nearly full anyway, so we headed back out.
We got back into town in time for our downtown Trick-or-Treating here and drove by to see what was up. There were businesses sitting outside with bowls of candy, so we went and said hello for a bit. (We had decided a while ago that we'd skip it if they had to go IN to businesses - kids + little boutiques + costumes = no, thanks). The local precinct had officers at all the walkways helping the families across and we had a chance to chat with a few other families. It was a nice afternoon, and we're finally back home enjoying the quiet and resting our feet. What a day!
Without further ado...
Last year we missed Boo at the Zoo because Jack was too small, the weather was off, a multitude of reasons.
This year, we decided at the last minute to go. Around 9 this morning, the sun was out, the weather was mild, and it was PACKED because of it. The event is free, so you can imagine how many children are there - some without costumes, but most of them were dressed for the party. As we walked into the zoo from the Living World we were directed to our right. The line wound around (for those who live here, past the Children's Zoo, past the Insectarium, and all the way back by the Elephant Walk displays!). It was the longest line I have ever seen. However, it moved consistently and went quickly. Everyone was in good spirits, the sun was shining, we were all comfortable, and Daddy got some pretzels to pass the time.
Once we reached the hub of our "path" we realized why - it was the Target sponsored display. They were about to close - it was an hour and fifteen minutes from the car to the Target candy. Craziness. Because they were closing, the candy handlers were insanely generous - Piper walked up and one girl had two hands around this enormous ball of candies - and she dropped it all into Piper's bag! We turned the corner where two radio stations were and one insisted on taking a picture of the girls (maybe it will be on their website!). They all gave out goodies, we found Build A Bear Workshop (who is a local mom-owned company and really great to the community) - they had cute puffy sticker sheets and packs of, what else, Teddy Grahams! So cute. A hospital was giving out bags of pretzels, which we appreciated, and then we turned the corner and saw THE LINE. The event was divided up into several lines all with spooky or seasonally-appropriate names. Apparently, what we had just been through was one sponsored by four companies. The big line was sponsored by something like 9. There were people, five and size across, for as far as the eye could see. Because Target had been so generous (about to close up the hand-outs at noon, as scheduled) we were nearly full anyway, so we headed back out.
We got back into town in time for our downtown Trick-or-Treating here and drove by to see what was up. There were businesses sitting outside with bowls of candy, so we went and said hello for a bit. (We had decided a while ago that we'd skip it if they had to go IN to businesses - kids + little boutiques + costumes = no, thanks). The local precinct had officers at all the walkways helping the families across and we had a chance to chat with a few other families. It was a nice afternoon, and we're finally back home enjoying the quiet and resting our feet. What a day!
Without further ado...
Tuesday, October 23, 2007
The gift of good friends
You remember Dannielle? Her blog is over there -------------->
You know, the Wild Things quilt? Yeah, THAT Dannielle!
Well, several days ago she made an offer that sort of took a bit of time to process. She offered to have a sewing day for Jack - and get some of the local girls together to make things that might actually fit! I was talking to another dear friend last night and she mentioned something similar - so tomorrow we're going to do what we can at my house while the kids play. Maybe Jack Jack will actually let us get something done! (ha :))
The truth is - this boy has so little he can wear. I thought zip-front hoodies would work, but no dice. Since the cast comes up over the shoulders so high, the top of the zippers hit him around mid-cheek. So, if it's unzipped, they fall off the cast entirely, and if it's zipped up it ends up right around his mouth (and IN the mouth). He freaks.
And, pants - Oh, don't get me started on pants! We have several pairs of elastic-waist knit pants that just slip RIGHT off - they're all about an inch too long, too, so he slips on them. The second he has an opportunity, he pulls them off. This boy!
It just seems like he's destined to be naked! I was able to get away with a tee shirt much better late summer, but today it is very chilly - downright cold. He's in his dia de los muertos hoodie from Allison (which is a modification of a pattern - having shorter sleeves and a larger body). It's genius!
I'm thinking when T is here tomorrow, I'll see if we can hem up some of the shirts that are way too long in the sleeves at least. She has a serger. (YAY!)
What I really covet is one piece outfits, but none fit. And, to do a one piece, you really need a snap press (which I sold years ago). Unless I made some crazy zippered-leg one piece! Oh, that would be a sight. My little Michael Jackson.
We looked for pajamas for him at the store the other day and nothing would have worked at all. He needs a 3T in body, but you know how those buttons slip back open on menswear style ones? Oh, he'd have a fit with those! And the pants were ENORMOUS. John suggested I swap pants with a smaller size (tsk tsk) but I didn't. I need to see if anyone has some Hanna zippers for sale so I can try those on him. With the cuffs at the bottom and on the arms, I think they may adjust enough that they'd work - but you never know. I do know that blanket sleepers don't work at all - and I do know that Target carries zero pairs of pajamas in a 3T that have no feet (except aforementioned menswear ones that would require me to buy two sets of them - creating a $40 pair of pajamas!).
So, today I am optimistic and excited about the possibility of handmade clothes, time with friends, and comfort and quality for my boy. It sounds so simplistic - clothing that fits - but it is indeed a gift, as are my friends. (Thanks, D&T) :)
You know, the Wild Things quilt? Yeah, THAT Dannielle!
Well, several days ago she made an offer that sort of took a bit of time to process. She offered to have a sewing day for Jack - and get some of the local girls together to make things that might actually fit! I was talking to another dear friend last night and she mentioned something similar - so tomorrow we're going to do what we can at my house while the kids play. Maybe Jack Jack will actually let us get something done! (ha :))
The truth is - this boy has so little he can wear. I thought zip-front hoodies would work, but no dice. Since the cast comes up over the shoulders so high, the top of the zippers hit him around mid-cheek. So, if it's unzipped, they fall off the cast entirely, and if it's zipped up it ends up right around his mouth (and IN the mouth). He freaks.
And, pants - Oh, don't get me started on pants! We have several pairs of elastic-waist knit pants that just slip RIGHT off - they're all about an inch too long, too, so he slips on them. The second he has an opportunity, he pulls them off. This boy!
It just seems like he's destined to be naked! I was able to get away with a tee shirt much better late summer, but today it is very chilly - downright cold. He's in his dia de los muertos hoodie from Allison (which is a modification of a pattern - having shorter sleeves and a larger body). It's genius!
I'm thinking when T is here tomorrow, I'll see if we can hem up some of the shirts that are way too long in the sleeves at least. She has a serger. (YAY!)
What I really covet is one piece outfits, but none fit. And, to do a one piece, you really need a snap press (which I sold years ago). Unless I made some crazy zippered-leg one piece! Oh, that would be a sight. My little Michael Jackson.
We looked for pajamas for him at the store the other day and nothing would have worked at all. He needs a 3T in body, but you know how those buttons slip back open on menswear style ones? Oh, he'd have a fit with those! And the pants were ENORMOUS. John suggested I swap pants with a smaller size (tsk tsk) but I didn't. I need to see if anyone has some Hanna zippers for sale so I can try those on him. With the cuffs at the bottom and on the arms, I think they may adjust enough that they'd work - but you never know. I do know that blanket sleepers don't work at all - and I do know that Target carries zero pairs of pajamas in a 3T that have no feet (except aforementioned menswear ones that would require me to buy two sets of them - creating a $40 pair of pajamas!).
So, today I am optimistic and excited about the possibility of handmade clothes, time with friends, and comfort and quality for my boy. It sounds so simplistic - clothing that fits - but it is indeed a gift, as are my friends. (Thanks, D&T) :)
Monday, October 22, 2007
Boo to you and you...
For those of you familiar with the greatest Halloween party on Earth (also known as Mickey's Not So Scary Halloween Party) - that's the song they play over and over throughout the night. But, last night we were "Boo'd" - our third year of playing this little game with neighbors, where you leave a small gift on their front door with a little note and a ghost to hang on the door, so everyone in the neighborhood knows when you've been Boo'd and they can move on to an unmarked house.
The girls squealed and looked at each clicker, every straw, the candies, the trinkets and treats. It was fantastic! They had even more fun the night before delivering our Boos to the neighbor across the street and the one just two houses down. Quite stealth, those girls are!
In the process, Jack got his first taste of candy - a lollipop he ate while being held (and very closely supervised) by Daddy. He made a HUGE sloppy drooly mess of himself, so I thought I'd take that opportunity to document the answer to everyone's favorite question, "HOW do you give him a bath!?"
And, while on the subject of questions, after a long conversation with my amazing Aunt last night, I've added a list of wishes and wants to the side here. I know many people are not in a position to help, and I totally understand. We don't expect it. But, for those who want to know what they can do - there are some ideas. I know that this year has many families reeling, particularly with the holidays coming upon us. But, for what it's worth, the ideas are there. Your prayers and positive thoughts are the most appreciated of all!
The girls squealed and looked at each clicker, every straw, the candies, the trinkets and treats. It was fantastic! They had even more fun the night before delivering our Boos to the neighbor across the street and the one just two houses down. Quite stealth, those girls are!
In the process, Jack got his first taste of candy - a lollipop he ate while being held (and very closely supervised) by Daddy. He made a HUGE sloppy drooly mess of himself, so I thought I'd take that opportunity to document the answer to everyone's favorite question, "HOW do you give him a bath!?"
And, while on the subject of questions, after a long conversation with my amazing Aunt last night, I've added a list of wishes and wants to the side here. I know many people are not in a position to help, and I totally understand. We don't expect it. But, for those who want to know what they can do - there are some ideas. I know that this year has many families reeling, particularly with the holidays coming upon us. But, for what it's worth, the ideas are there. Your prayers and positive thoughts are the most appreciated of all!
Sunday, October 21, 2007
I see skies of blue and clouds of white
What a beautiful day!
It is 83° today. The sun is shining in a clear blue sky. All the windows are pulled open as far as they'll go - no air conditioning, no heat, just a perfect moderate. Through the dining room sheers, I can see the crimson leaves on the tree we inherited when we purchased this home. I saw the buds in the spring turn to tiny white flowers and now a beautiful autumn change. What luck!
The girls are enjoying one of the last warm days, and I can hear Piper squealing in the backyard, running from her sisters.
The blustery wind is pouring from our front windows to the back - so much so that I decided against lighting the beloved Yankee Candles (in "Harvest" and "Autumn Wreath"). But, there is the faint smell of apple cinnamon oatmeal muffins that I baked this afternoon for breakfasts this week.
We will finally get out the Halloween decorations in a moment - not for lack of wanting to, but for lack of motivation and time. The girls have been pestering us for weeks now, and there was always something more pressing.
Were it not for them, I'd skip it, even though Halloween is my favorite holiday of the year. It just seems like so much work with only 10 days left in the season. But, it matters. Sometimes normal matters more than the holiday itself.
So, we will put on a happy face and stick plastic spiders to our fireplace, hang the wooden witch that is as old as Skylar, and do so with a smile knowing what joy it will bring to them.
It is 83° today. The sun is shining in a clear blue sky. All the windows are pulled open as far as they'll go - no air conditioning, no heat, just a perfect moderate. Through the dining room sheers, I can see the crimson leaves on the tree we inherited when we purchased this home. I saw the buds in the spring turn to tiny white flowers and now a beautiful autumn change. What luck!
The girls are enjoying one of the last warm days, and I can hear Piper squealing in the backyard, running from her sisters.
The blustery wind is pouring from our front windows to the back - so much so that I decided against lighting the beloved Yankee Candles (in "Harvest" and "Autumn Wreath"). But, there is the faint smell of apple cinnamon oatmeal muffins that I baked this afternoon for breakfasts this week.
We will finally get out the Halloween decorations in a moment - not for lack of wanting to, but for lack of motivation and time. The girls have been pestering us for weeks now, and there was always something more pressing.
Were it not for them, I'd skip it, even though Halloween is my favorite holiday of the year. It just seems like so much work with only 10 days left in the season. But, it matters. Sometimes normal matters more than the holiday itself.
So, we will put on a happy face and stick plastic spiders to our fireplace, hang the wooden witch that is as old as Skylar, and do so with a smile knowing what joy it will bring to them.
Saturday, October 20, 2007
Angels Among Us
They are there - in the least expected moments you will find them.
We found them yesterday all around us in a moment of panic with Jack's cast. The amazing woman in Chicago who not only makes magic happen, she does so quickly! The local resident who somehow, someway was convinced that it was okay for him to trim Jack's cast. Our Shriner's, who allowed it to happen. The lady who gently rubbed his arm, reassuring him with me, as the scary-sounding cast saw hummed nearby. And, above all, my Aunt and Uncle who met us at the hospital to watch the girls so that we could attend to Jack.
The cast is beautifully trimmed today and Jack woke up 100% back to his typical self.
I am overjoyed - and to celebrate we made the trip out to the pumpkin patch and had a great afternoon. It is a very sunny, beautiful 84° here and despite some silly faces in the pictures, I'm sure you can see that they had a fantastic time.
Friday, October 19, 2007
Freaking out
Skin is raw on his pelvis
Cast is too tight and needs to be trimmed
John is at a meeting!!!!
The stupid phones are dead!
Jack is screaming when I touch his hip
Won't sleep - cries in the car - 4.5 hours from home - end of the day on Friday
COME ON!!!!!
Cast is too tight and needs to be trimmed
John is at a meeting!!!!
The stupid phones are dead!
Jack is screaming when I touch his hip
Won't sleep - cries in the car - 4.5 hours from home - end of the day on Friday
COME ON!!!!!
Thursday, October 18, 2007
Numbness subsides
Adrenaline is gone, endorphins disappear, and all that is left is the sharp pain of reality.
You go into practical mode in the hospital. We get from home to Chicago to the hospital and through each step of the process. We function on autopilot, because it is easier to do so. We are pragmatic in our approach, and almost emotionless - just going through the motions and loving on Jack whenever we can. Why? Because we cannot bear to see our child going through it and cannot possibly comprehend or process what is taking place.
Once we get back to life, back to our routine, it hits. We talked about it tonight, on the way to get groceries - the utmost in mundane acts. We ask the questions, are rational and thoughtful and practical in the hospital. We absorb the information and accept it. It is when we get home that things are allowed through that exterior shell that protects us, and Jack, from being hysterical parents flooded with raw emotion.
While we are there, it is about Jack - entirely. Tears don't help him. We advocate, we act, we participate, but we do not feel. We cannot feel.
Tonight - it hurts like hell.
You go into practical mode in the hospital. We get from home to Chicago to the hospital and through each step of the process. We function on autopilot, because it is easier to do so. We are pragmatic in our approach, and almost emotionless - just going through the motions and loving on Jack whenever we can. Why? Because we cannot bear to see our child going through it and cannot possibly comprehend or process what is taking place.
Once we get back to life, back to our routine, it hits. We talked about it tonight, on the way to get groceries - the utmost in mundane acts. We ask the questions, are rational and thoughtful and practical in the hospital. We absorb the information and accept it. It is when we get home that things are allowed through that exterior shell that protects us, and Jack, from being hysterical parents flooded with raw emotion.
While we are there, it is about Jack - entirely. Tears don't help him. We advocate, we act, we participate, but we do not feel. We cannot feel.
Tonight - it hurts like hell.
Wednesday, October 17, 2007
Cast #2
Sorry it has taken me so long to update. Sometimes when things don't go as planned, it takes me some time just to process and compose my thoughts. John said on the way home, "I feel like I should send out an email, but I don't even want to. I'm sick of delivering bad news."
That night was fairly uneventful. Immediately after the cast was cut off, he couldn't walk. He would pull to the right side, where his curve ends, and couldn't seem to balance well. He felt so small, so frail in our arms. I was afraid of hurting him. There was a little stone embedded in the top left of his chest. It was from the girls' Superman shirts that they wore to the Relay For Life this summer. I don't know if it got in his cast through his own clothes in the washing machine or just something he picked up crawling around, but John squeezed it and it came out.
We walked to radiology (down the hall) and took the x-rays, and the resident let me come into the conference room to look at the lightboard with him. I pointed out how skewed his pelvis was, because he was thrashing, and questioned whether or not the numbers would be accurate based on that. He agreed that it could change things, but wasn't sure how much. At that point his curve was back up to 70° and the RVAD had increased to 50° from 45.
We drove along in the rain toward the hotel. I hadn't printed directions from the hospital to our hotel because I didn't think we were going to have his cast cut off the day before. So, we attempted to navigate the streets of Chicago based on reverse directions and miraculously found our hotel. We decided since Jack was wiped out from the trauma of the cast saw, it was best to let him sleep as long as we could and get some dinner. Then, we headed back to the hotel to check-in that evening.
There were few parking spots left, and a long line at check-in. After getting settled into our room, went to the grocery store nearby to pick up a few things. There was an underground parking garage where guests could park through closed doors, sbut it scared me down there - very isolated, very dark - unsafe. So, John dropped us off and went to park.
When we got back to the room, we gave Jack his first bath in 9 weeks. His skin was rough, and flaking through his clothing all over us. We made the mistake of both wearing black and we looked like we had been caught in a snowstorm. The hotel bathtub was shallow, and we thought he'd be okay taking a bath by himself. I unpacked his new pirate ducky and we filled up the tub. The second his feet touched water he shrieked - he was kicking his feet, terrified, thrashing around. We pulled him back out and I got in to hold him. He still wasn't happy about it, but he let me bathe him. I gently washed off what I could with warm water, being careful not to scrub his sensitive skin. After the bath, John put lots of calendula on his skin and got him dressed for bed.
That night he wasn't supposed to eat past 1AM in for the anesthesia. Of course, that night he slept until after 2, and missed that nursing. He cried, and didn't want to go back to sleep, but John finally got him to settle down. Unfortunately, at that point we were up and couldn't fall back asleep, so we tossed and turned for another hour. At 4:45 he was up again, and so were we.
We made the drive to the hotel, astounded by how many people were out in Chicago at that hour. Ours was one of three cars in the parking lot at the hospital. We got in around 5:30 and headed to the same day surgery ward. We had to wait for a bit in the surgery waiting room because the nurse wasn't there yet (we were early), but once she arrived she got us all settled in. Kathy was great with him, totally patient and understanding, and had a great disposition.
For the next three hours we sat - and waited - and waited. Although we were guaranteed we'd go first, something came up in the middle of the night and we got bumped. At least a dozen people came in to apologize. Jack finally fell asleep in John's arms and I noticed my shirt was soaking wet. Luckily it dried before long, but I don't think I've been that miserably and painfully engorged since he was a newborn. I was sure I'd end up with a plugged duct or mastitis after that!
Around 9, we were led over to the pre-op area. We got settled in with our good buddy Ruby, who is so great with the grumpy NPO kids. She gave Jack stickers, a teddy bear, played with him, read him books - just above and beyond what we could have hoped for. Anesthesia came out and chatted with us for a bit, then we got to talk to Jack's doctor and care team. They gave Jack Versed again, and he sang songs, laughed, and played until it was time to go back. We kissed him goodbye and they wheeled him back without a tear.
We hurried downstairs, with Ruby's insistance, to get breakfast but we were too late. They were closed by then. So, Jack wasn't the only one who hadn't eaten all day. We returned to our room and waited for his doctor to come and update us. Within the hour, he came in and talked to us about the results. He had gotten Jack's curve from 70° to 25°. He put it on a bit tighter, hoping that it might help the correction hold, but he reiterated that it wasn't likely going to be the end for him. We talked about his surgical options, and asked some questions. I asked if re-casting more frequently might help, and he said he thought it might. Since at his 7 week follow-up we still saw it down to 55°, I knew that we had to get another cast on him more frequently than 9-10 weeks. But, Dr. S feels that he'll likely end up having surgery either at age 2 or 3. He thinks the curve was just too far progressed (being past 50°) when this all started. He spoke with another doctor who has been doing the early intervention for several years and consulted with him regarding Jack's care. The other doctor agreed that it may just be too far advanced to see correction through casting. We also talked about the risks of a curve this bad and the effects on his lungs and heart. All of us are in agreement that casting is his best option at this age, and the surgical methods are just not made for babies this age/size.
So, now we wait. We return in 3 weeks for x-rays to see if this cast is holding him. Either way, we're going to keep doing this for at least another year or so. Even getting it down to 65° is better, surgically, than starting at 90° (which is where Dr. S. thinks he'd be if we hadn't casted this past time). His options include Growth Rods - which are inserted by scraping the outer layer of the spine off and inserting screws and rods into the vertebrae. The problem with this is, he's so small and Dr. S. says that there's only so much of that outer layer - eventually, the vertebrae start fusing together on their own (almost like as if they were healing) and then the spine stiffens. So, they don't know how many years that would buy Jack to grow - he may end up not growing any further once he hits a certain age, if we do rods. In essence, it stunts his growth signifcantly. They also telescope in the middle for expansion, but we would have the major spinal surgery (that lasts 3-4 hours) to insert them, then every 6 months they go back in and do a 1.5 hour surgery to expand them.
OR we could consider VEPTR - which is like a growth rod, but it attaches to the ribs and the bottom of the spine. It is better because it doesn't cause the spine to stiffen, but they just don't know what it will do to the chest wall. And, in a child like Jackson, who has no other health problems and doesn't have a chest wall deformity, we don't want to put that on him - they just don't know what the longterm effects of stiffening around the ribs and chest would mean for his lifespan.
Right now, Dr. S. said there just aren't a lot of good options. He said, within 8 years or so, I think there are going to be better things on the market, but right now - there just isn't much. He added, "We have to try to fit a treatment to the curve, not fit a curve to the treatment - every child is different, every curve is different." And, he's so right. It's reassuring to know that this care is Jackson's treatment. And, we'll continue to get that for him in whatever forms we can.
That night was fairly uneventful. Immediately after the cast was cut off, he couldn't walk. He would pull to the right side, where his curve ends, and couldn't seem to balance well. He felt so small, so frail in our arms. I was afraid of hurting him. There was a little stone embedded in the top left of his chest. It was from the girls' Superman shirts that they wore to the Relay For Life this summer. I don't know if it got in his cast through his own clothes in the washing machine or just something he picked up crawling around, but John squeezed it and it came out.
We walked to radiology (down the hall) and took the x-rays, and the resident let me come into the conference room to look at the lightboard with him. I pointed out how skewed his pelvis was, because he was thrashing, and questioned whether or not the numbers would be accurate based on that. He agreed that it could change things, but wasn't sure how much. At that point his curve was back up to 70° and the RVAD had increased to 50° from 45.
We drove along in the rain toward the hotel. I hadn't printed directions from the hospital to our hotel because I didn't think we were going to have his cast cut off the day before. So, we attempted to navigate the streets of Chicago based on reverse directions and miraculously found our hotel. We decided since Jack was wiped out from the trauma of the cast saw, it was best to let him sleep as long as we could and get some dinner. Then, we headed back to the hotel to check-in that evening.
There were few parking spots left, and a long line at check-in. After getting settled into our room, went to the grocery store nearby to pick up a few things. There was an underground parking garage where guests could park through closed doors, sbut it scared me down there - very isolated, very dark - unsafe. So, John dropped us off and went to park.
When we got back to the room, we gave Jack his first bath in 9 weeks. His skin was rough, and flaking through his clothing all over us. We made the mistake of both wearing black and we looked like we had been caught in a snowstorm. The hotel bathtub was shallow, and we thought he'd be okay taking a bath by himself. I unpacked his new pirate ducky and we filled up the tub. The second his feet touched water he shrieked - he was kicking his feet, terrified, thrashing around. We pulled him back out and I got in to hold him. He still wasn't happy about it, but he let me bathe him. I gently washed off what I could with warm water, being careful not to scrub his sensitive skin. After the bath, John put lots of calendula on his skin and got him dressed for bed.
That night he wasn't supposed to eat past 1AM in for the anesthesia. Of course, that night he slept until after 2, and missed that nursing. He cried, and didn't want to go back to sleep, but John finally got him to settle down. Unfortunately, at that point we were up and couldn't fall back asleep, so we tossed and turned for another hour. At 4:45 he was up again, and so were we.
We made the drive to the hotel, astounded by how many people were out in Chicago at that hour. Ours was one of three cars in the parking lot at the hospital. We got in around 5:30 and headed to the same day surgery ward. We had to wait for a bit in the surgery waiting room because the nurse wasn't there yet (we were early), but once she arrived she got us all settled in. Kathy was great with him, totally patient and understanding, and had a great disposition.
For the next three hours we sat - and waited - and waited. Although we were guaranteed we'd go first, something came up in the middle of the night and we got bumped. At least a dozen people came in to apologize. Jack finally fell asleep in John's arms and I noticed my shirt was soaking wet. Luckily it dried before long, but I don't think I've been that miserably and painfully engorged since he was a newborn. I was sure I'd end up with a plugged duct or mastitis after that!
Around 9, we were led over to the pre-op area. We got settled in with our good buddy Ruby, who is so great with the grumpy NPO kids. She gave Jack stickers, a teddy bear, played with him, read him books - just above and beyond what we could have hoped for. Anesthesia came out and chatted with us for a bit, then we got to talk to Jack's doctor and care team. They gave Jack Versed again, and he sang songs, laughed, and played until it was time to go back. We kissed him goodbye and they wheeled him back without a tear.
We hurried downstairs, with Ruby's insistance, to get breakfast but we were too late. They were closed by then. So, Jack wasn't the only one who hadn't eaten all day. We returned to our room and waited for his doctor to come and update us. Within the hour, he came in and talked to us about the results. He had gotten Jack's curve from 70° to 25°. He put it on a bit tighter, hoping that it might help the correction hold, but he reiterated that it wasn't likely going to be the end for him. We talked about his surgical options, and asked some questions. I asked if re-casting more frequently might help, and he said he thought it might. Since at his 7 week follow-up we still saw it down to 55°, I knew that we had to get another cast on him more frequently than 9-10 weeks. But, Dr. S feels that he'll likely end up having surgery either at age 2 or 3. He thinks the curve was just too far progressed (being past 50°) when this all started. He spoke with another doctor who has been doing the early intervention for several years and consulted with him regarding Jack's care. The other doctor agreed that it may just be too far advanced to see correction through casting. We also talked about the risks of a curve this bad and the effects on his lungs and heart. All of us are in agreement that casting is his best option at this age, and the surgical methods are just not made for babies this age/size.
So, now we wait. We return in 3 weeks for x-rays to see if this cast is holding him. Either way, we're going to keep doing this for at least another year or so. Even getting it down to 65° is better, surgically, than starting at 90° (which is where Dr. S. thinks he'd be if we hadn't casted this past time). His options include Growth Rods - which are inserted by scraping the outer layer of the spine off and inserting screws and rods into the vertebrae. The problem with this is, he's so small and Dr. S. says that there's only so much of that outer layer - eventually, the vertebrae start fusing together on their own (almost like as if they were healing) and then the spine stiffens. So, they don't know how many years that would buy Jack to grow - he may end up not growing any further once he hits a certain age, if we do rods. In essence, it stunts his growth signifcantly. They also telescope in the middle for expansion, but we would have the major spinal surgery (that lasts 3-4 hours) to insert them, then every 6 months they go back in and do a 1.5 hour surgery to expand them.
OR we could consider VEPTR - which is like a growth rod, but it attaches to the ribs and the bottom of the spine. It is better because it doesn't cause the spine to stiffen, but they just don't know what it will do to the chest wall. And, in a child like Jackson, who has no other health problems and doesn't have a chest wall deformity, we don't want to put that on him - they just don't know what the longterm effects of stiffening around the ribs and chest would mean for his lifespan.
Right now, Dr. S. said there just aren't a lot of good options. He said, within 8 years or so, I think there are going to be better things on the market, but right now - there just isn't much. He added, "We have to try to fit a treatment to the curve, not fit a curve to the treatment - every child is different, every curve is different." And, he's so right. It's reassuring to know that this care is Jackson's treatment. And, we'll continue to get that for him in whatever forms we can.
Monday, October 15, 2007
Numb
After rushing up to Chicago, we met the resident at the hospital in the cast room. He cut off Jack's cast after several terrifying (to Jack) attempts with the saw. He screamed for over a half hour between the cast removal and the x-rays they insisted on.
The measurements are terrible. The day he was casted, the worst he has been, was 64° (official measurement). Today, after more than 9 weeks in the cast, the curve is 70° - it has gotten worse, based on today's measurements, after all we've gone through - all the tears - all the frustration and risks and misery.
It's late and we have an early operating room time, so I need to get off the computer and get to bed in this hotel room, but tonight I don't know what the future holds at all.
The measurements are terrible. The day he was casted, the worst he has been, was 64° (official measurement). Today, after more than 9 weeks in the cast, the curve is 70° - it has gotten worse, based on today's measurements, after all we've gone through - all the tears - all the frustration and risks and misery.
It's late and we have an early operating room time, so I need to get off the computer and get to bed in this hotel room, but tonight I don't know what the future holds at all.
Sunday, October 14, 2007
Tomorrow, Tomorrow
Today the house is a flurry of cleaning and packing as we prepare for yet another trip to Chicago.
I no longer see the trips as mini-vacations. I dread the traffic, which is gridlock everywhere you go - so unlike our suburban roads of home. There is no "let's run over to this area" in Chicago - there is "let's try to get to the hotel in less than two hours." The novelty has worn off.
As I sit and update the iPod for our hours of driving, I hear the girls upstairs. My heart flips between aching for them, knowing that we will be so far away and terrified of the what ifs in life, and relief that there will be no fights to break up, no emergency potty breaks in the middle of nowhere or five miles past the last exit. A quiet night is a mixed blessing - missing them, unfamiliarity, loneliness - and yet, peace. There is a comforting familiarity, even miles from home, even in a strange hotel room, brushing teeth, getting jammies laid out, and tucking little girls into bed. It is the monotony that is tradition, that is life. Not having them with us will be something like not having a limb. They are so much a part of us.
In the past months we've come to realize, though, that sometimes having one less limb means having three full limbs to devote to Jackson - who needs that and more during these procedures. Sometimes I wish I didn't have to be the mom in this. I wish I could collapse and have someone else take this on - the fear, the stress, the pain, the uncertainty, the - everything. But, as John said today, "It just goes to show, the only people we can count on in life is us."
I no longer see the trips as mini-vacations. I dread the traffic, which is gridlock everywhere you go - so unlike our suburban roads of home. There is no "let's run over to this area" in Chicago - there is "let's try to get to the hotel in less than two hours." The novelty has worn off.
As I sit and update the iPod for our hours of driving, I hear the girls upstairs. My heart flips between aching for them, knowing that we will be so far away and terrified of the what ifs in life, and relief that there will be no fights to break up, no emergency potty breaks in the middle of nowhere or five miles past the last exit. A quiet night is a mixed blessing - missing them, unfamiliarity, loneliness - and yet, peace. There is a comforting familiarity, even miles from home, even in a strange hotel room, brushing teeth, getting jammies laid out, and tucking little girls into bed. It is the monotony that is tradition, that is life. Not having them with us will be something like not having a limb. They are so much a part of us.
In the past months we've come to realize, though, that sometimes having one less limb means having three full limbs to devote to Jackson - who needs that and more during these procedures. Sometimes I wish I didn't have to be the mom in this. I wish I could collapse and have someone else take this on - the fear, the stress, the pain, the uncertainty, the - everything. But, as John said today, "It just goes to show, the only people we can count on in life is us."
Friday, October 12, 2007
Want to vote again?
http://evenfloadmin.donet.com/Homepage/2007BabyYoureaStar/tabid/260/photoType/ViewPhoto/PhotoID/18173/ContestID/10/Default.aspx
That's for their September baby contest. Apparently voting began on October 1st, but I'm hoping he still stands a chance ;)
That's for their September baby contest. Apparently voting began on October 1st, but I'm hoping he still stands a chance ;)
Emotions run high
I know, "What else is new?"
I was reading a message from someone on the CAST support group. Her daughter is appliance-free now. She started with a 50° curve in her spine and in that first cast they got her down to 21°. You can see her story and the progression here
http://www.infantilescoliosis.org/madisons_story.htm
A flood of emotions came over me. As I choked back tears, I couldn't figure out why - was I crying happy tears because Jack may be cured one day? Is it because Jack didn't see good results in his first cast? Is it because I hate going through this, and seeing someone else going through it breaks my heart? Because none of these sweet babies deserve to know so much pain and hurt? That little girl at Shriner's entered my mind - the one with the long, fresh, red scar running the length of her spine toddling in front of me as Jack cruised the hallways. Was this our inevitable future? What does our future hold?
Do you have any idea what it is like to be a massive control freak and have it all taken from you in one fell swoop? To not be able to take this from your child and put it upon yourself? To see them uncomfortable, even in pain, hungry, frustrated, and not be able to help?
And, then, I realize so many parents go through so much more than we do. A mom has been a very good friend to me this year whose son has/had Leukemia. I cannot FATHOM what she (and he) has gone through. My problems seem so minute in comparison. Or, I should say Jack's problems. But, you know what? Not one time has she ever uttered those words, or implied as such - she's never said, "yeah - well - at least your kid doesn't have cancer." She has been amazing, generous of spirit, comforting, loving. I am so grateful for her.
It's all perspective. Someone will always be worse off, and someone will always be better off. But, when it's my baby - the boy I dreamt of for over a decade - I cannot bear the pain. It gnaws at the pit of your stomach and makes your heart skip beats. It makes you throat hoarse from constantly choking back the tears and swallowing hard to not allow yourself to cry, to not let the kids see you cry.
I was reading a message from someone on the CAST support group. Her daughter is appliance-free now. She started with a 50° curve in her spine and in that first cast they got her down to 21°. You can see her story and the progression here
http://www.infantilescoliosis.org/madisons_story.htm
A flood of emotions came over me. As I choked back tears, I couldn't figure out why - was I crying happy tears because Jack may be cured one day? Is it because Jack didn't see good results in his first cast? Is it because I hate going through this, and seeing someone else going through it breaks my heart? Because none of these sweet babies deserve to know so much pain and hurt? That little girl at Shriner's entered my mind - the one with the long, fresh, red scar running the length of her spine toddling in front of me as Jack cruised the hallways. Was this our inevitable future? What does our future hold?
Do you have any idea what it is like to be a massive control freak and have it all taken from you in one fell swoop? To not be able to take this from your child and put it upon yourself? To see them uncomfortable, even in pain, hungry, frustrated, and not be able to help?
And, then, I realize so many parents go through so much more than we do. A mom has been a very good friend to me this year whose son has/had Leukemia. I cannot FATHOM what she (and he) has gone through. My problems seem so minute in comparison. Or, I should say Jack's problems. But, you know what? Not one time has she ever uttered those words, or implied as such - she's never said, "yeah - well - at least your kid doesn't have cancer." She has been amazing, generous of spirit, comforting, loving. I am so grateful for her.
It's all perspective. Someone will always be worse off, and someone will always be better off. But, when it's my baby - the boy I dreamt of for over a decade - I cannot bear the pain. It gnaws at the pit of your stomach and makes your heart skip beats. It makes you throat hoarse from constantly choking back the tears and swallowing hard to not allow yourself to cry, to not let the kids see you cry.
Thursday, October 11, 2007
Wednesday, October 10, 2007
Tuesday, October 09, 2007
6 days and counting
Anxiety is setting in again.
Anesthesia scares me. Last casting, his breath smelled of the awful gaseous medicine that knocks them out. Children's told us that the gas is what causes the worst side effects and they try to do it for as short a time as possible. I need to discuss that with the anesthesiologist at Shriner's. He was so miserable the 24 hours after that cast, and really even 48 hours later. After his sedated MRI, he was fine two hours later - 100% back to his old self. Maybe it's the muscle relaxers, too. They have to administer muscle relaxers so that they can more easily manipulate the spine. I need to pack my arnica.
We have to decide if we want his cast cut off on Monday or on Tuesday. On one hand, I'd like to let his skin breathe and give him a bath. On the other hand, I worry that I'll hurt him - his muscles are not very strong under the cast now and I'm afraid that it will be hard on him to not be supported like that all of a sudden. I'm also concerned about getting him out of the cast and teasing him with freedom, then going right back into it the next day. I'd like this to be as least traumatic as possible. I wonder if they can take the cast off in the OR once he's sedated. Hm. I'll have to ask that as well. We also need to find out if they can petal the edges of the cast while he's still under so that we aren't faced with the cuts on both sides of his neck this time around. Those took 8 days to improve. It was really awful.
And, of course, the reality of him not being able to eat that whole night before and the frequency with which he is nightwaking now raises the concern within me. It is particularly hard sleeping in a strange bed, in a strange room, and worrying about waking the people in the room next to us - oh - gosh - we haven't booked the room yet! How did I forget that?
My head is pounding today and I'm feeling out of sorts, so forgive the lack of cognitive flow.
Anesthesia scares me. Last casting, his breath smelled of the awful gaseous medicine that knocks them out. Children's told us that the gas is what causes the worst side effects and they try to do it for as short a time as possible. I need to discuss that with the anesthesiologist at Shriner's. He was so miserable the 24 hours after that cast, and really even 48 hours later. After his sedated MRI, he was fine two hours later - 100% back to his old self. Maybe it's the muscle relaxers, too. They have to administer muscle relaxers so that they can more easily manipulate the spine. I need to pack my arnica.
We have to decide if we want his cast cut off on Monday or on Tuesday. On one hand, I'd like to let his skin breathe and give him a bath. On the other hand, I worry that I'll hurt him - his muscles are not very strong under the cast now and I'm afraid that it will be hard on him to not be supported like that all of a sudden. I'm also concerned about getting him out of the cast and teasing him with freedom, then going right back into it the next day. I'd like this to be as least traumatic as possible. I wonder if they can take the cast off in the OR once he's sedated. Hm. I'll have to ask that as well. We also need to find out if they can petal the edges of the cast while he's still under so that we aren't faced with the cuts on both sides of his neck this time around. Those took 8 days to improve. It was really awful.
And, of course, the reality of him not being able to eat that whole night before and the frequency with which he is nightwaking now raises the concern within me. It is particularly hard sleeping in a strange bed, in a strange room, and worrying about waking the people in the room next to us - oh - gosh - we haven't booked the room yet! How did I forget that?
My head is pounding today and I'm feeling out of sorts, so forgive the lack of cognitive flow.
Sunday, October 07, 2007
A sigh of relief
After several negotiations with my persuasive husband, the local dealership ended up giving us a great deal on another van. As much as we hate having to take on a payment at this point in time, we needed a warranty (which we had run out on the old van). Those little things - the tire, the battery - they were going to keep happening. It was inevitable, with a van that had 120,000 miles. Each trip to Chicago is hard on the car - traffic at rush hour is sometimes an hour and a half to two hours just to go from the hospital to the hotel 10 miles away. The mileage is hard on the car. We knew it was inevitable that we'd need something in the next year, and with the current promotions, we were able to get a great rate and low payments with our 05 trade-in paying a good portion of this van. So, while we only have one car again, we are in much better hands on the road. We have our bumper to bumper warranty again up to 100K and roadside assistance as well.
We decided it was just a necessity, and that we couldn't risk coming out of an operating room procedure to find that our alternator was dead in the parking lot of the hospital - or having our transmission go out on the highway halfway up there. All those things weighed so heavily on our minds, and I crunched and re-crunched numbers until we were able to figure it out. Our grocery budget will go down some, but we will survive there with some creativity, and we are going to cut some extras that we don't need to make it work. Having a reliable, warrantied vehicle for 24 trips (at 550 miles each - 12,900 miles or something) - it's just peace of mind. The good news is - we switched our old homeowners over to the same company that does it on this house and saved a chunk each month right there. I no longer have a cell, but we always have John's work phone with us and I don't go out by myself. We won't be able to eat out at all, but that's okay - it's not good for us anyway and it's not like I don't know how to cook ;). And, our basic needs are being met, then some. Right now our energy needs to be focused on the best possible situation for JACK - and this was important.
So, while I don't have that gleeful "I HAVE A NEW CAR!" feeling - it's a relief. We both said this weekend that even having to take on a small payment, we're just so glad to have one LESS thing to worry about.
Ahhh.
Thought I should share something POSITIVE for a change :) Thank you all for you continued thoughts and prayers.
We decided it was just a necessity, and that we couldn't risk coming out of an operating room procedure to find that our alternator was dead in the parking lot of the hospital - or having our transmission go out on the highway halfway up there. All those things weighed so heavily on our minds, and I crunched and re-crunched numbers until we were able to figure it out. Our grocery budget will go down some, but we will survive there with some creativity, and we are going to cut some extras that we don't need to make it work. Having a reliable, warrantied vehicle for 24 trips (at 550 miles each - 12,900 miles or something) - it's just peace of mind. The good news is - we switched our old homeowners over to the same company that does it on this house and saved a chunk each month right there. I no longer have a cell, but we always have John's work phone with us and I don't go out by myself. We won't be able to eat out at all, but that's okay - it's not good for us anyway and it's not like I don't know how to cook ;). And, our basic needs are being met, then some. Right now our energy needs to be focused on the best possible situation for JACK - and this was important.
So, while I don't have that gleeful "I HAVE A NEW CAR!" feeling - it's a relief. We both said this weekend that even having to take on a small payment, we're just so glad to have one LESS thing to worry about.
Ahhh.
Thought I should share something POSITIVE for a change :) Thank you all for you continued thoughts and prayers.
Thursday, October 04, 2007
Christmas in...October?
I am an obsessive compulsive control freak planner and list maker. I admit that wholeheartedly. I check my bank account daily and reconcile every penny. I make lists of every food we have in the house and meals for the week. I have six "stickies" on my desktop right now with lists of meal databases, current budgets, to do, standing budget and theoretical "if the other house should ever sell" budget, addresses, ideas for recipe contests, doctor appointments, crafting ideas, cleaning schedules. You name it - I probably have a list for it.
So, it won't surprise you that in a season where yards are filled with leaves and pumpkins are appearing on porches, the hidden aisles of ornaments and lights way in the back of the stores have me in a panic about Christmas. I hate, "We'll see." I hate, "Maybe." I hate, "Let's play it by ear." I want to know NOW. I was the kid who snuck around and found the Christmas presents and opened them, re-wrapping them because I couldn't stand not knowing. My Mom would ship a big box of presents every year, and while my Dad was at work I'd slit the tape open just along the crease to see what surprise was in store for me.
Amidst all of this, I feel like I've had control taken from me. I feel like Jackson's cast is a wrapped gift and I can't see what is inside - I cannot predict the future of what is going to happen. I don't know if he will still need surgery. I can't plan ahead. We had these ideas of saving all of our loyalty points from staying in hotels over the next two years for a big "Out of Cast Trip." The rainbow after the storm, if you will. I got a contest form in my inbox this morning about a sweepstakes for a Disney Cruise and clicked on it, excitedly. I read the dates and realized, "No chance. Even if we DID win, we couldn't use it." Now, I realize, of course, that the chances of winning those things are slim, but I cling to those little hopes and dreams on occasion.
And, speaking of gifts, and planning ahead, I wish I could know what is going to happen for Christmas. On one hand, it could be fine. We could have a bonus and be able to sponsor a family on the board I frequent online, like we have done the past two years. We could let the kids pick names off the CASA tree at our grocery store, which they look forward to doing - shopping on Black Friday for "their" kid. I'm not concerned about what we'll get Grandparents because I know they'll understand if they just get a new picture of the kids. I'm not concerned about Godparents, they'll understand, too. But, you know who won't understand? ME!!!!
Just kidding. The kids, of course. It is SO up in the air. We've been "prepping" the kids - "Well, you know, with your behavior lately you'll be LUCKY if you get coal." But, the truth is, I don't know WHAT Christmas will bring. I don't know if we'll have another trip to Chicago for a cast before then. We very well may. I know we'll have a follow-up in four weeks, so that's nearly Thanksgiving. There's a very good chance mid to late December we'll be taking another voyage up North. So, two more trips before Christmas - it will be a challenge, Christmas aside.
Our community just got a new Borders, and, of course as part of the Grand Opening festivities they are giving away the new American Girl, Julie. My kids can't comprehend how many hundreds of children have put their names in there, and are convinced that ONE of them will win. And, to top it off, they're consoling themselves by saying things like, "That's okay - if I don't win, I'll just ask SANTA! That way you don't have to pay for it."
Ah, to be young.
So, it won't surprise you that in a season where yards are filled with leaves and pumpkins are appearing on porches, the hidden aisles of ornaments and lights way in the back of the stores have me in a panic about Christmas. I hate, "We'll see." I hate, "Maybe." I hate, "Let's play it by ear." I want to know NOW. I was the kid who snuck around and found the Christmas presents and opened them, re-wrapping them because I couldn't stand not knowing. My Mom would ship a big box of presents every year, and while my Dad was at work I'd slit the tape open just along the crease to see what surprise was in store for me.
Amidst all of this, I feel like I've had control taken from me. I feel like Jackson's cast is a wrapped gift and I can't see what is inside - I cannot predict the future of what is going to happen. I don't know if he will still need surgery. I can't plan ahead. We had these ideas of saving all of our loyalty points from staying in hotels over the next two years for a big "Out of Cast Trip." The rainbow after the storm, if you will. I got a contest form in my inbox this morning about a sweepstakes for a Disney Cruise and clicked on it, excitedly. I read the dates and realized, "No chance. Even if we DID win, we couldn't use it." Now, I realize, of course, that the chances of winning those things are slim, but I cling to those little hopes and dreams on occasion.
And, speaking of gifts, and planning ahead, I wish I could know what is going to happen for Christmas. On one hand, it could be fine. We could have a bonus and be able to sponsor a family on the board I frequent online, like we have done the past two years. We could let the kids pick names off the CASA tree at our grocery store, which they look forward to doing - shopping on Black Friday for "their" kid. I'm not concerned about what we'll get Grandparents because I know they'll understand if they just get a new picture of the kids. I'm not concerned about Godparents, they'll understand, too. But, you know who won't understand? ME!!!!
Just kidding. The kids, of course. It is SO up in the air. We've been "prepping" the kids - "Well, you know, with your behavior lately you'll be LUCKY if you get coal." But, the truth is, I don't know WHAT Christmas will bring. I don't know if we'll have another trip to Chicago for a cast before then. We very well may. I know we'll have a follow-up in four weeks, so that's nearly Thanksgiving. There's a very good chance mid to late December we'll be taking another voyage up North. So, two more trips before Christmas - it will be a challenge, Christmas aside.
Our community just got a new Borders, and, of course as part of the Grand Opening festivities they are giving away the new American Girl, Julie. My kids can't comprehend how many hundreds of children have put their names in there, and are convinced that ONE of them will win. And, to top it off, they're consoling themselves by saying things like, "That's okay - if I don't win, I'll just ask SANTA! That way you don't have to pay for it."
Ah, to be young.
Monday, October 01, 2007
Monday Morning
I am in desperate need of some retail therapy. Jack has so very little to wear (shocking, I know!) and I'm feeling bummed about the upcoming holiday season and the uncertainty of our financial state. The frequent returns, more frequent castings, have us spiraling. To top it off, our car battery died yesterday. First a new tire, then a new gold-rimmed spare (insert sarcasm), and now the battery. I don't dare ask, "What next?"
The upside of all this is that this little boy is such a gift. I typed his name today, something I do almost every day, and my heart leapt. I know that sounds contrived, but it's true. I wrote to John, "Jack has a fever," and it just happened again. Jack is such a simple word to write, but what you may not realize is that "Jack" has been in my heart and in my mind for almost a decade. I longed for a little boy, I imagined with blonde hair and blue eyes, that we would call "Jack." I longed for him for what seems like an eternity. He was my son, and was in my dreams and thoughts years before he was a reality. To have him here is surreal. Sometimes I have to step back and look at my life and I am still in awe that we have our boy. How lucky are we to have four beautiful, healthy little girls, and this sweet, sweet prince? To hear them giggle with joy, squeal with delight when he accomplishes something new. To share in our tears and heartbreak when he is hurt. He is such a blessing.
And, yes, if you caught that note earlier - he is sick - again. We are quarantining ourselves once again in preparation for casting. This is the second cold and cough he's had in the last month and it settles so deeply in his chest. I don't know if it is related to the casting or not, but he seems to get it when no one else does. We can't risk any sort of cold or respiratory illness under general anesthesia, so we'll be staying close to home. I'm sure that I will go mad from cabin fever, but he is worth every second of it.
Back to the beginning, I am in need of some retail therapy and I splurged and bought myself two new songs to listen to in the car. The monotony of the same old playlists on our ipod on the highway is enough to drive us all crazy. So, with the help of a dear friend, I found this song which I simply must share with you. Her name is Ingrid Michaelson and she is humble and cool and funky and everything indie folks should be. This tune reminds me of the poppy sounds that we were so addicted to in highschool, but with an edge of adult life. It reminds me of the newness of a relationship, with the dedication of an 11 year marriage - confirming that we are in this together, through good and bad, in sickness and in health.
And on that "note" I bid adieu.
The upside of all this is that this little boy is such a gift. I typed his name today, something I do almost every day, and my heart leapt. I know that sounds contrived, but it's true. I wrote to John, "Jack has a fever," and it just happened again. Jack is such a simple word to write, but what you may not realize is that "Jack" has been in my heart and in my mind for almost a decade. I longed for a little boy, I imagined with blonde hair and blue eyes, that we would call "Jack." I longed for him for what seems like an eternity. He was my son, and was in my dreams and thoughts years before he was a reality. To have him here is surreal. Sometimes I have to step back and look at my life and I am still in awe that we have our boy. How lucky are we to have four beautiful, healthy little girls, and this sweet, sweet prince? To hear them giggle with joy, squeal with delight when he accomplishes something new. To share in our tears and heartbreak when he is hurt. He is such a blessing.
And, yes, if you caught that note earlier - he is sick - again. We are quarantining ourselves once again in preparation for casting. This is the second cold and cough he's had in the last month and it settles so deeply in his chest. I don't know if it is related to the casting or not, but he seems to get it when no one else does. We can't risk any sort of cold or respiratory illness under general anesthesia, so we'll be staying close to home. I'm sure that I will go mad from cabin fever, but he is worth every second of it.
Back to the beginning, I am in need of some retail therapy and I splurged and bought myself two new songs to listen to in the car. The monotony of the same old playlists on our ipod on the highway is enough to drive us all crazy. So, with the help of a dear friend, I found this song which I simply must share with you. Her name is Ingrid Michaelson and she is humble and cool and funky and everything indie folks should be. This tune reminds me of the poppy sounds that we were so addicted to in highschool, but with an edge of adult life. It reminds me of the newness of a relationship, with the dedication of an 11 year marriage - confirming that we are in this together, through good and bad, in sickness and in health.
And on that "note" I bid adieu.
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