Traveling with my family is ALWAYS an adventure. Sunday we decided to load up the Big Black Bus and head off for North Carolina to visit Aunt Paula Pooh. We were on the road by 6pm and we decided to drive until either 1) our eye balls fell out of our head or 2) we were ready to throw out one of the kids.
Over the next few days I will share our adventures. And they were fun...However tonight I want to share with your that Random Acts of Kindness do come back to you. Two fold.
10 days ago I was at the local grocery store to buy a few things. I was in line getting ready to purchase my items and I looked behind me and a somewhat frazzled looking dad was behind me. In his hands he held pedialyte and diapers. I instantaneously remembered the good ole days of babies with diarrhea and leaky diapers and I smiled at him and told him, "You go ahead of me. You only have a few items and your family needs them quickly". He smiled at me and informed me that his son (13 months old) was diagnosed with Rotavirus. (For those of you who have never had a child with Rotavirus...COUNT YOUR LUCKY STARS!!! It makes the tummy flu look like nothing!!!)My heart went out to him and I told him that he just might want to buy another pack of diapers and gave him The Smile. You know the one that says, "Oh buddy I know what you are going through and I empathize with you" smile. He bought his items and left.
Last Sunday as we were leaving for NC, I noticed that my cell phone battery was almost dead. My car charger had broken and I was hopeful that all would be fine until we got to the hotel and could charge my phone. (Tommi and Kristen-I was not ignoring you-Dying phone =) ) We headed down the interstate and within minutes my phone was dying. Powering down. A little further down the road traffic stopped completely. We were 0.1 mile from an exit so I started up the ramp and hit DETOUR on my handy little Mother's Day Gift. (Which BTW has been worth its weight in Gold) We took a scenic route through a ton of small farm towns and I knew that they were going to take us into Lafayette. I told my mom, if it takes us past a Walmart I am going in to get a phone charger.
15 minutes later there was a Walmart. I quickly stopped and ran into the store. I bought a phone charger, individual packs of Teddy Grahams and Gold Fish and got into line. Of course Lafayette is the home of Purdue University. (Darren would say the greatest university in the world. Jess and I would disagree strongly with him-GO IU!!!) There were a ton of college students and the few cash registers that were open were packed. I got into line and was patiently waiting. (My mom was in the car with 4 children...Not me ;) ) This young man (Purdue College student) looks at me and says, "Oh, Please go in front of me. You just have a few things." I kindly thanked him and told him that my mom would also thank him since she was stuck in the car with 4 excited children.
I believe that Acts of kindness come back like this when you do them. I challenge you all to do 1 Random Act of Kindness and let me know if it comes back to you. :)
Friday, October 31, 2008
Thursday, October 23, 2008
Wise beyond her years...
Today in the car, Fayeth was telling us that this was her brain, while tapping her head. My mom explained to her that her brain was INSIDE and what was the outside called... Fayeth was not able to recall the word (which is happening more frequently) and finally I said, "Fayeth, is that a PENIS or your HEAD?" Thinking that I would give her an OBVIOUS wrong answer. She replies, "I do not have a PENIS!" My mother says, "Well, if you do not have a penis, what do you have?" completely expecting "Bagina", Fayeth replies, "Damma, (Gramma-insert heavy sigh) I have a BRAIN!!!!!"
Yep, my 3 year old completely understands the world. If you have a penis you have NO BRAIN!!!
Yep, my 3 year old completely understands the world. If you have a penis you have NO BRAIN!!!
Wednesday, October 22, 2008
So Proud of one, So disappointed of the other...
A little background. We have a girl that dances with Lindsay and Gabe, we will call her Jane Doe, that Lindsay just forgets who and what she is around. Now, they are not "mean girls". But Jane is the type that likes to have Lindsay just to herself and the 2 of them to be exclusive to each other. Jane talks constantly during class and since her mom is there as a receptionist the Dance Teacher is not able to discipline Jane because the mom makes excuses for her behavior. Jane will talk to Lindsay and Lindsay will answer. Lindsay gets in trouble by me when I hear of this, and she is reminded of being respectful to the Instructor. Jane is use to getting her own way.
Jane cheerleads so she does not dance until October every year. This year Lindsay's dance class is doing very well and they are taking off quite well. The class was learning by leaps and bounds and the Instructor did not have as many issues with Chatty Cathies in the class. Lindsay and Gabe were also asked to join a musical theatre class that is a mixed age group. I spoke with the instructor before and told her that if Gabe and Lindsay were not able to keep up with the older kids to please let me know and we would have them removed from the class. All was well and the kids were keeping up well. One Thursday Jane came to try out the class. Miss B came to me and told me that Lindsay had a real problem keeping her mouth closed during class and that the issue was Jane. Jane would not listen to Miss B and would continue to talk to Lindsay. Lindsay would in turn answer her question when Jane would speak to her, but this was disruptive. Due to scheduling conflicts Lindsay and Gabe had to drop musical theater and thus Jane was not an issue.
Yesterday Lindsay and I had a long talk that Jane would be starting back to dance. We also discussed that Lindsay needed to NOT talk during class to Jane. I discussed respecting Miss A (the instructor) and listening in class. If Jane spoke to her Lindsay was to tell her the first time, "We cannot talk during class" and then "Shhh" or ignore her during class.
So, we have to arrive at the studio at 2:35 for Fayeth 2:45pm class. I got Fayeth into class and waiting back in my car. Around 3:10pm, Jane and her mom (and siblings) pulled into the parking lot, and Jane jumped into my car. I thought, Great! Now the girls will get their chattiness out and be good during class. I did the kid switch at 3:30, took Hannah into the studio and brought Fayeth out. I had my kids stay fastened in their car seats so that I did not have 4 kids jumping around like wild animals in my car and all seemed well.
4:30 rolls around and I take all the kids into the studio to get Hannah and drop off Gabe and Lindsay. I take Hannah and Fayeth back out to the car and ran back into the studio to tell 2 of the ladies about raffle tickets. (Disclaimer-All windows were open, car off w/ radio on, emergency brake on, car right in front of door where I was at. Plus we are in the boonies and one of the other moms in the car next to us was keeping an eye on the kids for me while I ran into the studio. We do this for each other for potty breaks, ect) I am telling Jane's mom about the ticket sales as well as Miss A's mom so everyone was on the same page. I can hear Miss A having a hard time with the noise level in the classroom. I looked into the classroom and of course it was Lindsay and Jane. Miss A looked at me and I said, "Excuse me Miss A, Lindsay what did I discuss with you before class. Now ZIP IT!" Lindsay replied with a look of relief, "Yes, Ma''am". The noise level decreased significantly and they started working on Bar work and terminology. The rule of the "Game" is that if you talk or if you do it wrong you are out. So, I went into the office to finish explaining the tickets and all of a sudden Jane came running into the office pouting and sat her self down on the small beam in the office. Jane's mom told her to go into class and Jane started yelling that she was not going back into class that she got kicked out of the game and that Lindsay was saying SHHH and did not get kicked out and Miss A does not know how to teach a class and that Lindsay needs to be kicked out of the game too. So Jane's mom takes Jane into the studio to talk to Miss Angela about it. I decided to leave at this point.
I go back in after class to get Gabe and Lindsay. Hannah was sleeping and Fayeth was almost asleep in the car. Gabe and Lindsay went out to the car and I was telling Angela that I would not be there next week, nor would the kids. So I go to leave and Jane is in my car again. I tell Jane that she needed to get out of the car now as I needed to leave. Just then a mom from the Nutcracker started asking me a question so I walked over to her car to answer the question. When I walked back, Jane was not in the car. As I was fastening my seatbelt I said, "Did Jane go back into the studio?" Lindsay's little voice from the far back of the car said, "yes". I put the car into reverse and I hear...
Gabe (softly): "She is in the car"
Me: Who?
Gabe: Jane
Me: Where?
Gabe: In the back
I turn around and all I see is a bit of pink on the floor of the far back. I figured it was Lindsay's dance bag. Just then it moved and I realized that it was not a dance bag.
Me: Jane, you need to get out of the car.
Jane: FINE!
She goes to get out when she stops next to Gabe, gets in his face and screams at him..."THANKS A LOT GABE!!!!"
Well, I refused to unlock the door until she apologizes and she finally goes in her snippy attiude way. When she gets out of the car, she refuses to shut the door and screams at me that she hates me. I get out of the car, shut the door and she is pouting along the side of the building.
Me: Jane, what is the problem?
Jane: I HATE YOU and I HATE GABE!!! She then throws her jacket at me and storms into the studio.
I walk into the studio and into the office and I find Jane's mom. I explain that Jane and I had a few words and she has a bit of an attitude about it.
I go on to explain what happened and Jane's mom says, "Well we have spoke and you know that she is having some issues with adjusting right now". OMG! This woman did not make her child apologize or be responsible for her actions. I basically said, "Fine. Talk to you later" and left.
When I got back to the car I immediately praised Gabe for being honest with me even though he knew that he would have to pay the wrath of Jane. I drove for a ways before I could even speak to Lindsay. I was SOOOO PROUD of Gabe and his decision and SOOOOO DISAPPOINTED in Lindsay and her poor judgement and lying to be. When I was able to speak to Lindsay (without snapping her little neck ;) ) I explained that I was not mad at her...I was worse...I was disappointed in her and her lack of judgement. We discussed how she endangered her friends life and that the lying to me was just way out of line.
To handle this situation I am having Lindsay removed from the class. It is not Jane's fault that Lindsay cannot seem to control her mouth and judgement when Jane is around...But I do not have to leave Lindsay in an environment where she is put in that place. Maybe she is not ready for situations like that. But I am nipping this in the bud. First of all because Lindsay does show bad judgement around Jane. Secondly because I NEVER want my child to behave like Jane or believe that she has the right to speak to an adult like Jane did me and other adults.
It is so hard that when you want to relish the joy of a child showing good judgement that you cannot because another one showed such bad judgement. Gabe, I love you buddy and I am SOOOO PROUD OF YOU!!!
Jane cheerleads so she does not dance until October every year. This year Lindsay's dance class is doing very well and they are taking off quite well. The class was learning by leaps and bounds and the Instructor did not have as many issues with Chatty Cathies in the class. Lindsay and Gabe were also asked to join a musical theatre class that is a mixed age group. I spoke with the instructor before and told her that if Gabe and Lindsay were not able to keep up with the older kids to please let me know and we would have them removed from the class. All was well and the kids were keeping up well. One Thursday Jane came to try out the class. Miss B came to me and told me that Lindsay had a real problem keeping her mouth closed during class and that the issue was Jane. Jane would not listen to Miss B and would continue to talk to Lindsay. Lindsay would in turn answer her question when Jane would speak to her, but this was disruptive. Due to scheduling conflicts Lindsay and Gabe had to drop musical theater and thus Jane was not an issue.
Yesterday Lindsay and I had a long talk that Jane would be starting back to dance. We also discussed that Lindsay needed to NOT talk during class to Jane. I discussed respecting Miss A (the instructor) and listening in class. If Jane spoke to her Lindsay was to tell her the first time, "We cannot talk during class" and then "Shhh" or ignore her during class.
So, we have to arrive at the studio at 2:35 for Fayeth 2:45pm class. I got Fayeth into class and waiting back in my car. Around 3:10pm, Jane and her mom (and siblings) pulled into the parking lot, and Jane jumped into my car. I thought, Great! Now the girls will get their chattiness out and be good during class. I did the kid switch at 3:30, took Hannah into the studio and brought Fayeth out. I had my kids stay fastened in their car seats so that I did not have 4 kids jumping around like wild animals in my car and all seemed well.
4:30 rolls around and I take all the kids into the studio to get Hannah and drop off Gabe and Lindsay. I take Hannah and Fayeth back out to the car and ran back into the studio to tell 2 of the ladies about raffle tickets. (Disclaimer-All windows were open, car off w/ radio on, emergency brake on, car right in front of door where I was at. Plus we are in the boonies and one of the other moms in the car next to us was keeping an eye on the kids for me while I ran into the studio. We do this for each other for potty breaks, ect) I am telling Jane's mom about the ticket sales as well as Miss A's mom so everyone was on the same page. I can hear Miss A having a hard time with the noise level in the classroom. I looked into the classroom and of course it was Lindsay and Jane. Miss A looked at me and I said, "Excuse me Miss A, Lindsay what did I discuss with you before class. Now ZIP IT!" Lindsay replied with a look of relief, "Yes, Ma''am". The noise level decreased significantly and they started working on Bar work and terminology. The rule of the "Game" is that if you talk or if you do it wrong you are out. So, I went into the office to finish explaining the tickets and all of a sudden Jane came running into the office pouting and sat her self down on the small beam in the office. Jane's mom told her to go into class and Jane started yelling that she was not going back into class that she got kicked out of the game and that Lindsay was saying SHHH and did not get kicked out and Miss A does not know how to teach a class and that Lindsay needs to be kicked out of the game too. So Jane's mom takes Jane into the studio to talk to Miss Angela about it. I decided to leave at this point.
I go back in after class to get Gabe and Lindsay. Hannah was sleeping and Fayeth was almost asleep in the car. Gabe and Lindsay went out to the car and I was telling Angela that I would not be there next week, nor would the kids. So I go to leave and Jane is in my car again. I tell Jane that she needed to get out of the car now as I needed to leave. Just then a mom from the Nutcracker started asking me a question so I walked over to her car to answer the question. When I walked back, Jane was not in the car. As I was fastening my seatbelt I said, "Did Jane go back into the studio?" Lindsay's little voice from the far back of the car said, "yes". I put the car into reverse and I hear...
Gabe (softly): "She is in the car"
Me: Who?
Gabe: Jane
Me: Where?
Gabe: In the back
I turn around and all I see is a bit of pink on the floor of the far back. I figured it was Lindsay's dance bag. Just then it moved and I realized that it was not a dance bag.
Me: Jane, you need to get out of the car.
Jane: FINE!
She goes to get out when she stops next to Gabe, gets in his face and screams at him..."THANKS A LOT GABE!!!!"
Well, I refused to unlock the door until she apologizes and she finally goes in her snippy attiude way. When she gets out of the car, she refuses to shut the door and screams at me that she hates me. I get out of the car, shut the door and she is pouting along the side of the building.
Me: Jane, what is the problem?
Jane: I HATE YOU and I HATE GABE!!! She then throws her jacket at me and storms into the studio.
I walk into the studio and into the office and I find Jane's mom. I explain that Jane and I had a few words and she has a bit of an attitude about it.
I go on to explain what happened and Jane's mom says, "Well we have spoke and you know that she is having some issues with adjusting right now". OMG! This woman did not make her child apologize or be responsible for her actions. I basically said, "Fine. Talk to you later" and left.
When I got back to the car I immediately praised Gabe for being honest with me even though he knew that he would have to pay the wrath of Jane. I drove for a ways before I could even speak to Lindsay. I was SOOOO PROUD of Gabe and his decision and SOOOOO DISAPPOINTED in Lindsay and her poor judgement and lying to be. When I was able to speak to Lindsay (without snapping her little neck ;) ) I explained that I was not mad at her...I was worse...I was disappointed in her and her lack of judgement. We discussed how she endangered her friends life and that the lying to me was just way out of line.
To handle this situation I am having Lindsay removed from the class. It is not Jane's fault that Lindsay cannot seem to control her mouth and judgement when Jane is around...But I do not have to leave Lindsay in an environment where she is put in that place. Maybe she is not ready for situations like that. But I am nipping this in the bud. First of all because Lindsay does show bad judgement around Jane. Secondly because I NEVER want my child to behave like Jane or believe that she has the right to speak to an adult like Jane did me and other adults.
It is so hard that when you want to relish the joy of a child showing good judgement that you cannot because another one showed such bad judgement. Gabe, I love you buddy and I am SOOOO PROUD OF YOU!!!
Monday, September 29, 2008
It has been a long time...
Yikes! I cannot believe that it has been 5.5 weeks since I last blogged. There is so much going on in my head it would be great to get it all out here and let my brain air out a bit. It is getting a bit cramped in there. :) (Figuratively in my case, not literally ;) )
I have been battling frustrations with Dr. Frim. At times I have the urge to smack him in the back of the head and ask him WTH! But since he plays with the kids brains, I thought better of that idea. We have an appt for November 13th. We will be there the same day and time as another friend of ours. I sort of feel bad for Frim since we BOTH want answers for our children and are not planning on leaving without them.
Lindsay goes for a Lumbar puncture tomorrow to check her pressure again. Almost 2 weeks ago when Lindsay came home from Brownies, Darren and I were looking through her papers and we notice that her neurocognitive issues were horrible. "Disturbing" was the phrase for Darren and my mom. *I* on the other hand did not realize until that moment how bad she had gotten. I see her every day. We emailed the Lord of U of C Neurosurgery and he agreed that she needed an LP to check her pressure and drain her again. If her pressure is high we are going to discuss whether she has a decompression or if we discuss "drainage options" (aka shunting). With shunting before decompressing there is a much bigger chance of causing the cerebellar tonsils to herniate. But we will discuss all avenues with Frim when/if the time arrives.
Fayeth has been waking up and crying in the middle of the night with head pain. I know she needs another MRI, but I am not ready to go there. I am going to speak with my ped and see what she says. I trust her and we will see what she says.
I am getting a copy of our MRI to send to Dr. McKinnon to see what he thinks for Gabe's head size. He has thought since February that we need to make Gabe's head larger. So we will see what he thinks based on Gabe's most recent MRI.
Onto a better note, because I refuse to be one of those people who wallows in self pity and who enjoys the attention "poor me" brings, Nutcracker is in FULL SWING. The children got wonderful parts. Gabe is a party boy and a soldier. The hopes is that Gabe will be able to do the part of a party boy since the youngest person in the scene is almost 10. He gets to partner with the almost 10 year old little girl. He was really nervous his first rehearsal and did okay. Not his normal cute ham it up self. It was funny. He walked into the rehearsal studio, walked back out with a panicked look on his face and said..."I go in there with THEM???" Yes buddy. Go on in there. The other moms who were waiting were trying to hold back their laughs, it was just that cute.
Lindsay is a soldier and is very happy not to be a bon bon again and Hannah is a gingerbread. Hannah at one point had 2 parts, a gingerbread and a mouse, however there was 1 child that auditioned and was not cast and Mrs. T asked Hannah if this little girl could have her mouse part. Hannah was crushed and Lindsay offered to give the little girl her part so that Hannah nor the little girl were not sad. I told her than she would have no part and she said if it made others happy she would sit out. I was really proud of her. However it did not come to that because Hanah came around and voluntarily gave up her mouse part.
Hannah in her costume. There is a headpiece and red felt cheeks.
My friend Brandi and I are still the co-backstage coordinators. It takes a huge amount of time, but i enjoy dealing with the parents and all the kids. At the very end of the show when Clara is telling her mom about her adventure and the curtain goes up and all that is left is the hazy screen and the "characters" are waving...I get goosebumps. Hell I have goosebumps now just thinking about it.
I have a daisy troop. I am currently up to 16 girls. I have 3 first graders and 13 kindy. From what I understand there are MORE girls who want to join. FUN! ;) Brandi brings Luci down here for meetings, long story but they also have a mean leader where she is from. So Brandi is one of my other co-leaders. Which is nice since if Lindsay needs surgery Brandi is there to help Elaine.
After much thought about what to do with Lindsay we finally made a decision. This year the 1st grade daisies were meeting at a time that Lindsay could not participate. There is very little love loss with the 1st grade leader. Since technically Lindsay is in 2nd grade I opted to put her with the 2nd grade brownies. She did not get to do the bridging ceremony, however she is very happy with the older girls and they are a better fit for her. In the daisy troop they made fun of her because she was homeschooled. One girl told her obviously she was too stupid to go to school that is why we homeschooled. * Rolls Eyes * It was not a nice experience for Lindsay. This other troop is very nice. 3 of the girls in Hannah's troop have sisters in Lindsay's troop. It is a wonderful and loving troop and they have taken Lindsay under their wing. I was concerned that her neurocog issues would cause her to be made fun of but the Leader spoke with her co-leaders and when Lindsay is having a bad day hey ensure that she is getting a little extra help.
Well, I must get moving. Time for a spelling test. We have done 1.5 hours of school in the time I have been curled up in bed with them. These are the days...
I have been battling frustrations with Dr. Frim. At times I have the urge to smack him in the back of the head and ask him WTH! But since he plays with the kids brains, I thought better of that idea. We have an appt for November 13th. We will be there the same day and time as another friend of ours. I sort of feel bad for Frim since we BOTH want answers for our children and are not planning on leaving without them.
Lindsay goes for a Lumbar puncture tomorrow to check her pressure again. Almost 2 weeks ago when Lindsay came home from Brownies, Darren and I were looking through her papers and we notice that her neurocognitive issues were horrible. "Disturbing" was the phrase for Darren and my mom. *I* on the other hand did not realize until that moment how bad she had gotten. I see her every day. We emailed the Lord of U of C Neurosurgery and he agreed that she needed an LP to check her pressure and drain her again. If her pressure is high we are going to discuss whether she has a decompression or if we discuss "drainage options" (aka shunting). With shunting before decompressing there is a much bigger chance of causing the cerebellar tonsils to herniate. But we will discuss all avenues with Frim when/if the time arrives.
Fayeth has been waking up and crying in the middle of the night with head pain. I know she needs another MRI, but I am not ready to go there. I am going to speak with my ped and see what she says. I trust her and we will see what she says.
I am getting a copy of our MRI to send to Dr. McKinnon to see what he thinks for Gabe's head size. He has thought since February that we need to make Gabe's head larger. So we will see what he thinks based on Gabe's most recent MRI.
Onto a better note, because I refuse to be one of those people who wallows in self pity and who enjoys the attention "poor me" brings, Nutcracker is in FULL SWING. The children got wonderful parts. Gabe is a party boy and a soldier. The hopes is that Gabe will be able to do the part of a party boy since the youngest person in the scene is almost 10. He gets to partner with the almost 10 year old little girl. He was really nervous his first rehearsal and did okay. Not his normal cute ham it up self. It was funny. He walked into the rehearsal studio, walked back out with a panicked look on his face and said..."I go in there with THEM???" Yes buddy. Go on in there. The other moms who were waiting were trying to hold back their laughs, it was just that cute.
Lindsay is a soldier and is very happy not to be a bon bon again and Hannah is a gingerbread. Hannah at one point had 2 parts, a gingerbread and a mouse, however there was 1 child that auditioned and was not cast and Mrs. T asked Hannah if this little girl could have her mouse part. Hannah was crushed and Lindsay offered to give the little girl her part so that Hannah nor the little girl were not sad. I told her than she would have no part and she said if it made others happy she would sit out. I was really proud of her. However it did not come to that because Hanah came around and voluntarily gave up her mouse part.
Hannah in her costume. There is a headpiece and red felt cheeks. I have a daisy troop. I am currently up to 16 girls. I have 3 first graders and 13 kindy. From what I understand there are MORE girls who want to join. FUN! ;) Brandi brings Luci down here for meetings, long story but they also have a mean leader where she is from. So Brandi is one of my other co-leaders. Which is nice since if Lindsay needs surgery Brandi is there to help Elaine.
After much thought about what to do with Lindsay we finally made a decision. This year the 1st grade daisies were meeting at a time that Lindsay could not participate. There is very little love loss with the 1st grade leader. Since technically Lindsay is in 2nd grade I opted to put her with the 2nd grade brownies. She did not get to do the bridging ceremony, however she is very happy with the older girls and they are a better fit for her. In the daisy troop they made fun of her because she was homeschooled. One girl told her obviously she was too stupid to go to school that is why we homeschooled. * Rolls Eyes * It was not a nice experience for Lindsay. This other troop is very nice. 3 of the girls in Hannah's troop have sisters in Lindsay's troop. It is a wonderful and loving troop and they have taken Lindsay under their wing. I was concerned that her neurocog issues would cause her to be made fun of but the Leader spoke with her co-leaders and when Lindsay is having a bad day hey ensure that she is getting a little extra help.
Well, I must get moving. Time for a spelling test. We have done 1.5 hours of school in the time I have been curled up in bed with them. These are the days...
Thursday, August 21, 2008
Full Circle...
Sometimes when I take a moment to stop and think about how far we have come in the past year it is so very hard to believe. Last August, we were a week out from Gabe's drain trial. Those were really dark months. Literally and figuratively. Gabe's intracranial pressure was so high that he could not stand light. We could not go out side, we could not have the curtains open down stairs for any length of time. The TV had to be on low, and the girls had to be quite because any increase in noise put Gabe over the top with pain. I am not sure how many time I called Rachel to just talk me off the ledge. Rachel was just under 2 years out from Decompression and Shunt surgeries. Everyone else I had spoke to had older children and it was good to talk to someone who had a younger child go through this.
I remember when I emailed/text messaged Rachel and told her that they wanted to do a drain trial and what the hell did that entail she responded, "Oh, this is a phone call". LOL She called me and we talked. She talked me through the entire process and while it helped to know what was going to happen, I was just in a bad place. I do not know how to describe it. It would be a cross between being in a horror movie, riding a horrible roller coaster and being so depressed that you just want to lie in bed and never get up. That might just scratch the surface. It was really hard to even cope with the days. Everyone else was getting their 5 year olds ready for school and I am getting my child ready for ANOTHER surgery. My friends were discussing football, soccer and all types of sports that Gabe could no longer play. I had nothing to offer. A little piece of me was dying inside knowing that Gabe could never do those things again. I got so tired of explaining what was going on with Gabe, no one could seem to grasp the complexity of the nature of his issues or that surgery or a shunt were not complete fixes.
Every morning I would wake up (after my brief amount of sleep since Gabe did not sleep) and I would be full of hope that that morning the Diamox would miraculously work and he would not need the drain trial or shunt. Now that feeling was shot down within the first 60 minutes that Gabe was up, and I would crash. Every time I would crash and realize that we needed the drain trial and we were going to need a shunt it was further and further down into the darkness.
The day of the drain trial was rock bottom. I cannot even begin to put into words how badly I felt, how scared I was , how mad that was, how absolutely terrified I was. If the windows in the hallway outside of the surgery waiting room opened, I honestly probably would have flung myself out the window onto Maryland Ave. S.E.R.I.O.U.S.L.Y.
I can say that I am not the only person that the drain trial caused to push over the edge. During Riley's drain trial he ended up developing a potential infection in his CSF. (Staph in the CFS=Nasty Meningitis) He was leaking and Rachel had to lie in that bed with him. The resident tried 3 times to "seal" his leak but it did not work then the resident stopped answering his pages. Finally by morning with a little guy who did not sleep due to everything going on, a new resident came in to do rounds and Rachel lost it with him. He finally looked at her and said, "Mrs. J, I think that you need to take a vacation to the RMH." Now I know that will get some up in arms, but to know the resident who said that makes me laugh hysterically and to know that the resident was able to identify that Mom needed a break was a good thing. (On a side note Riley did not have an infection =) )So it is something about the drain trial that causes mom's to go crazy. LOL
In February I met an awesome mom (Kristen) who was just starting this journey with her son (Nic). They traveled all the way from Oklahoma to see the Great and Powerful Frim. I also met a mom (Cindy) whose daughter (Riley C) was post decompression staying at the RMH until her post op clearing her to drive back to Wisconsin (The Mosquito State-and yes Cindy can appreciate that as she was at camp). They had the unfortunate experience of meeting another veteran mom who likes people to feel that her child is the most sick and complex patient that The Great and Powerful has. I am not sure how many times I said, "Gabe and XXXX are not the norms."
The next morning Kristen and Nic had to be at the hospital early for his MRI and I had to go later. Since when we left they were not back at the house I stopped in Radiology to see how they were doing. Kristen was sitting there, thumbing through a magazine looking quite worried. I remember thinking do I look like that when Gabe has procedures? So I sat with her and killed time until they called her back since Nic was in recovery and I had to go to the OR holding with Gabe.
I was able to meet up with Kristen and Nic a few more times and we developed a friendship. During Nic's recovery he developed issues and they told her they wanted to do an MRI and LP when she came for her post op visit. They thought he had high pressure. I was honest with Kristen and told her I would be surprised if they told her he did NOT have high pressure based on his symptoms. The day he had his MRI and LP she called me. I remember the urgency and fear in her voice. "His pressure is 31.5" It was a cross between a statement and a question.
While she has tried the meds, I have text messaged her or emailed her. I have called her. The other day she text messaged me and said they wanted to schedule Nic for a drain trial. What was that going to entail. I text messaged her back, "That is a phone call. I will sprain my thumbs text messaging all that".
That is when it hit. We have come full circle. We are no longer the new parents on the block. Our "block" has a new family. I am so sad that Kristen, Nic and the family are part of this "fun and exciting group of kids" but I am grateful that I got to meet them. Please keep Kristen and Nic in your thoughts and prayers as they plan for their trip to Chicago for the Drain Trial on Sept 3.
Kristen, I know where you are now and I promise you that you will eventually look back and it won't be quite so bad as where you are now. Many hugs my friend!
I remember when I emailed/text messaged Rachel and told her that they wanted to do a drain trial and what the hell did that entail she responded, "Oh, this is a phone call". LOL She called me and we talked. She talked me through the entire process and while it helped to know what was going to happen, I was just in a bad place. I do not know how to describe it. It would be a cross between being in a horror movie, riding a horrible roller coaster and being so depressed that you just want to lie in bed and never get up. That might just scratch the surface. It was really hard to even cope with the days. Everyone else was getting their 5 year olds ready for school and I am getting my child ready for ANOTHER surgery. My friends were discussing football, soccer and all types of sports that Gabe could no longer play. I had nothing to offer. A little piece of me was dying inside knowing that Gabe could never do those things again. I got so tired of explaining what was going on with Gabe, no one could seem to grasp the complexity of the nature of his issues or that surgery or a shunt were not complete fixes.
Every morning I would wake up (after my brief amount of sleep since Gabe did not sleep) and I would be full of hope that that morning the Diamox would miraculously work and he would not need the drain trial or shunt. Now that feeling was shot down within the first 60 minutes that Gabe was up, and I would crash. Every time I would crash and realize that we needed the drain trial and we were going to need a shunt it was further and further down into the darkness.
The day of the drain trial was rock bottom. I cannot even begin to put into words how badly I felt, how scared I was , how mad that was, how absolutely terrified I was. If the windows in the hallway outside of the surgery waiting room opened, I honestly probably would have flung myself out the window onto Maryland Ave. S.E.R.I.O.U.S.L.Y.
I can say that I am not the only person that the drain trial caused to push over the edge. During Riley's drain trial he ended up developing a potential infection in his CSF. (Staph in the CFS=Nasty Meningitis) He was leaking and Rachel had to lie in that bed with him. The resident tried 3 times to "seal" his leak but it did not work then the resident stopped answering his pages. Finally by morning with a little guy who did not sleep due to everything going on, a new resident came in to do rounds and Rachel lost it with him. He finally looked at her and said, "Mrs. J, I think that you need to take a vacation to the RMH." Now I know that will get some up in arms, but to know the resident who said that makes me laugh hysterically and to know that the resident was able to identify that Mom needed a break was a good thing. (On a side note Riley did not have an infection =) )So it is something about the drain trial that causes mom's to go crazy. LOL
In February I met an awesome mom (Kristen) who was just starting this journey with her son (Nic). They traveled all the way from Oklahoma to see the Great and Powerful Frim. I also met a mom (Cindy) whose daughter (Riley C) was post decompression staying at the RMH until her post op clearing her to drive back to Wisconsin (The Mosquito State-and yes Cindy can appreciate that as she was at camp). They had the unfortunate experience of meeting another veteran mom who likes people to feel that her child is the most sick and complex patient that The Great and Powerful has. I am not sure how many times I said, "Gabe and XXXX are not the norms."
The next morning Kristen and Nic had to be at the hospital early for his MRI and I had to go later. Since when we left they were not back at the house I stopped in Radiology to see how they were doing. Kristen was sitting there, thumbing through a magazine looking quite worried. I remember thinking do I look like that when Gabe has procedures? So I sat with her and killed time until they called her back since Nic was in recovery and I had to go to the OR holding with Gabe.
I was able to meet up with Kristen and Nic a few more times and we developed a friendship. During Nic's recovery he developed issues and they told her they wanted to do an MRI and LP when she came for her post op visit. They thought he had high pressure. I was honest with Kristen and told her I would be surprised if they told her he did NOT have high pressure based on his symptoms. The day he had his MRI and LP she called me. I remember the urgency and fear in her voice. "His pressure is 31.5" It was a cross between a statement and a question.
While she has tried the meds, I have text messaged her or emailed her. I have called her. The other day she text messaged me and said they wanted to schedule Nic for a drain trial. What was that going to entail. I text messaged her back, "That is a phone call. I will sprain my thumbs text messaging all that".
That is when it hit. We have come full circle. We are no longer the new parents on the block. Our "block" has a new family. I am so sad that Kristen, Nic and the family are part of this "fun and exciting group of kids" but I am grateful that I got to meet them. Please keep Kristen and Nic in your thoughts and prayers as they plan for their trip to Chicago for the Drain Trial on Sept 3.
Kristen, I know where you are now and I promise you that you will eventually look back and it won't be quite so bad as where you are now. Many hugs my friend!
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