As many of you know I am part of the 1p36 Deletion Syndrome yahoo group. It has been my lifesaver and saving grace almost everyday since I found it! There are some truly amazing and inspiring people on that site and I just wanted to share a bit about it.
I try to check the yahoo group everyday..I usually don't go two days without looking at it. I don't always have time to respond to some of the topics that are being shared but I do try because I appreciate it when the other parents respond to my posts. I have read soooo much about the other kiddos and their families. It's a group that I can share anything and everything about my little Sammie with and they have either gone through it or have some incredible advice about how to get through it.
Some weeks I am overwhelmingly reminded of how important the group is to me and the other members. Just in the last seven days..one mother reported her little peanut is seizure free! How exciting that is! I would venture to say that 100% of the people I know are terrified of the thought of someone having a seizure, myself included. There is nothing like being told your baby is seizure free. As the parent you are absolutely helpless in the sense that there is really nothing you can do for your child except wait. Another mother told us her story about her last days with her girl. I cried my eyes out on Sunday reading about her and her daughters struggles during her last months. How to respond to this? I can't possibly begin to imagine what it's like to lose a child and hope to NEVER be in that position. Another mother told about an upcoming surgery on her little one's spine that is very risky but must happen sooner that later. Another was writing about her 20 month old not being within the growth charts..something my Sammie has never been in either! And another was telling us about her little one's Cardiac issues. Of course there is always good news on the site to! But some weeks are much more medically busy then others.
And I sit back and think how darn lucky I am. My little Sammie is plugging away right now without any major concerns at the moment...phew! I send my thoughts and prayers out to my yahoo people everyday. And I am reminded to take life one day at a time and enjoy all the happy moments.
There are no other people in my life like the people on the yahoo group. They are my people...the one's that know everything about my struggles and triumphs as a parent with a child with 1p36... I can't wait to see them again!
Tuesday, August 19, 2008
Wednesday, August 6, 2008
Fish & Chips
A week and a year ago I was in Boston with my little guy nervously awaiting the early morning hours of August 14th. That's the day Samuel's Open-heart surgery was scheduled for.
The week prior to the that was an interesting one to say the least. I work at a restaurant called Geoffrey's Pub & Restaurant and one of my best friends (who was also my boss!) took 8 weeks off for maternity leave so there I was for 8 weeks trying to act like the manager and a server. I won't go into details but lets just say I was drowning in stress!
My co-workers all knew that it was almost time for Sammie to have his surgery and they were all sympathetic and wonderful. I couldn't have asked for better people to be surrounded by.
There is this one night that sticks out in my mind....
It was one of the last nights I worked before Sammie's surgery. It was a pretty busy night and I was in the office doing all the paper work that I didn't get to earlier in the week because I was also waitressing at the time. One of my good friends/servers came into the office to let me know that she had a complaint. I asked what the situation was and she had offered the "free dessert" we offer first and the lady said no thanks. I asked the server if the lady was upset and she said "no I think she just wanted to say that it wasn't as good as last time". The lady had ordered our Fish & Chips. Now I hate fish and have never eaten it in my life. But, I have worked at the Pub for 4 years now and that is the most popular plate on the menu. People rave about it and I can honestly say that I have NEVER had a complaint about it. To make a long story short...I was at the computer helping another server with a computer issue and suddenly this lady starts yelling "ARE YOU THE MANAGER?!!!" Of course I turned around with a stunned look on my face and quietly said yes. I walked over to her because the place was full and now everyone is starring at us! It was the Fish & Chips lady...but I didn't know this cause I never saw her. She continued to scream at me about her Fish & Chips and that I should have given it to her for free. We went back and forth about what the server did/said and it all matched up. I told her that I didn't come to the table because I discussed it with the server and I decided that she wasn't upset she was just "letting us know" it wasn't as good. She had me pinned against one of the booths as she continued to scream at me and then she started pointing her finger in my face. From that point on I was no longer listening to her. Over and over and over again in my mind I kept saying touch me one time lady...one time..and it's self-defense! I kept envisioning doing a spinning side kick right into her Solar Plex. knocking the wind out of her and sending her across the room. Touch me one time.....it didn't happen.
Now I would say that I am not a violent person. I have never started a fight. I've trained in martial arts more than half my life and understand (no matter what my ex says!) that I have an advantage over some! But really..I wanted nothing more than to send this woman across the room. She was tearing into me in front of her own children about Fish & Chips and after a while of being yelled at I started getting defensive, not yelling but standing my ground. All the while I'm thinking look at this lady....I'm leaving for Boston so my son can have open-heart surgery and this lady is all distraught about Fish & Chips....I should say something..I should tell I don't care about her damn Fish & Chips and then tell her why....F*ck your Fish & Chips lady! Of course I only said that in my head cause I did need my job back once I returned from Boston! I just couldn't believe it. I would/will never get that upset about food unless I'm starving and I mean starving like to the point I might actually die of starvation. It's Fish & Chips lady! The best part about it is that she ate every last morsel on her plate. She stomped out of the restaurant screaming that she would never come back and I quietly screamed back good! A couple of weeks ago I saw her at the Pub again. The weird thing was we met each other coming up the stairs and I just starred at her. I couldn't believe it...that b*tch came back. I really had to hold my tongue. I wanted to ask her if she remembered me..and I wanted to tell her that I left Plattsburgh a couple of days after that for Boston. I was/still am curious about whether or not she would feel like an ass!?!?! Oh well!
The Fish & Chips were soon forgotten as we packed for Boston. We flew down. We got there 2 days early. The first night we didn't do much. The second day we had to go to the hospital to do all the pre-op stuff. And yes that took alllllllllll day. There were so many doctors, tests, questions, answers. We had lots of family support...thank god. So we went out to eat that night because I knew we probably wouldn't eat the next day. At this point I'm not sure that I was even sleeping. I mean I layed down and shut my eyes at night but my mind was racing. I told Steve to bring his Xanex (sp?) because I wasn't sure I could handle it.
So then it was surgery day. He got all his kisses from the family and then Steve and I were allowed to go into pre-op with him. They had us dress him in these pj's that were made for a 3 year old (he was 10 months old at the time). And then they asked us if we wanted his stuffed animal to go with him so he wouldn't be alone..and then I saw the Anaesthesiologist that we had met the day before and I knew it was time. I wanted to say something, I wanted to change my mind, I wanted to grab him and run out of there as fast as I could, but this was reality and he had to have the surgery. They took him and I said please please please take care of my baby. I'm not sure really how many times I said please and then we were escorted to the waiting area where all our family was and I just cried and thought about puking but didn't.
Four and a half hours. They called us to tell us when he was put on by-pass, called us I think one time during the procedure and then when they took him off the by-pass. And then we had to wait another 30 or so minutes to get him cleaned up and to the critical care floor. I'm not sure a day has been longer for me. The next week was the most intense I hope to experience in my life. I have lost people close to me but the couple of incidents Samuel had were the most devastating times I have experienced in my life. The feeling is indescribable when your child codes and you witness doctors and nurses running to your helpless child.
And yet there are people in the world who go crazy in the brain over Fish & Chips. I have learned five lifetimes of compassion, courage, empathy, understanding, patients, and optimism from my Samuel. I would never wish what he has gone through on any child. And I know that there are children who go through and have it much worse and yes some that don't make it. Most people haven't experienced life on the Cardiac Critical Care Unit at Boston's Children's Hospital because if they had then their definition of "problems, issues, and struggles" would change. Some of the children on that floor had been there since the day they were born and some were never going to leave. How could I as a human continue to think my trivial "problems" were really relative?
I try to take things in stride and yes I get frustrated and discouraged but I always gauge it....is this really a big deal? Come on Shannon...does this possibly compare? I am always accused of being happy-go -lucky...I couldn't tell you how many times people have told me that not everyone is as optimistic as I am. Almost like they're accusing me of being bad in some way. And I try to share my story..I try to tell people so that they themselves do no become the Fish & Chips lady. I am not at all saying that peoples "problems" are trivial..certainly not. We were all given/learned certain tools and I understand we all cope differently but next time you see yourself becoming Fish & Chips lady please remember that you have NO IDEA what is going on in that persons life. Remember it's only Fish & Chips...it's not Open-Heart Surgery!
The week prior to the that was an interesting one to say the least. I work at a restaurant called Geoffrey's Pub & Restaurant and one of my best friends (who was also my boss!) took 8 weeks off for maternity leave so there I was for 8 weeks trying to act like the manager and a server. I won't go into details but lets just say I was drowning in stress!
My co-workers all knew that it was almost time for Sammie to have his surgery and they were all sympathetic and wonderful. I couldn't have asked for better people to be surrounded by.
There is this one night that sticks out in my mind....
It was one of the last nights I worked before Sammie's surgery. It was a pretty busy night and I was in the office doing all the paper work that I didn't get to earlier in the week because I was also waitressing at the time. One of my good friends/servers came into the office to let me know that she had a complaint. I asked what the situation was and she had offered the "free dessert" we offer first and the lady said no thanks. I asked the server if the lady was upset and she said "no I think she just wanted to say that it wasn't as good as last time". The lady had ordered our Fish & Chips. Now I hate fish and have never eaten it in my life. But, I have worked at the Pub for 4 years now and that is the most popular plate on the menu. People rave about it and I can honestly say that I have NEVER had a complaint about it. To make a long story short...I was at the computer helping another server with a computer issue and suddenly this lady starts yelling "ARE YOU THE MANAGER?!!!" Of course I turned around with a stunned look on my face and quietly said yes. I walked over to her because the place was full and now everyone is starring at us! It was the Fish & Chips lady...but I didn't know this cause I never saw her. She continued to scream at me about her Fish & Chips and that I should have given it to her for free. We went back and forth about what the server did/said and it all matched up. I told her that I didn't come to the table because I discussed it with the server and I decided that she wasn't upset she was just "letting us know" it wasn't as good. She had me pinned against one of the booths as she continued to scream at me and then she started pointing her finger in my face. From that point on I was no longer listening to her. Over and over and over again in my mind I kept saying touch me one time lady...one time..and it's self-defense! I kept envisioning doing a spinning side kick right into her Solar Plex. knocking the wind out of her and sending her across the room. Touch me one time.....it didn't happen.
Now I would say that I am not a violent person. I have never started a fight. I've trained in martial arts more than half my life and understand (no matter what my ex says!) that I have an advantage over some! But really..I wanted nothing more than to send this woman across the room. She was tearing into me in front of her own children about Fish & Chips and after a while of being yelled at I started getting defensive, not yelling but standing my ground. All the while I'm thinking look at this lady....I'm leaving for Boston so my son can have open-heart surgery and this lady is all distraught about Fish & Chips....I should say something..I should tell I don't care about her damn Fish & Chips and then tell her why....F*ck your Fish & Chips lady! Of course I only said that in my head cause I did need my job back once I returned from Boston! I just couldn't believe it. I would/will never get that upset about food unless I'm starving and I mean starving like to the point I might actually die of starvation. It's Fish & Chips lady! The best part about it is that she ate every last morsel on her plate. She stomped out of the restaurant screaming that she would never come back and I quietly screamed back good! A couple of weeks ago I saw her at the Pub again. The weird thing was we met each other coming up the stairs and I just starred at her. I couldn't believe it...that b*tch came back. I really had to hold my tongue. I wanted to ask her if she remembered me..and I wanted to tell her that I left Plattsburgh a couple of days after that for Boston. I was/still am curious about whether or not she would feel like an ass!?!?! Oh well!
The Fish & Chips were soon forgotten as we packed for Boston. We flew down. We got there 2 days early. The first night we didn't do much. The second day we had to go to the hospital to do all the pre-op stuff. And yes that took alllllllllll day. There were so many doctors, tests, questions, answers. We had lots of family support...thank god. So we went out to eat that night because I knew we probably wouldn't eat the next day. At this point I'm not sure that I was even sleeping. I mean I layed down and shut my eyes at night but my mind was racing. I told Steve to bring his Xanex (sp?) because I wasn't sure I could handle it.
So then it was surgery day. He got all his kisses from the family and then Steve and I were allowed to go into pre-op with him. They had us dress him in these pj's that were made for a 3 year old (he was 10 months old at the time). And then they asked us if we wanted his stuffed animal to go with him so he wouldn't be alone..and then I saw the Anaesthesiologist that we had met the day before and I knew it was time. I wanted to say something, I wanted to change my mind, I wanted to grab him and run out of there as fast as I could, but this was reality and he had to have the surgery. They took him and I said please please please take care of my baby. I'm not sure really how many times I said please and then we were escorted to the waiting area where all our family was and I just cried and thought about puking but didn't.
Four and a half hours. They called us to tell us when he was put on by-pass, called us I think one time during the procedure and then when they took him off the by-pass. And then we had to wait another 30 or so minutes to get him cleaned up and to the critical care floor. I'm not sure a day has been longer for me. The next week was the most intense I hope to experience in my life. I have lost people close to me but the couple of incidents Samuel had were the most devastating times I have experienced in my life. The feeling is indescribable when your child codes and you witness doctors and nurses running to your helpless child.
And yet there are people in the world who go crazy in the brain over Fish & Chips. I have learned five lifetimes of compassion, courage, empathy, understanding, patients, and optimism from my Samuel. I would never wish what he has gone through on any child. And I know that there are children who go through and have it much worse and yes some that don't make it. Most people haven't experienced life on the Cardiac Critical Care Unit at Boston's Children's Hospital because if they had then their definition of "problems, issues, and struggles" would change. Some of the children on that floor had been there since the day they were born and some were never going to leave. How could I as a human continue to think my trivial "problems" were really relative?
I try to take things in stride and yes I get frustrated and discouraged but I always gauge it....is this really a big deal? Come on Shannon...does this possibly compare? I am always accused of being happy-go -lucky...I couldn't tell you how many times people have told me that not everyone is as optimistic as I am. Almost like they're accusing me of being bad in some way. And I try to share my story..I try to tell people so that they themselves do no become the Fish & Chips lady. I am not at all saying that peoples "problems" are trivial..certainly not. We were all given/learned certain tools and I understand we all cope differently but next time you see yourself becoming Fish & Chips lady please remember that you have NO IDEA what is going on in that persons life. Remember it's only Fish & Chips...it's not Open-Heart Surgery!
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