I can't continue this blog without first sending out my love and prayers to the Harrison family. They have found themselves in a position that I have thought about numerous times but have been fortunate enough to not actually be in. God Bless little Chloe. While I did not personally know her...she and her family are part of our 1p36 family and I am deeply saddened today for their loss. I'd like to thank my dear friend and 1p36 family member Carmen for the following scripture which has helped me this evening:
He will wipe every tear from their eyes.
There won't be death anymore.
There won't be any grief, crying, or pain,
because the first things have disappeared.”
The one sitting on the throne said, “See, I am making all things new!”
He said, “Write this: ‘These words are trustworthy and true.’” Rev. 21:3
We have had to many losses this year in our family and I find this night I am torn between grieving and celebrating.
My son will turn 2 years old in 18 hours and 35 minutes. And I will celebrate his birth as we wake tomorrow and the whole day through but will be thinking of Chloe, Annette and Jenny. The loss of these three beautiful girls reminds me how lucky I am to have my Sammie here.
He has been through so much...much like the girls... and is still here.
I ask that anyone who reads this..please hug your loved ones, kiss your little angels..call your sister, brother, mother, father, celebrate the day.
Sending out a very Happy Second Birthday to my baby boy....Sammie(my own little angel)...
Sending out love, hugs, and prayers to all the 1p36 families...
Tuesday, October 21, 2008
"He must have an extra Chromosome..."
Being a server I often reach the table in the middle of conversations that I'm not interested in hearing but that's just what happens sometimes! A few weeks ago I was waiting on three girls who were waiting for a guy to join them. I went to the table a couple of minutes after his arrival and as I approached the table I heard him say..."he's an idiot..he must have an extra chromosome..hahaha!!". My first instinct was to smack him in the forehead like they do on the V8 commercials, but I need my job. Then I realized that I was standing at the table just staring at him and they were all staring at me and I had forgotten why I was even at the table. I was going through the files in my head for a snappy response, but I had nothing.
I have heard many many many references about being mentally retarded, slow, and idiot and so on..but this I had NEVER heard. Every time I have asked someone not to use the word retard their response is either OK or their excuse is they didn't actually mean they thought the person was a retard but everyone uses the word and blah blah blah... But to say "he must have an extra chromosome" when really the person he is referencing doesn't have a chromosome issue is an ignorant and naive statement.
This uneducated person has no idea the weight his statement carries. As a mamma bear I wanted to lay into him and tell him about the last two and a half years I've had. The couple of times I thought I was going to lose my son, the 100's of doctors visits we have had and continue to have, the surgeries I have sat through waiting patiently to hear that he is ok and hopefully his life will be improved in some way because of it, the hundreds of hours I have spent working with him at home and with early intervention in hopes that he will walk/talk, run to me, reach for me, tell me he loves me with his own little voice, I wanted to tell him about Sammie's super big sister who has watched her precious little brother at Boston Children's Hospital on more than one occasion hooked up to hundreds of wires, machines, and other things we can't possibly understand unless your a nurse or doctor. Tell him how she rubbed his head will he was sedated for days so that he wouldn't feel the pain of the 3 inch incision from where they opened his chest and took his heart out to fix it. How my entire family and thousands of other people have spent their own time thinking about and praying for my little miracle. And that would have been just the beginning of the lesson for this young man.
Then I would get a bit more scientific on him and tell him that my son was born with a genetic syndrome that I'm positive he has never heard of and while he is actually missing the tip of his first chromosome and does not have an extra chromosome...I can relate to the parents of children with Down's. Their stories are very similar to mine.. My son's genetic anomaly occurs in every 1 to 5,000/10,000 births, neither his father nor I are carriers of the syndrome (meaning neither one of us has a trans location) this was a random occurrence for us. Most of these genetic "mistakes" end in a miscarriage because the fetus knows that something is wrong, but some how in Sammie's and other cases the chromosome miraculously caps itself off and the pregnancy continues. There is sooo much information being transferred when a baby is created that it's amazing that so many of us come out with all the information in order!
I ask that you pass this blog on or think about it the next time you or someone you know makes such a harsh statement. I'm still beating myself up for not saying anything to that guy. I can't expect that all people will empathize with my reasoning and I'm often surprised that people will want to argue theirs when it comes to their use of vocab.
My little peanut is developmentally delayed. Mentally retarded is no longer used in the medical field because of its negative connotations. My little guy will receive services of some sort his entire life. My little guy will ride the short bus to school because it is safer for him. My little guy will carry stigmas with him his whole life even though it's not his fault. His chromosome deletion does not make him an idiot. In fact, it's quite the opposite. He works 10 times as hard to learn and do something new! The fact that he is capable of learning even though he is missing information that would make things easier for the "normal" person proves that he is in no way an idiot.
Next time I will smack that guy or whoever in the forehead. Hey, if they can do it to people for not eating their veggies then why can't I do it to people for being rude?!
I have heard many many many references about being mentally retarded, slow, and idiot and so on..but this I had NEVER heard. Every time I have asked someone not to use the word retard their response is either OK or their excuse is they didn't actually mean they thought the person was a retard but everyone uses the word and blah blah blah... But to say "he must have an extra chromosome" when really the person he is referencing doesn't have a chromosome issue is an ignorant and naive statement.
This uneducated person has no idea the weight his statement carries. As a mamma bear I wanted to lay into him and tell him about the last two and a half years I've had. The couple of times I thought I was going to lose my son, the 100's of doctors visits we have had and continue to have, the surgeries I have sat through waiting patiently to hear that he is ok and hopefully his life will be improved in some way because of it, the hundreds of hours I have spent working with him at home and with early intervention in hopes that he will walk/talk, run to me, reach for me, tell me he loves me with his own little voice, I wanted to tell him about Sammie's super big sister who has watched her precious little brother at Boston Children's Hospital on more than one occasion hooked up to hundreds of wires, machines, and other things we can't possibly understand unless your a nurse or doctor. Tell him how she rubbed his head will he was sedated for days so that he wouldn't feel the pain of the 3 inch incision from where they opened his chest and took his heart out to fix it. How my entire family and thousands of other people have spent their own time thinking about and praying for my little miracle. And that would have been just the beginning of the lesson for this young man.
Then I would get a bit more scientific on him and tell him that my son was born with a genetic syndrome that I'm positive he has never heard of and while he is actually missing the tip of his first chromosome and does not have an extra chromosome...I can relate to the parents of children with Down's. Their stories are very similar to mine.. My son's genetic anomaly occurs in every 1 to 5,000/10,000 births, neither his father nor I are carriers of the syndrome (meaning neither one of us has a trans location) this was a random occurrence for us. Most of these genetic "mistakes" end in a miscarriage because the fetus knows that something is wrong, but some how in Sammie's and other cases the chromosome miraculously caps itself off and the pregnancy continues. There is sooo much information being transferred when a baby is created that it's amazing that so many of us come out with all the information in order!
I ask that you pass this blog on or think about it the next time you or someone you know makes such a harsh statement. I'm still beating myself up for not saying anything to that guy. I can't expect that all people will empathize with my reasoning and I'm often surprised that people will want to argue theirs when it comes to their use of vocab.
My little peanut is developmentally delayed. Mentally retarded is no longer used in the medical field because of its negative connotations. My little guy will receive services of some sort his entire life. My little guy will ride the short bus to school because it is safer for him. My little guy will carry stigmas with him his whole life even though it's not his fault. His chromosome deletion does not make him an idiot. In fact, it's quite the opposite. He works 10 times as hard to learn and do something new! The fact that he is capable of learning even though he is missing information that would make things easier for the "normal" person proves that he is in no way an idiot.
Next time I will smack that guy or whoever in the forehead. Hey, if they can do it to people for not eating their veggies then why can't I do it to people for being rude?!
Saturday, October 11, 2008
Just some news...
We have had a busy couple of weeks here in Plattsburgh!
Sammie finally had his tubes placed and an ABR on September 29. Again I walked with my baby boy down the halls of Fletcher Allen Health Care to an operating room where numerous nurses and doctors were waiting for us. I don't know about other hospitals, but at FAHC you are allowed to go with your loved one to the OR until they are put to sleep. I have been nervous each time I have gone with him...but I want to be the last and first face he sees.. then I was escorted by the surgeon ( a wonderful and bubbly ENT named Dr. Hubble..who must be loved by all his patients!) to my momma (who has been to every major medical event in Sammie's life and probably 98% of his appointments)...I'm not sure this process ever gets any easier though.
Now I've ventured off. Ok...my mom and I went into the PACU to find a sleeping Sammie and we waited patiently for him to wake! He is such a wonderful patient! He woke up and didn't even cry really. He just wanted some food and the nurse let me give him some pediasure! We weren't there for very long. The tube placement went perfectly. Dr. Hubble drained the fluid and placed the tubes and then the Audiologist started to ABR. At first glance the ABR appeared normal but they wanted to check in detail for some certain tones/pitches. The Audiologist called they other day to inform me that Sammie does have some mild hearing loss in certain tones/pitches. He did recommend Sammie see a hearing aide specialist to be fitted for some hearing aides. I have called on that and will know more on Tuesday (darn holidays :) )! So Sammie will be sporting some hearing aides soon. I was really hoping to avoid this issue..and thought we had, but oh well.
Happy news...Sammie will be 2 years old in 11 days!!! I just can't believe it! My little peanut has been through so many things and he is doing great! His PT and I have talked about getting him fitted for a stander! I am very excited! Sammie loves to stand and he has even started taking steps when you put something he wants in front of him! I really think a stander would be the tool we need to get him going! He has been sitting up for much longer and showing more interest in toys! He has certain toys he is totally addicted to. He is obsessed with turning pages and touch and feel cards. In fact I think the only things I have bought him so far for his birthday are books and touch and feel cards that I already opened and played with! Oh well...he doesn't care! Which reminds me that I do want to mention... last year for Sammie's first birthday I had a huge party for him. Many family and friends were there to celebrate his wonderful day! I asked everyone to bring a $5 donations in lieu of presents for the Ronald McDonald house in Burlington Vermont. My home away from home for many many weeks, still is every now and again and also for my sister who has stayed there on numerous occasions for her boys. This year I will have a small gathering for Sammie but invite anyone who would like to donate in honor of Samuel's 2nd birthday to do so at:
Ronald McDonald House Charities of Burlington Vermont
16 South Winooski Avenue
Burlington, Vermont 05401
802-862-4943
Thank you in advance! Last year we were able to raise $231! Not sure where that $1 came from but every dollar helps!
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