So after today's events I decided I needed a little outlet to let go some of my pain so here goes, take it how you will. For those of you that didn't know I went to our local farmers market today to raise awareness and funds for the Cystic Fibrosis Foundation. I was looking forward to this for the past month because I figured not only do I get to tell everyone about my awesome Jack, but I also get to talk about my biggest passion (next to being Jack's momma of course) finding a cure for Cystic Fibrosis.
I wouldn't have always been so eager to talk to the public about CF but after I went around door to door in my neighborhood I got an all around positive vibe from everyone I met. Genuine good hearted people. So I figured surely there must be more of these people out there just as excited to find a cure as I was and I couldn't wait to meet them.
I didn't count on a few key things however, the first being that the table I was planning to use for my booth didn't fit in my car but I shrugged it off and instead settled on a table that could've easily been mistaken for a TV tray. I was still excited to spread awareness. Then of course I realized I didn't have a fold up chair so I took one of my kitchen chairs (I'm telling you I must've looked real professional) I was still in the groove even when I got to the market and had trouble setting up my pop-up tent. To which I might add made me think back to Psych class where we learned about the group theory (how the more people standing around, the less likely someone is to help a person in need) and I found it a little humorous. I knew people were watching but no one offered a helping hand (all able bodied people mind you). Finally this little old man, he must have been pushing 86, came over and helped me set it up. He was so sweet :). He even stood on a chair to fully extend the tent for me after my attempts failed. Then I sat, and sat, and sat with a smile on my face greeting people that chanced to walk by. They didn't stop until they would reach the next booth beside me or across from me. The first lady that came to me brought her daughter along and she told me in a matter-of-fact tone of how her uncles 5 children had CF it must've been 30 years ago you know before they lived long (As if she was talking about a runt in a litter of puppies) Then she went on to ask her daughter if she knew what it was and than said well I am sure you can tell her all about it. That probably shouldn't have bothered me as much as it did but the fact that she was my first visitor and I was so excited to show her how cute he was and I felt like I more or less hit a brick wall instead of getting across to her the need for a cure.
I feel like I should take this time to let you in on a few unspoken rules in the CF community and probably any other issue as delicate as CF. Rule #1 Please use a bit more sensitivity when talking about the mortality of my son it may not be a big deal to you but it is to me. This means don't show me the same amount of sensitivity that you would had we been talking about the overgrown weeds in our field that we probably 'should have mowed down a week ago'. Rule #2 If I don't know you don't ask me how my son is 'doing'. When people ask me my first response is always 'good'. First of all I'm not a doctor nor do I claim to be one. When you ask me 'how is he doing' it makes me feel like you are looking for me to tell you that he is doing 'good' which therefore discredits the severity of the disease in your mind because I don't tell you everything going on in our day that makes him look 'good'. That if we didn't have the technology we do today I guarantee he wouldn't look as 'good' but it is still something that could always spiral down and I am scared shitless of him ever even having a hospital stay like so many other CFer's I know. Rule #3 Don't tell me how HORRIBLE the disease is and say 'good luck' and walk away with a smile on your face please!
Having a special needs child is such a humbling experience that makes you take nothing for granted and I guess when I saw people bringing their kids into the farmer's market that were around Jack's age seeing how relaxed and happy and clueless they were I was pretty jealous. Whenever I am with Jack I always maintain a happy look as best I can but I am also always scouting every area out (is that person smoking, what if that kid didn't wash his hands after he went to the bathroom, that person is coughing are they sick, what do they have is it contagious?) Don't get me wrong I am happy that their children are healthy but the fact that they just walked right on by leaving me in the dust with my 'terminally ill' son that if they took a second to get to know they would love him and learn something and possibly help save his life.
Lots of love and thank you for allowing me the time to express my thoughts
I wouldn't have always been so eager to talk to the public about CF but after I went around door to door in my neighborhood I got an all around positive vibe from everyone I met. Genuine good hearted people. So I figured surely there must be more of these people out there just as excited to find a cure as I was and I couldn't wait to meet them.
I didn't count on a few key things however, the first being that the table I was planning to use for my booth didn't fit in my car but I shrugged it off and instead settled on a table that could've easily been mistaken for a TV tray. I was still excited to spread awareness. Then of course I realized I didn't have a fold up chair so I took one of my kitchen chairs (I'm telling you I must've looked real professional) I was still in the groove even when I got to the market and had trouble setting up my pop-up tent. To which I might add made me think back to Psych class where we learned about the group theory (how the more people standing around, the less likely someone is to help a person in need) and I found it a little humorous. I knew people were watching but no one offered a helping hand (all able bodied people mind you). Finally this little old man, he must have been pushing 86, came over and helped me set it up. He was so sweet :). He even stood on a chair to fully extend the tent for me after my attempts failed. Then I sat, and sat, and sat with a smile on my face greeting people that chanced to walk by. They didn't stop until they would reach the next booth beside me or across from me. The first lady that came to me brought her daughter along and she told me in a matter-of-fact tone of how her uncles 5 children had CF it must've been 30 years ago you know before they lived long (As if she was talking about a runt in a litter of puppies) Then she went on to ask her daughter if she knew what it was and than said well I am sure you can tell her all about it. That probably shouldn't have bothered me as much as it did but the fact that she was my first visitor and I was so excited to show her how cute he was and I felt like I more or less hit a brick wall instead of getting across to her the need for a cure.
I feel like I should take this time to let you in on a few unspoken rules in the CF community and probably any other issue as delicate as CF. Rule #1 Please use a bit more sensitivity when talking about the mortality of my son it may not be a big deal to you but it is to me. This means don't show me the same amount of sensitivity that you would had we been talking about the overgrown weeds in our field that we probably 'should have mowed down a week ago'. Rule #2 If I don't know you don't ask me how my son is 'doing'. When people ask me my first response is always 'good'. First of all I'm not a doctor nor do I claim to be one. When you ask me 'how is he doing' it makes me feel like you are looking for me to tell you that he is doing 'good' which therefore discredits the severity of the disease in your mind because I don't tell you everything going on in our day that makes him look 'good'. That if we didn't have the technology we do today I guarantee he wouldn't look as 'good' but it is still something that could always spiral down and I am scared shitless of him ever even having a hospital stay like so many other CFer's I know. Rule #3 Don't tell me how HORRIBLE the disease is and say 'good luck' and walk away with a smile on your face please!
Having a special needs child is such a humbling experience that makes you take nothing for granted and I guess when I saw people bringing their kids into the farmer's market that were around Jack's age seeing how relaxed and happy and clueless they were I was pretty jealous. Whenever I am with Jack I always maintain a happy look as best I can but I am also always scouting every area out (is that person smoking, what if that kid didn't wash his hands after he went to the bathroom, that person is coughing are they sick, what do they have is it contagious?) Don't get me wrong I am happy that their children are healthy but the fact that they just walked right on by leaving me in the dust with my 'terminally ill' son that if they took a second to get to know they would love him and learn something and possibly help save his life.
Lots of love and thank you for allowing me the time to express my thoughts
Hang in there Mom! You're doing a great job. Our family has come to the conclusion that you can't control the world and, really, we can only control Riley to an extent. We have to think about our surroundings all the time but really can't control them. WE can stay or go. And only control what Riley does, for now... They need to live life, YOU need to live life too! I can't live being a crazy germahobe/worry wart anymore. (trust me I do still, to an extent) They're going to get sick :( and they'll get better too. Be strong, don't waste your energy or time on feeble mindedness. Just think, you might have stirred something in that little girls head!?
ReplyDeleteMuch love! And I'm here for ya! :)
Thank you for saying what so many of us CF Mommas think and feel. We are in the same boat, sometimes it feels like a ride on the Deadliest Catch, others like your on a Carnival Cruise. Whatever the journey the shore is along the horizon and a Cure will be found. Keep the strength. Us mommas need to stick together. Power in numbers right.
ReplyDeleteMuch Love And Cyber Hugs,
Becky, Danika's Mom