This week we attended the Sickle Cell Disease Associate of Illinois' monthly support group for the first time. I found out about SCDAI before we left for CA a few months back, but with all the rush to prepare to go and then being gone we hadn't had a chance to make a meeting yet. It was a bit daunting to make the meeting. It's about forty-five minutes away in an area of the city we aren't familiar with, and thanks to some terrible Google map directions we did get lost trying to get there, and therefore we were embarrassingly late to our first meeting. Jeff had to leave work pretty early in order for us to make it, and we had to keep the kids out passed bedtime. Also, I had a sneaking suspicion that our family might not be the norm, but, when are we ever? That said, I am so thankful that we went. The meeting was excellent, and I think that this group will be a real blessing to our family in the future.
Our original plan was to drive out to the area where the meeting was located, find a place to eat, have dinner, then go to the meeting as a family. However, Jeff got off work late, traffic was slow due to construction and rain, we got lost, and so Kenny and I went to the meeting while Jeff took the boys to get something to eat. I think that we may have looked a bit out of place. The moderator asked if I was surprised when the newborn screening came back and my husband and I found out we were carriers (white people can carry the gene for sickle cell, although it is rare). So, I shared a bit of our story. Of course we were surprised to learn that Nic had sickle cell, but we aren't carriers. The moderator asked some great questions and did not hesitate to put me, or anyone else, on the spot, and I thought it was a great tactic to get people to share more specific things.
The main topic of discussion was a problem someone was having getting the medical care that they need, and it was very sad to hear about the struggles that people with sickle cell have when they require a great deal of costly medical care but are not able to work due to frequent hospitalization/pain. Next time we will be talking about how racism affects medical care.
The meeting was also difficult. Listening to people discuss all of the medications they take to manage their symptoms and all the surgeries they have had...that's hard. I hate to think of Nic having so many of his organs removed or transplanted, or having wounds that won't heal, or having to wear a bag. It's one thing to read about that being his future in a book, and another to see people actually having to live with the problems he will potentially have. I know that it is better for us to be aware of the coming medical issues, but in some ways ignorance really is bliss.
That said, it was great to meet other caregivers of children with sickle cell disease and to meet individuals who have SCD. There was one man there with SS (Nic's type) who is 56 years old. That is amazing. He seems like a very inspiring man, not just because he is beating the odds in terms of lifespan but because he apparently has led a very active life and aspires to show other young men with SCD that they can do the same. That is the type of role model that we need for our family. The other moms were very knowledgeable about SCD and I know that I can learn a lot from their experience advocating for a child with SCD.
Our original plan was to drive out to the area where the meeting was located, find a place to eat, have dinner, then go to the meeting as a family. However, Jeff got off work late, traffic was slow due to construction and rain, we got lost, and so Kenny and I went to the meeting while Jeff took the boys to get something to eat. I think that we may have looked a bit out of place. The moderator asked if I was surprised when the newborn screening came back and my husband and I found out we were carriers (white people can carry the gene for sickle cell, although it is rare). So, I shared a bit of our story. Of course we were surprised to learn that Nic had sickle cell, but we aren't carriers. The moderator asked some great questions and did not hesitate to put me, or anyone else, on the spot, and I thought it was a great tactic to get people to share more specific things.
The main topic of discussion was a problem someone was having getting the medical care that they need, and it was very sad to hear about the struggles that people with sickle cell have when they require a great deal of costly medical care but are not able to work due to frequent hospitalization/pain. Next time we will be talking about how racism affects medical care.
The meeting was also difficult. Listening to people discuss all of the medications they take to manage their symptoms and all the surgeries they have had...that's hard. I hate to think of Nic having so many of his organs removed or transplanted, or having wounds that won't heal, or having to wear a bag. It's one thing to read about that being his future in a book, and another to see people actually having to live with the problems he will potentially have. I know that it is better for us to be aware of the coming medical issues, but in some ways ignorance really is bliss.
That said, it was great to meet other caregivers of children with sickle cell disease and to meet individuals who have SCD. There was one man there with SS (Nic's type) who is 56 years old. That is amazing. He seems like a very inspiring man, not just because he is beating the odds in terms of lifespan but because he apparently has led a very active life and aspires to show other young men with SCD that they can do the same. That is the type of role model that we need for our family. The other moms were very knowledgeable about SCD and I know that I can learn a lot from their experience advocating for a child with SCD.
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1 comment:
What a great resource for you guys.
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