It has been just over two weeks since we returned from the GFPD Family Conference. I think about the conference and the families I met in person all the time. I wish that the world was just that - full of families that understand each other and our very unique and special kids, but that just isn't reality...
Reality is what I experienced this morning at MOPS (Mothers of Preschoolers). The majority of people in my life have healthy, typically developing children. I will admit that I had a little breakdown this morning at MOPS, because my mothering experience is very different than those with healthy, typically developing children. I shared with the moms at my table that sometimes I just want to stand up and scream at people and say, "GET OVER YOURSELF! YOUR KID IS HEALTHY!" but I don't. It wouldn't make me feel any better even if I did, I know that. When people talk about building their family or "oops" I want to roll my eyes, because we won't be having any additional biological children and we aren't allowed to have an "oops." While it is true that we may adopt someday, that isn't an easy path and nothing is a guarentee... we have close friends who have had not one but two failed adoptions in the last year......
Reality is that my son has a rare genetic disease that affects every part of him and that we have no idea what life will be like for him or how long he will be with us....
Reality is that more days than not we have a therapy or doctors appointment.......
Reality is that the world doesn't understand.....
So, what have we been doing since arriving back in the "real" world....
Monday, August 8th
-Ethan had an appointment with Dr. Smith. The appointment was actually for his shots, that had to be rescheduled from two weeks earlier when he had a cold. But, he was still sick, so no shots for Ethan. Instead he was put on antibiotic for an ear infection...
Wednesday, August 10th
-We had our monthly playgroup/meeting for parents with children with special needs. I am really enjoying this new group of friends and I am so excited that BabyTALK has adopted our little group into an official BabyTALK program called "Special Connections."
-Ethan had PT and decided that he didn't want to work, at all! Luckily our PT is great and knows Ethan really well so she was still able to evaluate him, knowing what he usually does.... Ethan was being a real stinker...
Saturday, August 13th
-Ethan and I drove up to Clinton and walked in a 5K to raise money for Mitochondrial Disease research. Ethan's little friend, Mable, has a mito disease. Like, PBDs, there are no cures to these rare genetic diseases.
-That afternoon Jeff, Ethan and I went to a wedding and Ethan hung out in the church foyer with his grandpa during the ceremony. They got to see the bride before anyone else! :) Ethan was such a good boy! He especially had fun when I held him during the "chicken dance" at the reception.
Monday, August 15th
-Ethan had his monthly appointment with his dietitian. He weighed in at 21 pounds and 7 ounces and is 30 and 5/8 inches long. We talked at great length about Ethan's eating issues, and his difficulty transitioning to using a cup and more solids.... We are going to keep working on all of this stuff and he is going to start to take a more complete multivitamin to help bridge some of the gap...
Tuesday, August 16th
-Ethan and I went back to BabyTALK for the first time in what seems like ages. It was good to be back.
Wednesday, August 17th
-Ethan and I headed to Urbana to see the Geneticist. Ethan's Geneticisit was at St. John's in Springfield but now he is at Carle. Overall, he said Ethan looks good and that we'll plan on doing more blood work just to monitor everything after Thanksgiving (the last blood work was done at the end of May).
Thursday, August 18th
-Ethan had his OT eval today. At first he wasn't cooperating at all, but luckily he decided to work and show off his skills. Ethan met all of the goals that the OT had set for him from February, so it was time to set new goals for the next six months. OT will probably be increasing from twice a month to once a week starting in September.
Friday, August 19th
-We had MOPS this morning, as I mentioned earlier and this afternoon we have Ethan's one year pictures!
Prayer requests and pictures will follow soon....
Reality is what I experienced this morning at MOPS (Mothers of Preschoolers). The majority of people in my life have healthy, typically developing children. I will admit that I had a little breakdown this morning at MOPS, because my mothering experience is very different than those with healthy, typically developing children. I shared with the moms at my table that sometimes I just want to stand up and scream at people and say, "GET OVER YOURSELF! YOUR KID IS HEALTHY!" but I don't. It wouldn't make me feel any better even if I did, I know that. When people talk about building their family or "oops" I want to roll my eyes, because we won't be having any additional biological children and we aren't allowed to have an "oops." While it is true that we may adopt someday, that isn't an easy path and nothing is a guarentee... we have close friends who have had not one but two failed adoptions in the last year......
Reality is that my son has a rare genetic disease that affects every part of him and that we have no idea what life will be like for him or how long he will be with us....
Reality is that more days than not we have a therapy or doctors appointment.......
Reality is that the world doesn't understand.....
So, what have we been doing since arriving back in the "real" world....
Monday, August 8th
-Ethan had an appointment with Dr. Smith. The appointment was actually for his shots, that had to be rescheduled from two weeks earlier when he had a cold. But, he was still sick, so no shots for Ethan. Instead he was put on antibiotic for an ear infection...
Wednesday, August 10th
-We had our monthly playgroup/meeting for parents with children with special needs. I am really enjoying this new group of friends and I am so excited that BabyTALK has adopted our little group into an official BabyTALK program called "Special Connections."
-Ethan had PT and decided that he didn't want to work, at all! Luckily our PT is great and knows Ethan really well so she was still able to evaluate him, knowing what he usually does.... Ethan was being a real stinker...
Saturday, August 13th
-Ethan and I drove up to Clinton and walked in a 5K to raise money for Mitochondrial Disease research. Ethan's little friend, Mable, has a mito disease. Like, PBDs, there are no cures to these rare genetic diseases.
-That afternoon Jeff, Ethan and I went to a wedding and Ethan hung out in the church foyer with his grandpa during the ceremony. They got to see the bride before anyone else! :) Ethan was such a good boy! He especially had fun when I held him during the "chicken dance" at the reception.
Monday, August 15th
-Ethan had his monthly appointment with his dietitian. He weighed in at 21 pounds and 7 ounces and is 30 and 5/8 inches long. We talked at great length about Ethan's eating issues, and his difficulty transitioning to using a cup and more solids.... We are going to keep working on all of this stuff and he is going to start to take a more complete multivitamin to help bridge some of the gap...
Tuesday, August 16th
-Ethan and I went back to BabyTALK for the first time in what seems like ages. It was good to be back.
Wednesday, August 17th
-Ethan and I headed to Urbana to see the Geneticist. Ethan's Geneticisit was at St. John's in Springfield but now he is at Carle. Overall, he said Ethan looks good and that we'll plan on doing more blood work just to monitor everything after Thanksgiving (the last blood work was done at the end of May).
Thursday, August 18th
-Ethan had his OT eval today. At first he wasn't cooperating at all, but luckily he decided to work and show off his skills. Ethan met all of the goals that the OT had set for him from February, so it was time to set new goals for the next six months. OT will probably be increasing from twice a month to once a week starting in September.
Friday, August 19th
-We had MOPS this morning, as I mentioned earlier and this afternoon we have Ethan's one year pictures!
Prayer requests and pictures will follow soon....
Comments
Post a Comment