So today I will be talking from my point of view as a mama and caregiver. There are so many aspects of of being a mom of a child with PWS that I could talk about, but then I’d probably have a novel. Next week we will have an entire post on how you can help and support us.
Not only is this PWS awareness month, but this week is Eosinophil Awareness week. I’ve been trying to think of the best way to express my feelings on all of this- a rollercoaster is probably the best. In the past week, we have had hard days and wonderful days and some mixed together. As you have seen during these blog posts is that Kemett is doing great! Yes, he is behind in milestones and not as strong as his peers, but from what we were told, he is beating expectations! I am so proud of him, everyday, for what he is accomplishing and doing.
This does not mean that I don’t worry. I worry every day about him and how we are doing as parents to raise him. Last week he had two hard days at school. I was so upset, and frustrated because I did not know what to do to make things better. I also never know if this is typical toddler behavior, or are we on the verge of major behavioral issues/food issues, etc. Monday after school, I found out he had a fever- well that solved part of the mystery. When Kemett is exhausted or getting sick, he tends to act out more and get emotional. Wednesday after I found out he ate a part of another kids sandwich, which contained allergens, I thought I was going to lose it. We work so hard with him on not sharing, special tummy etc. I texted my PWS mom friend and mentor, and she talked me off the ledge. She assured me that typical kids do this and that her son had been having a hard day too and might be getting sick. But we never know. We both agreed that it is scary, the not knowing. It’s hard to get too excited when things seem to be going well, because something always happens that makes it hard for you to get comfortable.
On days like those, I feel lonely. I stay strong every day for Kemett, and try not to think about the future. But as he gets older, it’s hard not to think about. I know we will deal with them as they come and figure it out as a family. I think my biggest fear is Kemett and our family being excluded, or losing our support systems. You may think, what? We’d never do that, but you don’t know. Or if Kemett’s food seeking/behaviors get to be out of control, we may stop coming around. I’m not sure what I’d do without our support system. They keep us going. They may not completely understand, because that’s hard but they try. They ask questions, stay on top of the latest with Kemett, and ask how we are doing.
I am also lonely because being a mom is lonely, and then top that with medical issues, it makes it hard to make friends. I’m sure most people think we are flakey, or are never available to play or get together. And the latter is true. Kemett has 7 therapies a week, sees 12 specialists, has to get weighed and measured monthly, blood work every other month, and right now is in school 2 days a week. When we have a day off, oftentimes, I just want to stay home and let Kemett play and be free! I’m often too exhausted to go to Mom’s nights out, and just want to get in bed after Kemett is asleep and catch up on a show with Andrew. I rarely get to see my own family or have play dates with my neices/nephews, so please try not to be offended. I want to connect with other mom’s and build a village. My village right now is family and PWS families. They get it. I want people we meet to ask questions and want to get it, but I know it’s a lot. I know it makes some people uncomfortable so they just ignore it or avoid us. For me, I will be better able to build a friendship with someone if I know they are trying to get it and keep Kemett safe. There are definitely people out there who try to get it, and are empathetic, but then we go back to the beginning of them probably thinking we are flakey. Please be patient with us. Please ask questions and listen when we are asking for something or telling you about something. As you can all see, we are so open with what is going on in our lives, and past that we are pretty fun people to be around. Just ask our friends and family.
I want to end this on a positive note. We are so thankful for the support, comments, questions of all of you reading this blog. We know you are taking time out of your lives to learn about our son and keep up with what is going on in a big way. That means more than you will ever know. This week we will blog about Kemett’s diet, rules we have in our house around food, and how you can include Kemett in gatherings/playdates, etc. Next week we will have a post on how you can help and support our family. If you ever have questions, please reach out. Or just reach out to see how we are doing. It brightens our day.
Kemett is amazing- I could not have asked for a cooler, smarter, brighter kid. I love seeing him grow and learn on a daily basis, and I have no doubt he will go on to do great things. We will talk about FPWR next week and the research they are doing to make these dreams possible for Kemett.
I also want to throw a shout out to Andrew, the best partner, husband, dad that a wife, partner, mother could ask for. He loves Kemett more than anything, and does everything he can to help him grow, learn about cool music, pop culture, and all the things that make Andrew amazing. He is teaching him to be a kind, caring, loving person. He and I are different people, which is good because I need someone to help me stay rationale and not worry too much. He is my rock and my support and I’m not sure what I’d do without him.
Thank you as always for your support and for reading our blog! Below are pictures from a family vacation we just took. Tomorrow we will discuss EoE, so please let us know if you have questions!