Today is International MPS Awareness day! It's a day we try to drive awareness, raise money, run races, and spread our messages about the impact of Mucopolysaccharidosis (MPS) on children, adults and families. We show you the real, raw details of how this effects our lives every day and how it takes our loved ones away. We ask you to wear purple to honor this day.
Really, is it any different than any other day?
We do this every day of our lives. Sharing our story, showing our strength, being real about our concerns and trying the very best we can to make MPS a distant memory. This is every day for us. Reflecting upon this last year, it's really had it's ups and downs and some challenges that looked insurmountable but proved in the end to be something we'd overcome. Something you may not see every day is how you make a difference in our lives and how powerful that really is; on this day let us show you the impact you've had on our lives.
You Follow Everyone
We cannot tell you how elated we are when we go to "like" another MPS family's Facebook page, website, tweet, update, blog, Instragram pic, etc. and we see your name listed there too. We love when we see you've commented on someone else's page. It warms our hearts to see you support not only us but the whole MPS community. I know it means a lot to everyone. Your support is powerful and meaningful to all of us. You never know when the person on the other end needs that boost or support. What you do may mean the world to them. Thank you for your support.
I look at our blog analytics often and it's really amazing how many people support us. I can also tell you that 1 "like" really means hundreds of people have seen your post, read it, or viewed your video. Those supporters may not feel comfortable liking it or weighing in on it, and some do. No matter what, these stories are reaching a lot of people.
We're so appreciative for this small, tight circle that keeps us going every day.
Your Words are Meaningful
The most moving thing about having a global community support us is what you say. Sometimes we are certain you don't know what to say because you just couldn't fathom what it's like to have MPS. I think sometimes you are very intuitive about when we need support and when we don't. I (Amy) am personally moved by emails I get, texts or messages telling me that I am a good mother, I am so positive, I always find the silver lining, my strength is inspiring, I am so funny, people are lucky to have me, etc. I am not fishing for these comments. I am being myself. I wish everyone could get this much encouragement in their own lives. People tell Dan he's an amazing Dad. It's really a surreal situation. I truly believe you'd do the same given this situation.
You've Taken Action
We know how hard it is to give these days. Living is costly, making more is rare and still you find some funds to send our way or to another MPS fundraiser. Today I was sitting in our kitchen thinking of every person who donated to us. Friends, family, fro-workers (Friend Coworkers), teachers literally someone from many facets of our lives. We cherish everything you send our way. Gene Therapy has to happen. The mountain of money, commitment, bravery, and support it's going to take to see it come to fruition is intimidating to say the least. It's going to take a cast iron stomach and the wallet of the world to make it happen. It's possible though, and it's potential effects even more motivating and positive. So that's all that matters. Without fund raising and your support this wouldn't even be possible. Thank you. We've been coached before to not talk about the cost of things and exacerbate the money as an obstacle. The truth is...it is an obstacle. One that needs focus to overcome. Ask yourself how much would you spend to save your life or the life of a loved one?
You've personally supported the National MPS Society, Raising Rare Boys, The Hunter Syndrome Foundation, or one of the other fundraising projects the other MPS families have launched. Thank you so much.
You've colored for us. So many of you have sent us pictures for our kids and we love them! They're a bright spot in our day and a visual show of support.
There are still so many of you who do not know how to help and there are many of you who want to do more. This year we'll do more but please know what you've done so far is amazing.
On this day of awareness, we want to sincerely thank you for being aware, for being with us, for helping us and being so committed to our family.
The Cherrstroms
Sunday, May 15, 2016
Wednesday, May 4, 2016
Motherhood
Being a mother brings me the greatest joy.
I always wanted to be a mother. I didn't rush into it. This is a very, very individual choice. I went to college, made deep friendships, cultivated a career, married my husband, and had a ton of fun. I breathed in my life, and lived it fully. Then I became a mother and had even more fun. No kidding. I honestly feel like being a mother has brought me the greatest joy in my life.
I love being a mother. I love finding the best in you or figuring out how to know you better than you know you. I'll show you your innate abilities, your gifts, your heart, your mind and how wonderful it all is. You're here for a purpose, and it's a fun road to self discovery.
I love being a mother because it shows me how imperfect I am. Being a mother shows me how ridiculous I can be, what I am bad at, and clarifies what really matters. I really could care less if my bed is ever, ever made. Who cares!!! Sometimes as a mother I am tired, snippy or chronically messy looking. I feel like I have 3 looks, preheat, warm, or hot (like an oven) and all 3 take a lot of work. Being a mother makes me search to find my looks and my own personality on a regular basis.
Being a mother has taught me what I really want to work hard for and what I want to be slightly lazy about...like I don't want to pick out my own clothes anymore. I want a service to decide what I am wearing every day, and dress me based on Big Data, questionnaires algorithms, and a great stylist armed with all of that data. I also want to eat like a robot but I want it to taste really good. I want meals that I don't prepare myself and that keep my body extremely fit. Motherhood helps you know what you want and what you don't want. I don't want clothes with stains or to be embarrassed in the super market because I am wearing yesterday's makeup because yesterday was a good day. Motherhood really helps you own failure and embrace it. Motherhood knows how to make you feel really insecure and also feel really confident, and sometimes you're inse-confident. Motherhood helps you be both an extrovert and an introvert maybe even in the same hour. Sometimes you're too direct and sometimes not direct enough.
I used to be the mother who would read how to make you the "happiest" kid on the block but now I strive for one of the happy kids on the block.
Motherhood will embarrass you like the time I picked you up from daycare and couldn't tell which one was you because you were in a different outfit, but I love you! By my second child, I would walk into your room and scream out your name and look for the one who smiled or kicked. Or when you were waving to me on the baseball field just last week and I didn't know that was you (everyone is wearing the same thing and a hat), and someone else asked me if that was my kid and I said where? Most importantly I was there and you knew it. Motherhood keeps you humble and can make the smartest person look dumb, and the dumbest person look smart.
If Motherhood was a house, it might have nice curb appeal, tidy bushes but the house might be burning down on the inside. Sometimes the house is untidy on the outside, shutters falling down, in need of paint, but on the inside it's beautiful, and on the fortunate occasion it's both.
Being a mother has taught me about emotions that I didn't even know existed. I can give the best hugs. Sometimes I think I feel your feelings for you. With the burden of Hunter Syndrome, I am alongside you. Sometimes I carry more fear than you do, more understanding than you do, and some of your pain. I cry when really disappointed or frustrated but I am smiling most of the time. Motherhood has taught me what being brokenhearted is, what the greatest joy is, how to worry, and when not to worry. Most of all it's taught me about me. Motherhood has brought about a sense of peace and calm. No matter what happens in the world, I am always a Mother.
Motherhood means I'm a good listener. It means I can hear things even when I am not supposed to... It also means you melt my heart when you say, " I love you sweetie". Motherhood has taught me that your brother communicates deepest love, his feelings, and grievances without words. Motherhood has taught me to connect our hearts and minds where words are absent.
Motherhood means you're never alone even when you want to be alone. Motherhood teaches you you're not the only one but sometimes you can't see the others. Motherhood sometimes comes with loneliness, and sometimes you feel you're in a crowd of moms.
I also love being a mother because it shows me how amazing I can be, how unique I am. You're raising a person. When Motherhood shows you your successes you revel in them, and when we're all happy and relatively healthy it's comforting. Motherhood has allowed me to experience caring deeply for another, nourishing, protecting, sometimes letting go, and making decisions that greatly impact another's life.
Motherhood is giving you everything, giving you nothing, and sometimes making you understand how to work for something. Motherhood is about teaching gratitude.
Motherhood has taught me I can do so much but I always feel like I am doing so little, or doing the right thing one moment and the wrong thing the next.
Motherhood is physical. It's balancing your inner "Helga" with your outer "Holly Golightly". I love running after you. I love running along side you. I will always remember running with you. Motherhood has taught me that you can break up an unfair wrestling match in the living room but you might burn the bacon in the process. I no longer wear heels when I am with you but look forward to that rare date night when I can. I used to have really awesome shoes. I miss them.
We're all making this up. Motherhood. Fatherhood, Parenthood. No one really knows what they're doing but the good ones are doing the best they can.
Mother's Day is just that, a celebration of people who are doing the best they can! I love you boys! I love your giggles. I just love you! Thank you for giving me the gift of motherhood.
Happy Mother's Day!
Your Mom,
Amy
I always wanted to be a mother. I didn't rush into it. This is a very, very individual choice. I went to college, made deep friendships, cultivated a career, married my husband, and had a ton of fun. I breathed in my life, and lived it fully. Then I became a mother and had even more fun. No kidding. I honestly feel like being a mother has brought me the greatest joy in my life.
I love being a mother. I love finding the best in you or figuring out how to know you better than you know you. I'll show you your innate abilities, your gifts, your heart, your mind and how wonderful it all is. You're here for a purpose, and it's a fun road to self discovery.
I love being a mother because it shows me how imperfect I am. Being a mother shows me how ridiculous I can be, what I am bad at, and clarifies what really matters. I really could care less if my bed is ever, ever made. Who cares!!! Sometimes as a mother I am tired, snippy or chronically messy looking. I feel like I have 3 looks, preheat, warm, or hot (like an oven) and all 3 take a lot of work. Being a mother makes me search to find my looks and my own personality on a regular basis.Being a mother has taught me what I really want to work hard for and what I want to be slightly lazy about...like I don't want to pick out my own clothes anymore. I want a service to decide what I am wearing every day, and dress me based on Big Data, questionnaires algorithms, and a great stylist armed with all of that data. I also want to eat like a robot but I want it to taste really good. I want meals that I don't prepare myself and that keep my body extremely fit. Motherhood helps you know what you want and what you don't want. I don't want clothes with stains or to be embarrassed in the super market because I am wearing yesterday's makeup because yesterday was a good day. Motherhood really helps you own failure and embrace it. Motherhood knows how to make you feel really insecure and also feel really confident, and sometimes you're inse-confident. Motherhood helps you be both an extrovert and an introvert maybe even in the same hour. Sometimes you're too direct and sometimes not direct enough.
I used to be the mother who would read how to make you the "happiest" kid on the block but now I strive for one of the happy kids on the block.
If Motherhood was a house, it might have nice curb appeal, tidy bushes but the house might be burning down on the inside. Sometimes the house is untidy on the outside, shutters falling down, in need of paint, but on the inside it's beautiful, and on the fortunate occasion it's both.
Being a mother has taught me about emotions that I didn't even know existed. I can give the best hugs. Sometimes I think I feel your feelings for you. With the burden of Hunter Syndrome, I am alongside you. Sometimes I carry more fear than you do, more understanding than you do, and some of your pain. I cry when really disappointed or frustrated but I am smiling most of the time. Motherhood has taught me what being brokenhearted is, what the greatest joy is, how to worry, and when not to worry. Most of all it's taught me about me. Motherhood has brought about a sense of peace and calm. No matter what happens in the world, I am always a Mother.
Motherhood means I'm a good listener. It means I can hear things even when I am not supposed to... It also means you melt my heart when you say, " I love you sweetie". Motherhood has taught me that your brother communicates deepest love, his feelings, and grievances without words. Motherhood has taught me to connect our hearts and minds where words are absent.
Motherhood means you're never alone even when you want to be alone. Motherhood teaches you you're not the only one but sometimes you can't see the others. Motherhood sometimes comes with loneliness, and sometimes you feel you're in a crowd of moms.
I also love being a mother because it shows me how amazing I can be, how unique I am. You're raising a person. When Motherhood shows you your successes you revel in them, and when we're all happy and relatively healthy it's comforting. Motherhood has allowed me to experience caring deeply for another, nourishing, protecting, sometimes letting go, and making decisions that greatly impact another's life.
Motherhood is giving you everything, giving you nothing, and sometimes making you understand how to work for something. Motherhood is about teaching gratitude.
Motherhood has taught me I can do so much but I always feel like I am doing so little, or doing the right thing one moment and the wrong thing the next.
Motherhood is physical. It's balancing your inner "Helga" with your outer "Holly Golightly". I love running after you. I love running along side you. I will always remember running with you. Motherhood has taught me that you can break up an unfair wrestling match in the living room but you might burn the bacon in the process. I no longer wear heels when I am with you but look forward to that rare date night when I can. I used to have really awesome shoes. I miss them.
We're all making this up. Motherhood. Fatherhood, Parenthood. No one really knows what they're doing but the good ones are doing the best they can. Mother's Day is just that, a celebration of people who are doing the best they can! I love you boys! I love your giggles. I just love you! Thank you for giving me the gift of motherhood.
Happy Mother's Day!
Your Mom,
Amy
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