When my buddy was born, I didn't know anyone who had a child with Down syndrome. I didn't have a smart phone or even a laptop at the hospital with me. I was desperate for any information and my pleas were answered in the most perfect way.
Michael's colleague had a daughter with Down syndrome and his wife called me. She was so amazing - because she had been there and was far out of that dark tunnel and knew that life loving a child with Ds was wonderful.
She was so patient with me, just talking while I blubbered on the other end barely able to keep it together. I can remember holding my buddy and caressing his face while she told me it was OK to grieve for the loss of who I thought he was going to be. She assured me that I would love this life with him in it. She talked about how excited she gets when she hears that someone had a baby with Ds.
She just had all the right words. I thanked her once for being there for me - of course I started crying but it happens to the best of us.
I got the call I have been waiting for the other night. An old friend just had a baby and surprise, he has Down syndrome. She facebook messaged me and I sent her my phone number and we talked right away. It felt so good to be the one on the other end of the phone. (and she sounded just like she did in High School - the last time we talked)
I can remember every emotion from my buddy's birth. But I also remember every time he drops what he is doing just to come over to me because he needs to give me a hug and a kiss. I know how proud of him I am. I have seen all that he can accomplish. I see how his peers want to play with him and don't care that he can't talk back to them.
I really hope I was able to help my friend and reassure her that life with her son will be exactly how it is supposed to be. She may have lost that imagined son, but she has gained so much more.
March 5, 2013
February 23, 2013
music
I love the yin and yang of life. Every time I feel like my buddy isn't making significant progress, he goes and proves me wrong. We signed up for a music therapy class through the CT Down syndrome Congress. Wouldn't you know, my buddy was a model student.
He sat. That deserves its own special recognition. He sat. For the whole hour long class. He followed directions - playing the instrument quietly, fast, high, etc. He answered questions. He danced, spun and drummed when appropriate. My buddy could not have done any better. I was able to attend the class with all three kids and not be stressed when we left.
I love being able to see him progress and mature. While I am still secretly petrified about my buddy starting Kindergarten in the fall, I will try and not think of that now and just celebrate how awesome he was today.
He sat. That deserves its own special recognition. He sat. For the whole hour long class. He followed directions - playing the instrument quietly, fast, high, etc. He answered questions. He danced, spun and drummed when appropriate. My buddy could not have done any better. I was able to attend the class with all three kids and not be stressed when we left.
I love being able to see him progress and mature. While I am still secretly petrified about my buddy starting Kindergarten in the fall, I will try and not think of that now and just celebrate how awesome he was today.
February 13, 2013
party
We had a fun Valentine's party yesterday. As the kids get older, it gives the moms more of an opportunity to talk while our kids are able to play on their own. Plus my living room is super kid friendly and small so not to much chasing is required.
I was thrilled that my buddy actually participated in the party. He spent a few minutes coloring his craft and actually sat and ate snack with all the kids. My buddy greeted friends with a hug and a kiss - whether they wanted one or not.
As our friends gain independence and maturity, the gap between my buddy and his peers widens. My buddy was the only one at the party to tackle someone to the ground and make them cry. He was the only one grabbing toys out of other kids hands then throwing himself on the ground after I made him give them back. No one else kicked a baby and made them cry. He threw a fit when I gave him goldfish instead of pretzels. Pretty typical behavior for my buddy.
Wouldn't you know one of the kids left the bathroom open and my buddy snuck in there. When I went in to get him out, he sat on what he though was the toilet seat. The look of surprise on my buddy's face was priceless as he sunk inside the potty soaking his pants and diaper in toilet water.
Luckily I have some very understanding friends who have known my kids their whole life. I'm not sure if they even notice my buddy's antics the way I do. But if they do notice they most certainly do not judge and for that I am grateful.
I was thrilled that my buddy actually participated in the party. He spent a few minutes coloring his craft and actually sat and ate snack with all the kids. My buddy greeted friends with a hug and a kiss - whether they wanted one or not.
As our friends gain independence and maturity, the gap between my buddy and his peers widens. My buddy was the only one at the party to tackle someone to the ground and make them cry. He was the only one grabbing toys out of other kids hands then throwing himself on the ground after I made him give them back. No one else kicked a baby and made them cry. He threw a fit when I gave him goldfish instead of pretzels. Pretty typical behavior for my buddy.
Wouldn't you know one of the kids left the bathroom open and my buddy snuck in there. When I went in to get him out, he sat on what he though was the toilet seat. The look of surprise on my buddy's face was priceless as he sunk inside the potty soaking his pants and diaper in toilet water.
Luckily I have some very understanding friends who have known my kids their whole life. I'm not sure if they even notice my buddy's antics the way I do. But if they do notice they most certainly do not judge and for that I am grateful.
February 6, 2013
funk
I have reached that time after having a baby when the I-don't-know-who-I-am funk is creeping in. It's a funny thing. Rara is starting to get more independent. She can sit up and play by herself for an extended period. She can feed herself a hunk of rice cake. Yet, she still needs me every few hours and no one else will do. I love that I can offer her nature's perfect baby food, free of charge, fresh from the tap. But I would like my body back at some point and I still have some time to go.
I always say that I want to get away and have time for just me but whenever the opportunity presents itself, I find some reason or another not to leave the kids. Really I just want an hour. But what would I do with that hour? I find such fulfillment in being a Mom. It has answered many of the Who I am questions. But every so often I hit the funk.
This funk came way before children ever did. I never had that 'thing' that I was super good at and was known for. I could not for the life of me choose a major in college. I bopped between hobbies. I played a sport here or there. Nothing really stuck.
Rara is still brutal at night - waking up 4 times a night to eat. She is so darn distracted during the day that all I can get her to do is nibble a little here and there. At night she chows. And I am so tired that the thought of night weaning her seems like so much work when I am in the most need of the easy way out. I did work really hard on getting her to fall asleep on her own. She (at the moment) is just eating and going right back to sleep.
So I find myself unable to stay awake past dark, quite exhausted and in a rut. I had a little fun recently crafting. Monkey bear talked me into having a Valentine's Party for her friends she never gets to see anymore. I pulled out the ol' glue gun after a trip to the craft store and I've enjoyed it.
I tried to ask my husband what he thought I should do with myself, but that didn't go well. I asked my best friend and she had a great idea, but it requires a lot more time than I am able to give. Perhaps I need to visit a psychic. Or maybe just a month of good sleep and the answer will appear.
I always say that I want to get away and have time for just me but whenever the opportunity presents itself, I find some reason or another not to leave the kids. Really I just want an hour. But what would I do with that hour? I find such fulfillment in being a Mom. It has answered many of the Who I am questions. But every so often I hit the funk.
This funk came way before children ever did. I never had that 'thing' that I was super good at and was known for. I could not for the life of me choose a major in college. I bopped between hobbies. I played a sport here or there. Nothing really stuck.
Rara is still brutal at night - waking up 4 times a night to eat. She is so darn distracted during the day that all I can get her to do is nibble a little here and there. At night she chows. And I am so tired that the thought of night weaning her seems like so much work when I am in the most need of the easy way out. I did work really hard on getting her to fall asleep on her own. She (at the moment) is just eating and going right back to sleep.
So I find myself unable to stay awake past dark, quite exhausted and in a rut. I had a little fun recently crafting. Monkey bear talked me into having a Valentine's Party for her friends she never gets to see anymore. I pulled out the ol' glue gun after a trip to the craft store and I've enjoyed it.
I tried to ask my husband what he thought I should do with myself, but that didn't go well. I asked my best friend and she had a great idea, but it requires a lot more time than I am able to give. Perhaps I need to visit a psychic. Or maybe just a month of good sleep and the answer will appear.
January 31, 2013
sickness
I don't know why it still catches me by surprise. It is the same every winter. My buddy catches a cold. He coughs and coughs. He almost gets better. My buddy catches another cold. He coughs and coughs even more. He seems to be on the mend when Whamo! the junk in his chest seems to take over. We have one of those nights where you debate taking my buddy to the emergency room. Finally morning comes and we can see our doctor. There is so much junk that he needs to cough out and he may have pneumonia. Antibiotics are prescribed.
This year my buddy decided to spice things up by adding in a bed full of vomit. My least favorite thing in the world. During the 'long night' I curse his inability to tell me what is wrong. Is he crying because something really hurts? Is he freaked out because he just wants to be sleeping instead of nonstop coughing? If he would just listen to me and calm down and breathe in the vapor steam and let me prop him up he would cough a little less. Instead he thrashes around his poor little body hammered by the coughing fits.
I know in the grand scheme of things, our illness is nothing compared to what others go through. I am grateful that all it takes to heal him is a prescription. I have high hopes that as he gets bigger and stronger we will no longer have to endure the 'long night'.
This year my buddy decided to spice things up by adding in a bed full of vomit. My least favorite thing in the world. During the 'long night' I curse his inability to tell me what is wrong. Is he crying because something really hurts? Is he freaked out because he just wants to be sleeping instead of nonstop coughing? If he would just listen to me and calm down and breathe in the vapor steam and let me prop him up he would cough a little less. Instead he thrashes around his poor little body hammered by the coughing fits.
I know in the grand scheme of things, our illness is nothing compared to what others go through. I am grateful that all it takes to heal him is a prescription. I have high hopes that as he gets bigger and stronger we will no longer have to endure the 'long night'.
January 15, 2013
glamorous
I thought I'd share just a few snippets of what my day was like. Just a typical day living my oh so glamorous life.
After we dropped monkey bear off at school, I headed to the grocery store with my buddy and rara. I was so excited to hear my buddy trying to talk that I bought the Mickey Mouse dried apples, Arthur cookie mix and Angry Birds cheese-its upon his request. My buddy will, of course, eat none of these things but he was so excited. He would point to the crackers, say "caca", point to my list and say "issss." As if he was reading the list and I specifically needed Angry Birds crackers. (I won't tell how much I spent.)
Then I dropped my buddy off at school. He walks around the car to rara's side. Then proceeded to step in the grass and pick up a piece of dog poop squishing it between his fingers. I wet wipe his hand off, grab rara and walk him into school asking one of the paras to please wash his hands right away because he just picked up poop.
Rara doesn't want to be left out of the fun so she has started her own shenanigans. While rara is nursing, she will unlatch, push with both hands and then laugh hysterically as milk shoots out and squirts her in the face.
We head back to school to pick up the big kids and one of monkey bear's class mates tells me she is in the nurses office because she cut her hand and needed a band aid. When I get to the nurses office I see a ghost white monkey bear and a nurse with a concerned look on her face. It seems monkey bear was cleaning up and scraped the palm of her hand on the bottom part of a chair. She walked over to her teacher with her bloody hand out and said she needed a band aid. She then threw away the flap of skin that was scraped off and headed to the nurses office.
When I got there the pain and amount of blood started to scare her so she started dry heaving and breaking into a sweat... just after the nurse walked out of the room. So I hurried her over to the garbage can (with rara still in my arms) putting a cold cloth on her head and prompting her to aim for the garbage. She eventually calmed down, drank a little juice and we headed down - very late at this point - to get my buddy. The good news is he doesn't care that we are late.
Then an uneventful dinner and bedtime. That rara better sleep good tonight because I need all my strength to make it through another day!
After we dropped monkey bear off at school, I headed to the grocery store with my buddy and rara. I was so excited to hear my buddy trying to talk that I bought the Mickey Mouse dried apples, Arthur cookie mix and Angry Birds cheese-its upon his request. My buddy will, of course, eat none of these things but he was so excited. He would point to the crackers, say "caca", point to my list and say "issss." As if he was reading the list and I specifically needed Angry Birds crackers. (I won't tell how much I spent.)
Then I dropped my buddy off at school. He walks around the car to rara's side. Then proceeded to step in the grass and pick up a piece of dog poop squishing it between his fingers. I wet wipe his hand off, grab rara and walk him into school asking one of the paras to please wash his hands right away because he just picked up poop.
Rara doesn't want to be left out of the fun so she has started her own shenanigans. While rara is nursing, she will unlatch, push with both hands and then laugh hysterically as milk shoots out and squirts her in the face.
We head back to school to pick up the big kids and one of monkey bear's class mates tells me she is in the nurses office because she cut her hand and needed a band aid. When I get to the nurses office I see a ghost white monkey bear and a nurse with a concerned look on her face. It seems monkey bear was cleaning up and scraped the palm of her hand on the bottom part of a chair. She walked over to her teacher with her bloody hand out and said she needed a band aid. She then threw away the flap of skin that was scraped off and headed to the nurses office.
When I got there the pain and amount of blood started to scare her so she started dry heaving and breaking into a sweat... just after the nurse walked out of the room. So I hurried her over to the garbage can (with rara still in my arms) putting a cold cloth on her head and prompting her to aim for the garbage. She eventually calmed down, drank a little juice and we headed down - very late at this point - to get my buddy. The good news is he doesn't care that we are late.
Then an uneventful dinner and bedtime. That rara better sleep good tonight because I need all my strength to make it through another day!
December 28, 2012
understand
I try and approach parenthood with a heavy dose of understanding. If one of the kids is acting out I try and think of how they may be feeling and what kind of outside forces may be at work as well. Sometimes it is as simple as a good snack to refuel. Other times its a bit more complicated like really missing "Mommy time" or having Daddy be away. I want to raise little individual people not just pods who will do everything exactly as I say so I try and listen and work with them as much as possible.
Unfortunately for my buddy I just don't understand him. I cannot figure him out. When he sees a baby and pushes them down, does he have any idea that he can hurt them and always scares them? I tell him every time.
When I tell him iPad time is over and he says over and over "iPad.... iPad.. .iPad...", does he just hope he will wear me down? Does he understand what I am saying?
Why does he have to spit the food out of his mouth just because he wants a drink of milk?
Every time he throws, he sits in time out. Yet he still constantly throws things.
Is there some sort of crazy logic known only to him or does he just act on impulse?
Why the need to hug every male over the age of 50?
I know my buddy gets frustrated because he can't tell me what he wants. But I honestly believe that half the time he doesn't even know what he wants. Or maybe he does and I just truly don't get him.
Unfortunately for my buddy I just don't understand him. I cannot figure him out. When he sees a baby and pushes them down, does he have any idea that he can hurt them and always scares them? I tell him every time.
When I tell him iPad time is over and he says over and over "iPad.... iPad.. .iPad...", does he just hope he will wear me down? Does he understand what I am saying?
Why does he have to spit the food out of his mouth just because he wants a drink of milk?
Every time he throws, he sits in time out. Yet he still constantly throws things.
Is there some sort of crazy logic known only to him or does he just act on impulse?
Why the need to hug every male over the age of 50?
I know my buddy gets frustrated because he can't tell me what he wants. But I honestly believe that half the time he doesn't even know what he wants. Or maybe he does and I just truly don't get him.
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