And baby makes five. We are thrilled to have our family complete and this baby girl has done that and more. In honor of tradition, since monkey bear named my buddy, I will let my buddy name the baby. He currently calls her "Rara," so rara it is.
I have been known to say that I don't enjoy the newborn phase, but I am really enjoying it this time. Rara is so sweet and there is nothing like a good cuddle with such a little one. I think with the first baby you are so terrified and things are so scarey. Every little thing seems like such a big deal. And then with my buddy, there were all the doctors visits and Birth to 3 and the worries that go along with that. I hardly had a chance to fully appreciate his babyness.
It was a bit surreal being in the same hospital where my buddy was born, walking by the special care nursery, being flooded with all the memories. I was so worried that something would go "wrong" and things wouldn't end the way I wanted. I pretty much grabbed the baby and ran as soon as they would let me.
Every day my heart melts when I see monkey bear loving rara. Monkey bear wants to hold her all day long and always checks on her to see how she is. Monkey bear told me the other day that she just can't believe how much she loves her sister. The rare times that rara is on the ground, monkey bear is right there holding her hand, talking to her, gently rubbing her head. It is so sweet.
My buddy loves rara as well, but is having a harder time adjusting. He does like to kiss her her and hold her hand, but he requires a lot of supervision. Rara can't be put down or left alone in a room that my buddy is in. Even when you are watching, my buddy has been known to throw a thing or two at the baby. In all honesty, my buddy has been throwing EVERYTHING. I feel bad because he isn't getting the attention he is used to and doesn't know how to express how this makes him feel. Ultimately I think this will be good for him. I tend to cater to my buddy too much. I hope that in expecting him to be more self sufficient he will step up to the plate.
All in all, things are going well and we are all managing the best we can. I am trying hard to write things down and take lots of pictures so I can remember the sweetness of a new baby.
June 26, 2012
May 17, 2012
talking
It's funny how on most days I don't even notice that my buddy can't talk. I understand almost all of what he is trying to tell me. Even monkey bear knows what he wants. "Ssshhhh" with a wiggle of the hand means, "May I have some goldfish please?" "AHHHHHHH!" means, "stop what you are doing right now I don't like it."
Then there are those times when he is crying and we have no idea what is wrong or if something hurts and you really notice his lack of communication. Or maybe we are having a play date and his friend has no idea what my buddy is trying to tell him. Some mornings we head to the mall for mall walking as a family. When my buddy goes off with Daddy, I can hear his grunting coming down the hallway. He sounds so much younger than his 3 1/2 years.
So, we upped the ante and my buddy is now in private speech therapy (along with what he gets in school). It's always a rude awakening to read the report and get our homework assignment of helping my buddy make "ooohhh" and "eeeee" sounds. We aren't even up to words. There is always that part of me that wonders if we did enough.
I don't know how to teach someone how to talk. I know all about talking to your children about the world around them and reading lots of books. I know how to listen to your children (even if it's baby garble) and talk back and forth to show how conversations work. I've done all this... plus lots and lots more... yet we are still working on "oooooo". I have confidence that he will get it in his own time, but I can't help but wonder how old he will be. I feel like I am missing out on what is going on in his head.
Then there are those times when he is crying and we have no idea what is wrong or if something hurts and you really notice his lack of communication. Or maybe we are having a play date and his friend has no idea what my buddy is trying to tell him. Some mornings we head to the mall for mall walking as a family. When my buddy goes off with Daddy, I can hear his grunting coming down the hallway. He sounds so much younger than his 3 1/2 years.
So, we upped the ante and my buddy is now in private speech therapy (along with what he gets in school). It's always a rude awakening to read the report and get our homework assignment of helping my buddy make "ooohhh" and "eeeee" sounds. We aren't even up to words. There is always that part of me that wonders if we did enough.
I don't know how to teach someone how to talk. I know all about talking to your children about the world around them and reading lots of books. I know how to listen to your children (even if it's baby garble) and talk back and forth to show how conversations work. I've done all this... plus lots and lots more... yet we are still working on "oooooo". I have confidence that he will get it in his own time, but I can't help but wonder how old he will be. I feel like I am missing out on what is going on in his head.
April 23, 2012
number three
I am getting more and more excited for the birth of my third little one. There were so many factors that went into deciding if we should have one more. But when it comes right down to it, I love being a mom and who can resist just one more to love.
When we first took the leap into parenthood, I had it in my mind that I wanted two children close in age. Mission accomplished... but of course it wasn't quite what I had planned. When the words Down syndrome entered our life all of a sudden things change. My buddy may live on his own, but I don't trust anyone other than family to check up on him. There are too many people in this world that could take advantage of his open heart.
My buddy will never give me grandchildren. While it's a little premature to be thinking that far ahead, it makes a difference to me. I don't want to put too much pressure on monkey bear to be the sole provider of grandchildren while looking out for my buddy. Although we are not having a child just to offer support to monkey bear, it's all part of the equation.
After my buddy was born and we looked at him and saw the unexpected in those almond eyes, there was such grief and heartache. I am looking forward to a uncomplicated post birth (knock on wood) and the opportunity to just relish in the new life without shedding one sad tear.
Nothing broke my heart more than having to leave the hospital without my buddy. I needed to have him in my arms, nursing and needing me. My heart couldn't heal until he was with me. Instead of bonding, I was left hooked up to a machine like a milk cow making endless trips back and forth to the hospital to deliver the precious nutrition. There was not enough time for either child.
My hopes for my third (and last) birth are happy smiles, no awkward conversations filled with all the wrong words and my baby in my arms the day I leave.
When we first took the leap into parenthood, I had it in my mind that I wanted two children close in age. Mission accomplished... but of course it wasn't quite what I had planned. When the words Down syndrome entered our life all of a sudden things change. My buddy may live on his own, but I don't trust anyone other than family to check up on him. There are too many people in this world that could take advantage of his open heart.
My buddy will never give me grandchildren. While it's a little premature to be thinking that far ahead, it makes a difference to me. I don't want to put too much pressure on monkey bear to be the sole provider of grandchildren while looking out for my buddy. Although we are not having a child just to offer support to monkey bear, it's all part of the equation.
After my buddy was born and we looked at him and saw the unexpected in those almond eyes, there was such grief and heartache. I am looking forward to a uncomplicated post birth (knock on wood) and the opportunity to just relish in the new life without shedding one sad tear.
Nothing broke my heart more than having to leave the hospital without my buddy. I needed to have him in my arms, nursing and needing me. My heart couldn't heal until he was with me. Instead of bonding, I was left hooked up to a machine like a milk cow making endless trips back and forth to the hospital to deliver the precious nutrition. There was not enough time for either child.
My hopes for my third (and last) birth are happy smiles, no awkward conversations filled with all the wrong words and my baby in my arms the day I leave.
April 2, 2012
guilt
Another holiday is approaching where my buddy gets left out. Granted he has no idea he is missing out on the fun. Today monkey bear got to decorate eggs. I really wanted to wait until my buddy was home from school and let him participate. Then visions of a dyed egg being tossed across the room, landing with a splat, permanently dying the floor Spring Green came to mind. Not to mention the thought of cupfuls of Paas being dumped on skin, clothes and hair.
I feel so guilty knowing that my buddy doesn't get to color eggs or bake Christmas cookies or even pick out his own Halloween costume. I love a holiday and I especially love the memories of all the traditions and fun activities my mom did with us. My mom hid Easter candy around the house up until we were in our 20's - and we never complained once!
I find myself saying - but he's 3. He should be able to join us. Then he takes a spoonful of cereal and flings it across the table and I remember who my buddy is. He has so many wonderful qualities. He is funny and outgoing and genuine. But my buddy is impulsive and reckless. I have high hopes that he will grow out of this phase some day. Until then, we will have our traditions when he isn't looking and rest peacefully knowing there will be many years where he will participate in everything.
I feel so guilty knowing that my buddy doesn't get to color eggs or bake Christmas cookies or even pick out his own Halloween costume. I love a holiday and I especially love the memories of all the traditions and fun activities my mom did with us. My mom hid Easter candy around the house up until we were in our 20's - and we never complained once!
I find myself saying - but he's 3. He should be able to join us. Then he takes a spoonful of cereal and flings it across the table and I remember who my buddy is. He has so many wonderful qualities. He is funny and outgoing and genuine. But my buddy is impulsive and reckless. I have high hopes that he will grow out of this phase some day. Until then, we will have our traditions when he isn't looking and rest peacefully knowing there will be many years where he will participate in everything.
March 15, 2012
lessons
I was watching a show about giving your Kindergartener a heads up so they could go further in life and be more of a leader. I have no way of knowing what kind of a parent I would be if Down syndrome never entered my life, but I have learned many life lessons from my buddy. One important lesson is to celebrate what your child can do - without trying to compare them to others. I think I put way less pressure on my kids to be THE best and work on being THEIR best than I would have otherwise.
I also learned that parents of children with Down syndrome have a lower divorce rate. My personal theory is it's hard to forget about loving each other when you see such displays of love from your child. My buddy will go up to random children in Target, give them a hug and kiss and then just walk off.
Having a child with special needs is so full of yin and yang. Some days I struggle just wanting life to be easy for my buddy. Wishing the little things didn't have to be so hard. Dreaming of the day when he can tell me what is wrong instead of throwing himself down on the ground. Wondering how old he will be when he is finally potty trained. Then there are the days when he is so funny - even without words. Or the way he looks at me with devotion and never ending love. Oh, and the snuggling that little boy can do. Those days I wouldn't change a thing.
Then I think about monkey bear. I wish she wasn't so shy and would speak to her peers. I wish she wouldn't cling to me and would just run off and play. Is that really any different? I know that peer interaction is a challenge to her and her shyness will be an obstacle she will need to overcome throughout her whole life. I don't really want to change monkey bear. But as a parent, it can be so hard to watch your children struggle.
I guess every child can teach their parents many lessons. I think because my buddy's lessons come at a slower rate and are hammered in on a daily basis, it is easier to hear them.
I also learned that parents of children with Down syndrome have a lower divorce rate. My personal theory is it's hard to forget about loving each other when you see such displays of love from your child. My buddy will go up to random children in Target, give them a hug and kiss and then just walk off.
Having a child with special needs is so full of yin and yang. Some days I struggle just wanting life to be easy for my buddy. Wishing the little things didn't have to be so hard. Dreaming of the day when he can tell me what is wrong instead of throwing himself down on the ground. Wondering how old he will be when he is finally potty trained. Then there are the days when he is so funny - even without words. Or the way he looks at me with devotion and never ending love. Oh, and the snuggling that little boy can do. Those days I wouldn't change a thing.
Then I think about monkey bear. I wish she wasn't so shy and would speak to her peers. I wish she wouldn't cling to me and would just run off and play. Is that really any different? I know that peer interaction is a challenge to her and her shyness will be an obstacle she will need to overcome throughout her whole life. I don't really want to change monkey bear. But as a parent, it can be so hard to watch your children struggle.
I guess every child can teach their parents many lessons. I think because my buddy's lessons come at a slower rate and are hammered in on a daily basis, it is easier to hear them.
February 21, 2012
different
When you have a baby with Down syndrome, you are automatically welcomed in to this amazing community of people. There is a ton of support and families more than happy to answer any question you may have. As my buddy has grown, I've noticed there are some pretty polarizing topics within the community. I'm still forming my opinions but there are some views I have that I'm sure many others don't agree with.
My buddy is different from other kids. Sure he's just a child learning how to make his way in this world and he does things that every other kid out there does. I've had a hard time putting into words how he is different. I think the only way to describe it is most typical kids have a certain order that they reach each milestone. My buddy reaches milestones haphazardly. He'll reach a physical one right on target while a cognitive milestone will be months to come, for example.
This haphazardness coupled with the huge lack of impulse control can lead to safety issues. My buddy at the age of 3 has to be locked into his room every night. His room only has a mattress on the floor, a dresser bolted to the wall with drawer locks and no knobs, and a few soft toys. My buddy gets locked in there while I shower as well because it's not safe to have him in the rest of the house unsupervised. We have many years ahead of us before he can walk along with me in the grocery store or play in the yard without me right there.
Even though my buddy is different it is OK with me. I don't feel like I need to pretend he is something that he is not. Just like it is OK that monkey bear is super shy and won't talk to her peers. It's all a part of who they are.
I have mixed emotions about inclusion. I love the fact that my buddy is lucky enough to be included at school and given the opportunity to make friends with lots of different people. I just don't think I believe in inclusion at all costs. I wouldn't expect monkey bear to be in Advanced Algebra if she wasn't able to understand the concepts and learn. I would find a math class that was more appropriate for her ability. If my buddy understands Algebra and enjoys it then all the more power to him. But if being in a special ed class that teaches him how to balance a checkbook is more appropriate than so be it. Whatever his ability may be is fine with me.
Let's face it. We all make friends with people who are like us. I don't have friends who are Harvard educated rocket scientists nor do I have friends who are intellectually disabled. I want my buddy to make lifelong friends with anyone that appreciates who he is.
I think the most important thing we can do for all our children is to encourage them to push themselves and be the best they can be while honestly accepting who they are.
My buddy is different from other kids. Sure he's just a child learning how to make his way in this world and he does things that every other kid out there does. I've had a hard time putting into words how he is different. I think the only way to describe it is most typical kids have a certain order that they reach each milestone. My buddy reaches milestones haphazardly. He'll reach a physical one right on target while a cognitive milestone will be months to come, for example.
This haphazardness coupled with the huge lack of impulse control can lead to safety issues. My buddy at the age of 3 has to be locked into his room every night. His room only has a mattress on the floor, a dresser bolted to the wall with drawer locks and no knobs, and a few soft toys. My buddy gets locked in there while I shower as well because it's not safe to have him in the rest of the house unsupervised. We have many years ahead of us before he can walk along with me in the grocery store or play in the yard without me right there.
Even though my buddy is different it is OK with me. I don't feel like I need to pretend he is something that he is not. Just like it is OK that monkey bear is super shy and won't talk to her peers. It's all a part of who they are.
I have mixed emotions about inclusion. I love the fact that my buddy is lucky enough to be included at school and given the opportunity to make friends with lots of different people. I just don't think I believe in inclusion at all costs. I wouldn't expect monkey bear to be in Advanced Algebra if she wasn't able to understand the concepts and learn. I would find a math class that was more appropriate for her ability. If my buddy understands Algebra and enjoys it then all the more power to him. But if being in a special ed class that teaches him how to balance a checkbook is more appropriate than so be it. Whatever his ability may be is fine with me.
Let's face it. We all make friends with people who are like us. I don't have friends who are Harvard educated rocket scientists nor do I have friends who are intellectually disabled. I want my buddy to make lifelong friends with anyone that appreciates who he is.
I think the most important thing we can do for all our children is to encourage them to push themselves and be the best they can be while honestly accepting who they are.
February 1, 2012
food wars
My buddy is slowly making me insane. I mean that in the best possible way. Most of the day is filled with hugs and laughter, but each mealtime is filled with drama and stress.
A typical meal lately goes something like this: I put food on the table. My buddy throws himself down in a full blown temper tantrum. Monkey bear and I roll our eyes and eat our meal while he rolls around on the ground.
Since my buddy is in school now I just can't bring myself to send him in with an empty belly. So now come the theatrics... from me. I can remember when monkey bear was about 9 months old and I had to sing Old MacDonald every time I wanted to feed her or she refused to open her mouth.
So the food is on the table. It is food that my buddy approves of yet he is complaining full force. If you just plop him at the table in this state, the food is guaranteed to fly across the room. So Mommy heads over to iTunes to put on the one song that will stop the crying: Three Little Birds by Bob Marley. (Or Bobby Marley if your name is monkey bear) If it is a mild meltdown, then the song alone may be good enough. If we are in major meltdown mode you must pick up the flailing 35 pound preschooler and dance about the room first.
The smile he gives is almost worth the strain on my back and pregnant belly. The next move is either straight to his chair. Or on those really bad days, he sits on my lap. Never put the food within reach until you have completely assessed the mood. One must slyly nudge the milk close and if that goes well then introduce the food.
The thing that gets me is when my buddy finally starts to eat, he is happy and will eat the whole thing. I am embarrassed that I fall for it every time. But I hate the cracker diet in front of the TV and that seems to be the alternative. I've tried feeding him nothing and then sometime later give him the same food. It's never gone well.
I would pay countless dollars for some magic chair that he loved and sat in happily while munching on his healthy food. A girl can dream...
A typical meal lately goes something like this: I put food on the table. My buddy throws himself down in a full blown temper tantrum. Monkey bear and I roll our eyes and eat our meal while he rolls around on the ground.
Since my buddy is in school now I just can't bring myself to send him in with an empty belly. So now come the theatrics... from me. I can remember when monkey bear was about 9 months old and I had to sing Old MacDonald every time I wanted to feed her or she refused to open her mouth.
So the food is on the table. It is food that my buddy approves of yet he is complaining full force. If you just plop him at the table in this state, the food is guaranteed to fly across the room. So Mommy heads over to iTunes to put on the one song that will stop the crying: Three Little Birds by Bob Marley. (Or Bobby Marley if your name is monkey bear) If it is a mild meltdown, then the song alone may be good enough. If we are in major meltdown mode you must pick up the flailing 35 pound preschooler and dance about the room first.
The smile he gives is almost worth the strain on my back and pregnant belly. The next move is either straight to his chair. Or on those really bad days, he sits on my lap. Never put the food within reach until you have completely assessed the mood. One must slyly nudge the milk close and if that goes well then introduce the food.
The thing that gets me is when my buddy finally starts to eat, he is happy and will eat the whole thing. I am embarrassed that I fall for it every time. But I hate the cracker diet in front of the TV and that seems to be the alternative. I've tried feeding him nothing and then sometime later give him the same food. It's never gone well.
I would pay countless dollars for some magic chair that he loved and sat in happily while munching on his healthy food. A girl can dream...
Subscribe to:
Posts (Atom)