Some days around here are harder than others. It's like that for everyone right? Of course. Life is full of up and downs and a whole array of emotions. Life has taught me to feel all of them, the euphoric happiness and the gut wrenching sadness, and everything in between.
Life is teaching me lots of lessons.
A couple of weeks ago I went out for dinner and drinks with a long time friend who I hadn't seen in awhile. As we sat across the table from one another and reminisced about our “glory” days of high school. Who we dated, the things we did even when we knew we shouldn't have, senior camping and parties we went to. The things we thought would make or break us back then, because when you are 17 you feel like almost every situation will make or break you right? We came to the realization that although our parents lovingly sent us to private Christian school and we were to see all of the kiss we went to school with as Gods children, well we were shallow back then. We weren't always nice and we sometimes put others down to build up our own egos. Because again, when you are a girl in high school there doesn't seem to be anything more important than yourself and how other people perceive you. I mean how people saw us was how we perceived ourselves really. We partied and did the stupid things because we wanted to but also because we were too insecure to admit that maybe we were hurting or missing something.
This brings me to today. What life is teaching me. Some days I wake up and I forget for about the first five minutes what life has thrown my way. I forget that almost four years ago the dream I had of a typical third child was pulled out from under me. That although it doesn't feel like it while I am in it, when I sit back I realize, it is more work to have a child with special needs. I like to call it nickel and dime extra work, little things here and there. Yes, the first five minutes feel so calm. Then it hits me, I do in fact have a non typical child. This brings a smile to my face. Ironic huh?
You see the shallow girl of my youth comes back to my mind. The one who judged based on appearances. The one who felt bad for the people who faced adversity in life. The one who was so insecure she did the stupid things because she thought that would be the thing that would fill the hole in her life where the loneliness was.
I think of the times I should have interceded for someone who was being mocked, I think of the times I could have gone and sat with the kid who didn't have someone to sit with. After all wasn't I that kid before? Long before high school. Wasn't I the “chubby” (I hate that phrase by the way) girl in elementary school who was mocked because the only thing that fit well were sweat pants? Indeed I was. So why didn't I see how that hurts and do something?
Fear. What would people say if I tried to stop them from being a jerk to someone? Who would stop liking me?
And this brings me full circle back to the first five minutes, well actually minute 6 and beyond.
God and I have always this great thing worked out where we both know I need to be molded into a new creation, pretty continually but sometimes in a major way. God knows that my skull is thick and I have a stubborn streak. So he has this amazing way of smacking me upside the head and showing me to get down to business.
Minute 6 hits and I hear that sweet boy down the hall from my bed. I hear him yell “Mum!” And I remember the woman who would have and did feel bad for the parent who had the kid with special needs. And I am grateful that is not who I am anymore. Still a work in progress, but not the woman I once was.
Some days are hard. Life gives you a different perspective and you feel the hurts deeper. However, you also feel the happy deeper as well. You notice the injustices in the world more often, they were always there, you just didn't see them. This inspires you to change what you can. What a wonderful thing to be able to leave the world better than the day you found it.
Life is teaching me new thing every day. Every minute sometimes, for that I am grateful.
Saturday, October 22, 2016
Sunday, January 25, 2015
My thoughts...
If you are not in a mood to hear something about Down syndrome then I encourage you to exit stage right now. The following will likely sound jumbled and scattered because that is where my mind is at right now.
So Owen is almost two! Can I just say how crazy that sounds to me. There are many days that it feels like yesterday and many that feel like we have Owen in our family for forever.
The older Owen gets the further the developmental chasm is between him and his peers around the same age. Most of the time because of how little Owen is and the fact that he is non verbal I see him as younger than he is. Developmentally he is around 12 months old and guess what? I love it. I get to have this beautiful kid melt into me every morning with a sweet smile on his face. I get to stay in that "baby" stage a little longer with him. He still seems like a baby sometimes but then there are days when he seems like an almost two year old. He pushes his brother and sister over when they take his toy. He smirks when I tell him to stop while he is bolting for the dog dish. He knows he is adorable and plays it up like any other almost two year old. He has started stranger anxiety when we leave him in nursery or with a baby sitter. He is amazing.
So here is the dilemma. I recently read a statistic that 100% of people with Down syndrome have some degree of Alzheimer's by the time they are 50. I don't know the validity of this statistic and I am not claiming to have read any studies in reference to it. There was my disclaimer. :) However I have thought about it. I have thought about the fact that I would hate to lose Owens mind to this disease. It is a sad illness and hard on the person with it as well as friends and family of them.
This is for my non DS friends and family, a little info for you. There are supplements specifically formulated for people with Down syndrome. They are made to combat certain ailments that go with Down syndrome. One of the examples is Alzheimer's. Some help with speech, some help with certain stimulation seeking behavior. There is a plethora of info out there. I have done some reading and research on this. I also, referencing back to my last paragraph, know people with Down syndrome who are over 50 who have not been diagnosed with Alzheimer's.
But here are my thoughts. I know this is going to seem very foreign to a lot of people, including those in the DS community. I am ok with that, actually if it was not me saying it I might think it's a little out in left field to some degree. This is coming from a place of my belief system that God wrote each and every day of each of our lives down before we were even born. We all have free will but we also have a predetermined time. Again, I get that this concept and belief sounds ridiculous to some. It does not to me. So when Owen was formed in me God already knew exactly how he was knit together and what he would do in his life. There is this amazing verse in the Bible found in John 9:3. There is a blind man whom Jesus eventually healed but before he did his disciples asked Jesus...who sinned, him or his parents? Clearly there were under the belief that there must be someone to blame. This man had been blind from birth. And this, this is how my God answers!
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him."
I love this! God always works good for those who love him. How awesome is that?!
Back to ailments and development and delays. How far do we go? How long do we push Owen to be as close in development to his peers as he can be? Where do we draw that line? What if God knows what that he will get Alzheimer's at 52? What is the typical kid next to him also has a genetic predisposition to also have it? How proactive will his parents be with no guarantee that anything will change that?
So Owen is almost two! Can I just say how crazy that sounds to me. There are many days that it feels like yesterday and many that feel like we have Owen in our family for forever.
The older Owen gets the further the developmental chasm is between him and his peers around the same age. Most of the time because of how little Owen is and the fact that he is non verbal I see him as younger than he is. Developmentally he is around 12 months old and guess what? I love it. I get to have this beautiful kid melt into me every morning with a sweet smile on his face. I get to stay in that "baby" stage a little longer with him. He still seems like a baby sometimes but then there are days when he seems like an almost two year old. He pushes his brother and sister over when they take his toy. He smirks when I tell him to stop while he is bolting for the dog dish. He knows he is adorable and plays it up like any other almost two year old. He has started stranger anxiety when we leave him in nursery or with a baby sitter. He is amazing.
So here is the dilemma. I recently read a statistic that 100% of people with Down syndrome have some degree of Alzheimer's by the time they are 50. I don't know the validity of this statistic and I am not claiming to have read any studies in reference to it. There was my disclaimer. :) However I have thought about it. I have thought about the fact that I would hate to lose Owens mind to this disease. It is a sad illness and hard on the person with it as well as friends and family of them.
This is for my non DS friends and family, a little info for you. There are supplements specifically formulated for people with Down syndrome. They are made to combat certain ailments that go with Down syndrome. One of the examples is Alzheimer's. Some help with speech, some help with certain stimulation seeking behavior. There is a plethora of info out there. I have done some reading and research on this. I also, referencing back to my last paragraph, know people with Down syndrome who are over 50 who have not been diagnosed with Alzheimer's.
But here are my thoughts. I know this is going to seem very foreign to a lot of people, including those in the DS community. I am ok with that, actually if it was not me saying it I might think it's a little out in left field to some degree. This is coming from a place of my belief system that God wrote each and every day of each of our lives down before we were even born. We all have free will but we also have a predetermined time. Again, I get that this concept and belief sounds ridiculous to some. It does not to me. So when Owen was formed in me God already knew exactly how he was knit together and what he would do in his life. There is this amazing verse in the Bible found in John 9:3. There is a blind man whom Jesus eventually healed but before he did his disciples asked Jesus...who sinned, him or his parents? Clearly there were under the belief that there must be someone to blame. This man had been blind from birth. And this, this is how my God answers!
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him."
I love this! God always works good for those who love him. How awesome is that?!
Back to ailments and development and delays. How far do we go? How long do we push Owen to be as close in development to his peers as he can be? Where do we draw that line? What if God knows what that he will get Alzheimer's at 52? What is the typical kid next to him also has a genetic predisposition to also have it? How proactive will his parents be with no guarantee that anything will change that?
These thoughts are swirling in my head, over and over. Our family has been through a lot in the past 9 months. Most people have no idea what all we have been dealing with and honestly I am not comfortable sharing with the world. What I do know is that we are stronger than we thought. I know that you can think you are prepared for almost anything and then the floor drops out beneath you. I know my kid will never be at the same level as his peers across the board. And you know what? I love that part of him too. I love that he touches people in the depths of who they are because of how God created him different from lots of other kids. I don't know what his, what any of our, future hold but I know without a doubt that we are not alone on this journey. I don't know when or if we will start those supplements, we will make sure to keep Owen, and Paige and Blake as healthy as we can. The rest is in God's hands.
Wednesday, April 9, 2014
Enough
Last week I had the pleasure of having a moms night out with some ladies from church. We actually got to see a sneak peek of the movie Moms Night Out. Loved it and can't wait until my sisters and moms can see it when it comes out in May.
Basically the main character in the movie is struggling that she cannot get ahead in her life. She can't get ahead of the laundry, the cleaning, the emotional support, the kids climbing on her and a husband that needs her. She feels like she is not enough, not enough for her kids, her husband, her friends and to God. Really she just feels like she is not enough for her, in her own mind.
As I sat in the theater crying, because honestly who as a mom has not felt that way? Who hasn't sat or stood or as we are chasing children thought someone else could probably do this way better that me. I don't have enough time, energy, patience and attention to give to all these littles, plus my husband and then oh yea, those long lost friends that we long to see but where do we find the time?! Lately I feel like I can't catch up, I can't stay on top of emotionally supporting my family, stay up with all the stuff that needs to get done around the house and still have enough left over for my husband.
Back to the movie, the main character wonders, and who is with me...This is what I wanted when I was a little girl. I wanted the husband I love, the house we share and the kids I have always dreamed of. So why, with all that I dreamed of, do I still have days where I feel so unhappy and don't think I can make it until 6 o'clock when my husband gets home and I don't feel so anxious and like I have so much pressure on me to make sure all of my kiddos are getting the best of me.
So when is enough enough? When does it begin to feel like even if I don't feel like I am enough for them, they do? I am praying that I remember how excited I felt when I was a little girl thinking about this life? How I was going to be the best mom every single day! I have decided to take the pressure off myself and rely on my instincts and God and a whole lot of love from those around me to feel like God gave me the kids I have at the time I have them because I am capable of handling it and I will do more that survive, I will thrive!!!!!
This is me faking it till I make it!! ;)
Basically the main character in the movie is struggling that she cannot get ahead in her life. She can't get ahead of the laundry, the cleaning, the emotional support, the kids climbing on her and a husband that needs her. She feels like she is not enough, not enough for her kids, her husband, her friends and to God. Really she just feels like she is not enough for her, in her own mind.
As I sat in the theater crying, because honestly who as a mom has not felt that way? Who hasn't sat or stood or as we are chasing children thought someone else could probably do this way better that me. I don't have enough time, energy, patience and attention to give to all these littles, plus my husband and then oh yea, those long lost friends that we long to see but where do we find the time?! Lately I feel like I can't catch up, I can't stay on top of emotionally supporting my family, stay up with all the stuff that needs to get done around the house and still have enough left over for my husband.
Back to the movie, the main character wonders, and who is with me...This is what I wanted when I was a little girl. I wanted the husband I love, the house we share and the kids I have always dreamed of. So why, with all that I dreamed of, do I still have days where I feel so unhappy and don't think I can make it until 6 o'clock when my husband gets home and I don't feel so anxious and like I have so much pressure on me to make sure all of my kiddos are getting the best of me.
So when is enough enough? When does it begin to feel like even if I don't feel like I am enough for them, they do? I am praying that I remember how excited I felt when I was a little girl thinking about this life? How I was going to be the best mom every single day! I have decided to take the pressure off myself and rely on my instincts and God and a whole lot of love from those around me to feel like God gave me the kids I have at the time I have them because I am capable of handling it and I will do more that survive, I will thrive!!!!!
Tuesday, January 28, 2014
Ouch
Remember when you were a kid and you would scrape your knee or elbow or face for that matter and you would go in and your mom would put that lovely antiseptic on it and it STUNG?! Kind of took your breathe away for a second kind of sting. It's funny because until recently I had forgotten that my mom used to do that and obviously I got past the sting or I would have been thinking of it all along.
Two of my loves
So why did I suddenly begin to remember this sting? Because in the past month or so I have begun to feel that sting, not on my skin but in my heart. I sit and think I just need to grow some thicker skin or put things in perspective, you know the scheme of eternity? However in the past month or so there have been some comments that people have said which I will not go into completely but in reference to how Owen is progressing with his development. Let me preface my next sting story with a common misconception about children with Down syndrome. When Owen was born and we were told that he would have developmental delays I thought, big deal, Blake was so relaxed that he didn't walk until he was at least 20 months. I actually thought well Owen is my third this will be kinda sweet to have a "baby" a bit longer. As time has gone on I have come to realize that Owen is not just delayed but his cute little body doesn't have the same instincts that typical babies do as far as wanting and knowing how to move their bodies. Whereas a typical baby would instinctively know how to work their body to sit and get on all fours and crawl, Owen just simply does not. I am coming to terms with this, however it is a sting to me. I hate sometimes that he has to work his butt off and we have to show him like 1000 times how things should be done.
Moving on and please read this with a grain of salt as my emotions about this have been raw as of late. I am watching babies that are significantly younger than Owen surpass his physical development. I am not just talking about babies of family and friends, I am talking about walking into the mall and seeing the 10 month or so baby crawling and pulling themselves to standing at the plat place. I am seeing this and I pray that all of a sudden Owen will want and be able to sit on his own. I know it is going to happen. I know people think it is really nice that Owen is staying a "baby" just a little longer than most. But let me be transparent here and say this. He doesn't want to be a "baby". He is so frustrated with his body. We are frustrated for him. I have a daughter right now that is feeling that she wishes he wasn't around and to be honest I get where she is coming from. He is the highest maintenance baby we have had which wouldn't be a big deal if he was a first born and I had more time but I just don't. I am so thankful that each of our kids feels that our home is a safe place to share their feelings without judgement or fear that they will be shut down. Owen can be a happy baby. He generally is if he is being held and entertained. However lately he has not been and part of that has to do with the fact that he doesn't want to be a "baby" any longer.
So there is my vent. It might not be pretty and I am sure not everyone will understand it as I know that things for our family could be so much worse. Please be aware that I know that full well. But as we continue to venture down this road I know that we will have highs and lows and milestones when they are meant to happen, but right now we are in a low and that's ok too.
So why did I suddenly begin to remember this sting? Because in the past month or so I have begun to feel that sting, not on my skin but in my heart. I sit and think I just need to grow some thicker skin or put things in perspective, you know the scheme of eternity? However in the past month or so there have been some comments that people have said which I will not go into completely but in reference to how Owen is progressing with his development. Let me preface my next sting story with a common misconception about children with Down syndrome. When Owen was born and we were told that he would have developmental delays I thought, big deal, Blake was so relaxed that he didn't walk until he was at least 20 months. I actually thought well Owen is my third this will be kinda sweet to have a "baby" a bit longer. As time has gone on I have come to realize that Owen is not just delayed but his cute little body doesn't have the same instincts that typical babies do as far as wanting and knowing how to move their bodies. Whereas a typical baby would instinctively know how to work their body to sit and get on all fours and crawl, Owen just simply does not. I am coming to terms with this, however it is a sting to me. I hate sometimes that he has to work his butt off and we have to show him like 1000 times how things should be done.
Moving on and please read this with a grain of salt as my emotions about this have been raw as of late. I am watching babies that are significantly younger than Owen surpass his physical development. I am not just talking about babies of family and friends, I am talking about walking into the mall and seeing the 10 month or so baby crawling and pulling themselves to standing at the plat place. I am seeing this and I pray that all of a sudden Owen will want and be able to sit on his own. I know it is going to happen. I know people think it is really nice that Owen is staying a "baby" just a little longer than most. But let me be transparent here and say this. He doesn't want to be a "baby". He is so frustrated with his body. We are frustrated for him. I have a daughter right now that is feeling that she wishes he wasn't around and to be honest I get where she is coming from. He is the highest maintenance baby we have had which wouldn't be a big deal if he was a first born and I had more time but I just don't. I am so thankful that each of our kids feels that our home is a safe place to share their feelings without judgement or fear that they will be shut down. Owen can be a happy baby. He generally is if he is being held and entertained. However lately he has not been and part of that has to do with the fact that he doesn't want to be a "baby" any longer.
So there is my vent. It might not be pretty and I am sure not everyone will understand it as I know that things for our family could be so much worse. Please be aware that I know that full well. But as we continue to venture down this road I know that we will have highs and lows and milestones when they are meant to happen, but right now we are in a low and that's ok too.
Tuesday, December 3, 2013
Getting out of the Trenches
Remember that one time that you fully expected yourself to give 100% of yourself to every single person in your life and if you weren't well then you probably aren't doing something right? Have you ever been there? Or are you like me and feel like you might be giving 25% of yourself to the 4 people in your house and that is on a good day? Someone asked me how things were going with three and this was my exact quote...half kidding but you know how it goes.
" When I had two kids I felt like a really good mom. With three I feel maybe mediocre at best most days. "
This overflows into my marriage, my friendships, my church life and what is likely most of the problem, my spiritual life.
Well God and I had a bit of a coming to Jesus this week, and funny thing is, I keep trying to do this whole thing, this life thing on my own. By putting as much pressure on myself as I have been to be the perfect mom, wife, volunteer, and now Owen's PT and OT I have lost my way. And you know what God is telling me...you cannot keep doing this on your own! He did not give me the kids I have and the husband I am Blessed with and the friendships he has formed for no reason. This life is a puzzle and and intermingling of relationships that either help or hinder me. I know that I have lost connections with a lot of people in my life since Owen has been born and to be honest it is not intentional. I still hate to rely on people and I feel like a burden even to those I love sometimes but it has only just recently occurred to me that maybe I am being a blessing to those around me without even knowing it. Maybe I have drifted so far away from who I thought I was and who I really am that Satan has distorted my perspective. Made me feel not like a child of God anymore but a drag to those around me.
Well shove it Satan! I have one life on this earth and it better mean something!
Each and every day I will get up and do my best, I can't do more and I should for sure not doing less. I will have the mindset that my kids are not disappointed in me. That the friends that are true friends will understand if I fall off the grid for a while to find a new normal and focus on my family. That the places I volunteer for will get it if I need a bit of a break for a while.
I am bringing it back to the basics...God and Family. I know things will begin to fall back into place eventually and I won't feel like I am being pulled in so many directions, or maybe it won't. Either way I am going to be ok, not on my own for sure, but it takes a village right?
And now here are some recent pics....
" When I had two kids I felt like a really good mom. With three I feel maybe mediocre at best most days. "
This overflows into my marriage, my friendships, my church life and what is likely most of the problem, my spiritual life.
Well God and I had a bit of a coming to Jesus this week, and funny thing is, I keep trying to do this whole thing, this life thing on my own. By putting as much pressure on myself as I have been to be the perfect mom, wife, volunteer, and now Owen's PT and OT I have lost my way. And you know what God is telling me...you cannot keep doing this on your own! He did not give me the kids I have and the husband I am Blessed with and the friendships he has formed for no reason. This life is a puzzle and and intermingling of relationships that either help or hinder me. I know that I have lost connections with a lot of people in my life since Owen has been born and to be honest it is not intentional. I still hate to rely on people and I feel like a burden even to those I love sometimes but it has only just recently occurred to me that maybe I am being a blessing to those around me without even knowing it. Maybe I have drifted so far away from who I thought I was and who I really am that Satan has distorted my perspective. Made me feel not like a child of God anymore but a drag to those around me.
Well shove it Satan! I have one life on this earth and it better mean something!
Each and every day I will get up and do my best, I can't do more and I should for sure not doing less. I will have the mindset that my kids are not disappointed in me. That the friends that are true friends will understand if I fall off the grid for a while to find a new normal and focus on my family. That the places I volunteer for will get it if I need a bit of a break for a while.
I am bringing it back to the basics...God and Family. I know things will begin to fall back into place eventually and I won't feel like I am being pulled in so many directions, or maybe it won't. Either way I am going to be ok, not on my own for sure, but it takes a village right?
And now here are some recent pics....
Thursday, October 17, 2013
I'm not tired, I'm weary!
If you start to feel a breeze while reading this don't panic! It's just me venting up a storm.
I told Mike to tonight I was weary to which he logically responded, why don't you go to bed then? In which I struck back with, I'm not tired, I am weary. I used to think these two were the same as well. They go hand in hand right? Not to me, at least not anymore.
Tired to me means lack of sleep, slight fatigue etc. Weary, my friends, is a whole nother level.
I am spent, at the end of my rope, burning the candle at both ends. You get the picture.
I am losing it with my kids, my husband sometimes strangers that might cross my path in the car or in line somewhere (though not yelling, just fuming on the inside. ) My family is walking on egg shells around me, yeah makes me feel even crappier writing it.
I try, oh how I try to lay in bed every morning and pray, God today please give me the patience and grace to get through this day. Give me the words and actions that please you and give you the glory. Why then do I feel like most days my world is spinning off it's axis? Like I am one more whine out of my children's mouths before I snap? And better yet, why the whining? Do I need to take them somewhere and show them how much they really have? I had the thought this week...what are we doing? How are they turning into these little people that want and want and want? And then I feel like I am failing. They should not be this way. This is not how God expects me to raise my children. But how do I change this?! I am weary!!!!
I walked around Target trying to come up with some ideas I can give people to give to them for Christmas and you know what I came up with? They have enough, we have enough and then some!
I am weary of this world. I crave my Savior and perfection and the love of my Heavenly Father and I am striving for it. I am weary of trying to find the time and struggling to do it.
And now I sit here annoyed with myself because I have such an amazing life and all these great things and I still feel so very weary.
So no I am not tired. I am weary of life at the moment and honestly I wish I could get out of this slump but I am struggling. There I put it out there. Welcome to my open book. Praying the next chapter is a little more uplifting!
I told Mike to tonight I was weary to which he logically responded, why don't you go to bed then? In which I struck back with, I'm not tired, I am weary. I used to think these two were the same as well. They go hand in hand right? Not to me, at least not anymore.
Tired to me means lack of sleep, slight fatigue etc. Weary, my friends, is a whole nother level.
I am spent, at the end of my rope, burning the candle at both ends. You get the picture.
I am losing it with my kids, my husband sometimes strangers that might cross my path in the car or in line somewhere (though not yelling, just fuming on the inside. ) My family is walking on egg shells around me, yeah makes me feel even crappier writing it.
I try, oh how I try to lay in bed every morning and pray, God today please give me the patience and grace to get through this day. Give me the words and actions that please you and give you the glory. Why then do I feel like most days my world is spinning off it's axis? Like I am one more whine out of my children's mouths before I snap? And better yet, why the whining? Do I need to take them somewhere and show them how much they really have? I had the thought this week...what are we doing? How are they turning into these little people that want and want and want? And then I feel like I am failing. They should not be this way. This is not how God expects me to raise my children. But how do I change this?! I am weary!!!!
I walked around Target trying to come up with some ideas I can give people to give to them for Christmas and you know what I came up with? They have enough, we have enough and then some!
I am weary of this world. I crave my Savior and perfection and the love of my Heavenly Father and I am striving for it. I am weary of trying to find the time and struggling to do it.
And now I sit here annoyed with myself because I have such an amazing life and all these great things and I still feel so very weary.
So no I am not tired. I am weary of life at the moment and honestly I wish I could get out of this slump but I am struggling. There I put it out there. Welcome to my open book. Praying the next chapter is a little more uplifting!
Monday, October 14, 2013
We Stepped up for Down syndrome!
So this past Saturday we participated in our local Step up for Down syndrome walk. It was held at Millenium Park, which is beautiful by the way. Friends and family joined us and we raised $2700! Mike's company matched all donations from other employees and that alone raised $1200, yay Charter!
Saturday morning as I was getting Owen dressed and he laid on the floor giggling every time I said Mama to him I got a little teary. 6 months ago I would have never guessed that I would be as excited as I was to go to this walk. I have know about this walk for years and thought what a nice way to raise some money and take a little stroll. My eyes were really opened on Saturday. I have never felt uncomfortable around someone with Down syndrome and to me Owen is just a baby. Saturday as we got out of the car and began walking to the registration table I could not stop smiling. You see this walk is not just for young families with small kids. It is for people with Down syndrome of all ages. It is not like a lot of other walks that is raising money for a cure, we don't want a cure. It is a complete celebration of the culture that is the Down syndrome community. There were babies all the way up to adults with Down syndrome. Their friends and families were there to celebrate the individuals they are and how amazing their lives can be!
I have to say my favorite part was the dancing. There was a dance company that came and those people were so focused and fun with their moves. There was a kid that was standing near where we were that was feeling every single beat of the music without embarrassment that people were watching. He was egging people on to join in and dance. I want to be that way! I am so excited for next year when Owen is a little older and he can join in by clapping.
All in all it was a wonderful day and the only down side was that Paige was sick so my mom graciously stayed home with her. Next year!
Thank you again for all of your love and support and if you want, join us next year!!!
Saturday morning as I was getting Owen dressed and he laid on the floor giggling every time I said Mama to him I got a little teary. 6 months ago I would have never guessed that I would be as excited as I was to go to this walk. I have know about this walk for years and thought what a nice way to raise some money and take a little stroll. My eyes were really opened on Saturday. I have never felt uncomfortable around someone with Down syndrome and to me Owen is just a baby. Saturday as we got out of the car and began walking to the registration table I could not stop smiling. You see this walk is not just for young families with small kids. It is for people with Down syndrome of all ages. It is not like a lot of other walks that is raising money for a cure, we don't want a cure. It is a complete celebration of the culture that is the Down syndrome community. There were babies all the way up to adults with Down syndrome. Their friends and families were there to celebrate the individuals they are and how amazing their lives can be!
I have to say my favorite part was the dancing. There was a dance company that came and those people were so focused and fun with their moves. There was a kid that was standing near where we were that was feeling every single beat of the music without embarrassment that people were watching. He was egging people on to join in and dance. I want to be that way! I am so excited for next year when Owen is a little older and he can join in by clapping.
All in all it was a wonderful day and the only down side was that Paige was sick so my mom graciously stayed home with her. Next year!
Thank you again for all of your love and support and if you want, join us next year!!!
Thursday, September 19, 2013
Just a Boy
Let me start by saying that I don't want this post to come across as braggy or in your face. Honestly, that is the last thing I want this post to feel like. I said to Mike right off the bat when Owen was born that every baby is a miracle but to have a baby that has an extra chromosome and be a happy and healthy baby blows my mind. Technically Owen is not perfect, according to science that is. Yet I look at him every day and am so thankful for him and his diagnosis. Alright moving on...
We had an appointment with Dr. Dodge this morning. She is a pediatric development specialist. She is amazing!! You can tell right away that she has a passion for her work and loves kids. She talked to Owen and picked him up and made him laugh and talk, it was so cute. She checked him out, all the regular stuff that they do at a well child exam and then checked his fine and gross motor skills. He was a champ. There were some concerns before from our PT about some head flatness, she says he has a beautiful head and would not mess with it. He still has clogged tear ducts, people ask us if he has been crying sometimes. If those don't clear up after his first birthday we will talk about getting them taken care of. Talked about what blood tests she thinks we should have done. Just his thyroid. And between now and when he is one he needs to see a pediatric optometrist, no biggy. So THAT WAS IT! Seriously, I went to this appointment thinking this would lead to many more appointments, but that was it. I asked her what else we needed to know and these were her exact words..."Owen is the poster child for a healthy kid with Down syndrome." He has always been just a boy to me, just my boy. But today I had an expert tell me I could breathe for the moment.
This morning Paige was asking me about what if the thunder got louder, what if the lightening touched our house and so on and so forth. I drew back on what my dad used to say over and over again. We don't live our lives on what if.
I feel like for the past month before this appointment I have lived a little bit of the what if attitude. And I know there probably will be some things that come up in Owen's health. But I state again, we do not our lives on what ifs.
Here is a little stat attack for you too...
At 6 months Owen weighs 17 lbs. 5 oz. and is 26 inches long. He is on track with most things and a little behind with a few others. We thank God every day for all three of our kids and their healthy bodies and minds and cannot wait to see what God has in store for them!
We had an appointment with Dr. Dodge this morning. She is a pediatric development specialist. She is amazing!! You can tell right away that she has a passion for her work and loves kids. She talked to Owen and picked him up and made him laugh and talk, it was so cute. She checked him out, all the regular stuff that they do at a well child exam and then checked his fine and gross motor skills. He was a champ. There were some concerns before from our PT about some head flatness, she says he has a beautiful head and would not mess with it. He still has clogged tear ducts, people ask us if he has been crying sometimes. If those don't clear up after his first birthday we will talk about getting them taken care of. Talked about what blood tests she thinks we should have done. Just his thyroid. And between now and when he is one he needs to see a pediatric optometrist, no biggy. So THAT WAS IT! Seriously, I went to this appointment thinking this would lead to many more appointments, but that was it. I asked her what else we needed to know and these were her exact words..."Owen is the poster child for a healthy kid with Down syndrome." He has always been just a boy to me, just my boy. But today I had an expert tell me I could breathe for the moment.
This morning Paige was asking me about what if the thunder got louder, what if the lightening touched our house and so on and so forth. I drew back on what my dad used to say over and over again. We don't live our lives on what if.
I feel like for the past month before this appointment I have lived a little bit of the what if attitude. And I know there probably will be some things that come up in Owen's health. But I state again, we do not our lives on what ifs.
Here is a little stat attack for you too...
At 6 months Owen weighs 17 lbs. 5 oz. and is 26 inches long. He is on track with most things and a little behind with a few others. We thank God every day for all three of our kids and their healthy bodies and minds and cannot wait to see what God has in store for them!
Friday, September 6, 2013
Life with the O-Man
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| So squishy! |
- Squishy (really this kid is so soft and squishy!)
- Cuddly, hope this lasts.
- His profile, it was the first indicator that I saw in the operating room of his diagnosis and I have totally fallen in love with it. His little nose is the best.
- The fact that he is already proving stereotypes wrong. When we left the hospital they made sure to tell us that we needed to remember to stimulate him because kids with Down syndrome tend to be left in a bouncy or swing for long periods of time since they don't fuss too much. Paaalllleeeeaaaasssseee! This kid is completely fiesty. Hope that sticks around too.
- And one of the the biggest things I celebrate is this amazing community of people that I have met. The moms, the kids, the therapists! All amazing and all part of this wonderful culture that is Down syndrome.
Tuesday, August 27, 2013
My Baby!
Today was Paige's orientation day for kindergarten! How did that happen. Paige and I had a rough start from my labor with her to my postpartum depression. Let's just say I haven't always felt a super close bond with her and sometimes it makes me feel guilty. We are more alike than different and butt heads a lot. She is the epitome of a daddys girl but still whines if it is not my night to tuck her in and lay by her. There are many days I feel like I fail her, like the boys get more attention than she does from me because honestly they are not nearly as independent and she is. Alright enough rambling...She is off to spread her wings. We are both ready. However I know that first day that she is gone all day and not here for lunch and quiet time on the couch and all the random moments that I so take for granted, I will cry. I will sit and cry because she, well they, all three of them, are my job. They are what my world revolves around. So spread your wings sweet girl, show them whatcha got, be kind and don't let people walk all over you. ( not that I'm worried about that ;) )
Saturday, August 24, 2013
All the married ladies!
Let me preface this post with this. My house is a complete disaster and I am loving it, you will find out why in a moment. Let me also state that Mike is on a man weekend with his boyfriends.
So Mike left Friday morning to go to a cabin with his friends from church and he will be coming home tomorrow sometime. This has become an annual event. So this year I got the wonderful idea that I knew by Saturday night I might be at my whits end and maybe I wasn't the only one. Ding ding ding, let's all go off the deep end together. So we had a mom, kids, pizza and wine party. Amazing! Not only did our kids want a little mix in their weekend but I think the moms needed to sit and have a little vent as well. We were not husband bashing, too much, I promise. As we talked about the guys weekend I began to think and this is the question I pose....
Why is it so hard for us as women to take time to ourselves and bond with other women away from our kids? And if it is not hard for you and you don't feel a pinch of guilt please feel free to comment on this post and fill me in. :)
Seriously, do we feel like we are the only ones who can run our household and take care of our kids? Am I the only one who feels that way? Seriously I have gotten better, but when Paige was a baby I would leave Mike a list of what Paige needed and when. What I should have done was let him feel his way through it, stop being a control freak. Right now part of my issue is that I am still nursing Owen and that is a huge tether to home. But as we were talking tonight, us ladies, we decided we just need to do it. And honestly I don't think our husbands would mind. Well maybe they would but you know what? They can have a dads, kids, pizza and beer party and sit back and look at a very messy house with a smile on their face.
In closing I will put it out there, I never edit my posts, this is more like an online journal. Please excuse the randomness!!
So Mike left Friday morning to go to a cabin with his friends from church and he will be coming home tomorrow sometime. This has become an annual event. So this year I got the wonderful idea that I knew by Saturday night I might be at my whits end and maybe I wasn't the only one. Ding ding ding, let's all go off the deep end together. So we had a mom, kids, pizza and wine party. Amazing! Not only did our kids want a little mix in their weekend but I think the moms needed to sit and have a little vent as well. We were not husband bashing, too much, I promise. As we talked about the guys weekend I began to think and this is the question I pose....
Why is it so hard for us as women to take time to ourselves and bond with other women away from our kids? And if it is not hard for you and you don't feel a pinch of guilt please feel free to comment on this post and fill me in. :)
Seriously, do we feel like we are the only ones who can run our household and take care of our kids? Am I the only one who feels that way? Seriously I have gotten better, but when Paige was a baby I would leave Mike a list of what Paige needed and when. What I should have done was let him feel his way through it, stop being a control freak. Right now part of my issue is that I am still nursing Owen and that is a huge tether to home. But as we were talking tonight, us ladies, we decided we just need to do it. And honestly I don't think our husbands would mind. Well maybe they would but you know what? They can have a dads, kids, pizza and beer party and sit back and look at a very messy house with a smile on their face.
In closing I will put it out there, I never edit my posts, this is more like an online journal. Please excuse the randomness!!
Saturday, July 27, 2013
Socially Awkward
Truth or Dare? How about a little of both? Truth, I feel socially awkward a lot! If you know me personally and well you would look at me right now and laugh in my face. As much as I am a self admitted extrovert I feel so introverted sometimes. Shall I start at the beginning of what is my introverted self? Here we go...
Twinhood, if you are one, you might possibly get this. I lived with what turned out to be one of my best friends since birth, well even before. :) I joked at her wedding that we were wombmates, you know the womb, yeah cheesy I know. Anyway so moving on, think back to a time in your childhood when you wanted to run outside and play with your friends, you were sick of your siblings and bored and what not and you ran to your mom and asked if you could go out and play with your friends. Now picture this, your best friend lived in the room next to yours. You didn't feel that huge need to go out and play because your very best playmate was already there. Laura and I actually repeated preschool partly so we could socialize with other kids. Funny, right? If you know both of us even remotely you will know that for the most part we are polar opposites on so many levels but we mesh. Add in that my other still best friend, older sister Jacquie also was there and we honestly did not have an issue as we got older and got our own cars and what not, to sit at home on a Saturday night and watch a movie together. And later, maybe go out and do some things that might not have been the smartest. :) Jacquie and me, not Laura.
Another truth, I talk too much. I like to call it diarrhea of the mouth? There are many times that I talk because sometimes a silence seems to be too much. I need to seriously learn to work on my listening skills. I feel like this is part of the awkward part. I literally tell myself as I am talking, just shut up Amy. And sometimes I wonder if my talking is a gift and I just need to curb it a bit. Wow, even now I feel like I am just talking to talk...moving on.
And the last truth of the evening, I feel like my house is in a constant state of crazy. Like toys and dishes and laundry and more toys. I honestly did not grow up in a home like this, to be honest it was probably the complete opposite. In the past 2 years I have decided that as important as I think it is to teach our kids to take care of their crap, and trust me I do work on this as much as I hate it sometimes; I would rather play with my kids. Since Owen has been on the scene it has been especially important to me that I spend the time he is sleeping spending quality time with Paige and Blake. How long are they really at an age they still want to cuddle in the morning and play ball in the yard and want me to jump on the trampoline or sit in the kiddy pool? Not long! So yes, I am teaching them to take care of stuff and Mike is actually better at this than I am, but if you come to my house and it looks like a hot mess please take a breathe and hope it doesn't smell like a poppy diaper that might have been sitting there overnight.
I am reading the book Bittersweet by Shawna Niequist and it feels like a hug to my heart, here is a quote from her book about friends and a clean house. In fact the whole section of this book talks about your home team. Not spreading yourself too thin, keeping your time and energy at a good level to give to that home team around you. Highly recommend the book by the way.
"One way you can tell if someone's on your home team is if you'll let them walk right into your house without picking up dirty dishes and checking your hair before they get there."
Dare! I will stop talking, I will let God's spirit give me the right words even in the most mundane conversation. I will pray that I can accept the gift of gab from my Savior. Maybe someone else sees it as my spiritual gift as well, if not....oh well. I will stop worrying that if I don't make friends with every new neighbor, mom of a kid, wife of a coworker or random connection, that's ok. I am always open to these relationships but need to train myself not to spread myself so thin that I feel that I am not taking quality time with people who are already part of my life. If you are reading this please know that I am valuing all the new connections that I have made in the past 6 months though! Some are stronger than others and that's ok!
Twinhood, if you are one, you might possibly get this. I lived with what turned out to be one of my best friends since birth, well even before. :) I joked at her wedding that we were wombmates, you know the womb, yeah cheesy I know. Anyway so moving on, think back to a time in your childhood when you wanted to run outside and play with your friends, you were sick of your siblings and bored and what not and you ran to your mom and asked if you could go out and play with your friends. Now picture this, your best friend lived in the room next to yours. You didn't feel that huge need to go out and play because your very best playmate was already there. Laura and I actually repeated preschool partly so we could socialize with other kids. Funny, right? If you know both of us even remotely you will know that for the most part we are polar opposites on so many levels but we mesh. Add in that my other still best friend, older sister Jacquie also was there and we honestly did not have an issue as we got older and got our own cars and what not, to sit at home on a Saturday night and watch a movie together. And later, maybe go out and do some things that might not have been the smartest. :) Jacquie and me, not Laura.
Another truth, I talk too much. I like to call it diarrhea of the mouth? There are many times that I talk because sometimes a silence seems to be too much. I need to seriously learn to work on my listening skills. I feel like this is part of the awkward part. I literally tell myself as I am talking, just shut up Amy. And sometimes I wonder if my talking is a gift and I just need to curb it a bit. Wow, even now I feel like I am just talking to talk...moving on.
And the last truth of the evening, I feel like my house is in a constant state of crazy. Like toys and dishes and laundry and more toys. I honestly did not grow up in a home like this, to be honest it was probably the complete opposite. In the past 2 years I have decided that as important as I think it is to teach our kids to take care of their crap, and trust me I do work on this as much as I hate it sometimes; I would rather play with my kids. Since Owen has been on the scene it has been especially important to me that I spend the time he is sleeping spending quality time with Paige and Blake. How long are they really at an age they still want to cuddle in the morning and play ball in the yard and want me to jump on the trampoline or sit in the kiddy pool? Not long! So yes, I am teaching them to take care of stuff and Mike is actually better at this than I am, but if you come to my house and it looks like a hot mess please take a breathe and hope it doesn't smell like a poppy diaper that might have been sitting there overnight.
I am reading the book Bittersweet by Shawna Niequist and it feels like a hug to my heart, here is a quote from her book about friends and a clean house. In fact the whole section of this book talks about your home team. Not spreading yourself too thin, keeping your time and energy at a good level to give to that home team around you. Highly recommend the book by the way.
"One way you can tell if someone's on your home team is if you'll let them walk right into your house without picking up dirty dishes and checking your hair before they get there."
Dare! I will stop talking, I will let God's spirit give me the right words even in the most mundane conversation. I will pray that I can accept the gift of gab from my Savior. Maybe someone else sees it as my spiritual gift as well, if not....oh well. I will stop worrying that if I don't make friends with every new neighbor, mom of a kid, wife of a coworker or random connection, that's ok. I am always open to these relationships but need to train myself not to spread myself so thin that I feel that I am not taking quality time with people who are already part of my life. If you are reading this please know that I am valuing all the new connections that I have made in the past 6 months though! Some are stronger than others and that's ok!
Friday, July 26, 2013
This life of ours....Camping
OK so recap! We went on vacation last week. We spent 5 days at Silver Lake with part of my Hollebeek side of the family. Very much look forward to this every year and this year was no different. We had a new trailer this year which made things wonderful, here is why:
-the older kids sleep awesome because they cannot hear all the commotion going on outside.
-we have air conditioning, and with it being on average 95 degrees and sunny everyday this is where Owen and I spent most of our time.
-I can literally spend half the time packing. We leave a lot of things in the trailer that we use every time we go camping.
So all in all we had a good time. Wednesday night Paige was acting like a flippin disrespectful 14 year old girl so I made the decision that she would not be going on the boat across the lake to swim at the sand dunes. Paige being Paige freaked out and Aunt Jacq wanted to help out so offered to take Blake and Paige on a bike ride while Mike and I finished unpacking. As we had told Paige many times, do not ride fast through the gravel. She was so excited and still a bit peaved at me so was starting to ride like a bat out of hell and fell. Seriously she didn't even fall that hard but lost it when she did. Here is a pic of Owen and Paige laying on our bed after "the fall."
Anyway after we tried for a good half hour trying to calm the hot mess she was, we decided just to put her to bed. Slept great, got up the next morning and was fine. She did tell us her arm was sore but was moving it here and they and swam all day and seemed fine. Friday during the day her arm looked somewhat swollen but she was still moving it and seemed ok. Friday evening Mike came and showed me that her right arm, the one she fell on, looked shorter than the other. I ended up calling our Dr. (who by the way is awesome! It was a Friday night and he was not annoyed with me at all) and he told me to take her to Shelby to at least have it looked at. Off we went, and wouldn't you know, it was fractured.
Tuesday we went in and got a sweet hot pink waterproof cast that only has to be on until August 16 and doesn't seem to be holding her back, besides riding her bike. ;)
So here is to another exciting year of camping, already looking forward to next year, and maybe cooler weather!
-the older kids sleep awesome because they cannot hear all the commotion going on outside.
-we have air conditioning, and with it being on average 95 degrees and sunny everyday this is where Owen and I spent most of our time.
-I can literally spend half the time packing. We leave a lot of things in the trailer that we use every time we go camping.
So all in all we had a good time. Wednesday night Paige was acting like a flippin disrespectful 14 year old girl so I made the decision that she would not be going on the boat across the lake to swim at the sand dunes. Paige being Paige freaked out and Aunt Jacq wanted to help out so offered to take Blake and Paige on a bike ride while Mike and I finished unpacking. As we had told Paige many times, do not ride fast through the gravel. She was so excited and still a bit peaved at me so was starting to ride like a bat out of hell and fell. Seriously she didn't even fall that hard but lost it when she did. Here is a pic of Owen and Paige laying on our bed after "the fall."
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| Don't you love how Owen is smirking? |
Tuesday we went in and got a sweet hot pink waterproof cast that only has to be on until August 16 and doesn't seem to be holding her back, besides riding her bike. ;)
So here is to another exciting year of camping, already looking forward to next year, and maybe cooler weather!
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| Blake looks so annoyed here. |
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| I LOVE this pic of 2 of my favorite boys. On a side note, it's not that we don't want to take Blake's picture, he really doesn't like getting it taken. Hopefully that will change. |
Tuesday, July 2, 2013
Take a Step Back....
Sorry this post might be all over the place, my mind was reeling.
So here I sit thinking about a couple of different families that I "know" from FB who have babies with Down syndrome and what comes to mind is.....first that we are very Blessed that Owen has no major health complications as of yet and second am I setting myself up for a fall? I keep looking at Owen and thinking for the most part that he is just a baby. I sat while Early On came and evaluated him and chose not to do a PT referral as of now because Owen is so strong. I wanted to scream it from the rooftops how proud I was of him, my 6 week old showed him his stuff! And then the thought creeps into my mind, is this how things are going to stay? Am I preparing myself for the fact that it might and probably won't always go this way? Right now he is the baby boy that I love and cuddle and nurse, all the time it seems :) So when does the Down syndrome start? When do I start feeling like this might be a journey I don't know if I am prepared for? And does it? Does it ever start to feel that way or will I continue to see past what society has pinned as different and not as quickly developing and therefor not what it should be? That he will be referred to as developmentally delayed for how long? Life? Why can't we just call it what it is?! He is different than most kids and he might learn different and at a different pace but I don't want to ever feel like he is anything than him, than my boy who I loved from the minute I saw him and even before that. So world, he is Owen, he is going to knock your socks off! He will do it as his own pace and just like any kid he will understand and get things when he is capable. AMEN?! AMEN!
Cute isn't he?!
So here I sit thinking about a couple of different families that I "know" from FB who have babies with Down syndrome and what comes to mind is.....first that we are very Blessed that Owen has no major health complications as of yet and second am I setting myself up for a fall? I keep looking at Owen and thinking for the most part that he is just a baby. I sat while Early On came and evaluated him and chose not to do a PT referral as of now because Owen is so strong. I wanted to scream it from the rooftops how proud I was of him, my 6 week old showed him his stuff! And then the thought creeps into my mind, is this how things are going to stay? Am I preparing myself for the fact that it might and probably won't always go this way? Right now he is the baby boy that I love and cuddle and nurse, all the time it seems :) So when does the Down syndrome start? When do I start feeling like this might be a journey I don't know if I am prepared for? And does it? Does it ever start to feel that way or will I continue to see past what society has pinned as different and not as quickly developing and therefor not what it should be? That he will be referred to as developmentally delayed for how long? Life? Why can't we just call it what it is?! He is different than most kids and he might learn different and at a different pace but I don't want to ever feel like he is anything than him, than my boy who I loved from the minute I saw him and even before that. So world, he is Owen, he is going to knock your socks off! He will do it as his own pace and just like any kid he will understand and get things when he is capable. AMEN?! AMEN!
Friday, June 21, 2013
Moved and Other things.....
So we are moved!! Actually things went a lot smoother than I expected them to go. We had so much help. I packed a little at a time for about four weeks so by the time it was moving day we just had furniture and a few little things. I even had everyone eating off paper plates for the last week we were in the old house. The new house is almost twice the size as the old one. We did not move because we didn't think we had enough room. It honestly just kind of fell into place. For Owen's sake I wanted to be in the Hudsonville school district so that he could start at their new Early Childhood center and then continue on to Hudsonville Christian to be at the same school as Paige and Blake. Honestly that was one of the first thoughts in my mind when Owen was born was that I was nervous he would not be able to be at the same school as the other kids. After speaking with some teachers at HCS and some other moms who have kids who have DS at private schools we decided it was the best environment for Owen.
Anyway we are mostly settled. Mike is working on painting Blake's room tonight and we have a couple rooms getting new carpet in the next week or so but other than that we have almost every box unpacked. Here is a picture of the house.....the yard currently is something to be desired, this is an old picture.
Now as far as adjustments go...Paige is breezing through it socially. There are tons of kids around her ago on our street and she has made lots of new friends. She has aquired an attitude that is something to be reckoned with and I have lost it with her a few times but I think we are getting better. Blake on the other hand is having a terrible time adjusting. At the old house Paige and Blake were buddies as there weren't a lot of other kids near us that were their age. However Blake is such an intorvert sometimes and if you have ever met Paige and spent more than 10 minutes with her you know she is an extreme extrovert and can be kind of bossy, even with adults. We are working on that. ;) Blake is not social enough to join in the fun and Paige is having too much fun to think too much about Blake not joining in. He sat on the couch with me Monday and cried because he missed Paige and our old house. I felt physical pain for my little love. He and I spent a lot of time snuggling this week and I feel like he is slowly adjusting. I have had to limit the time Paige is running the streets with the other kids in the neighborhood, really 5 years old and it's like her little gang of friends run the street. I have learned to appreciate each of my kids personalities and gifts for what they are. I don't make excuses for their characteristics, they might be polar opposite but they are wonderfully unique!
Thankful for all the help we had for the move and all the love and support from all the people we love so much!!
Anyway we are mostly settled. Mike is working on painting Blake's room tonight and we have a couple rooms getting new carpet in the next week or so but other than that we have almost every box unpacked. Here is a picture of the house.....the yard currently is something to be desired, this is an old picture.
Thankful for all the help we had for the move and all the love and support from all the people we love so much!!
Tuesday, June 4, 2013
Strong Women
I am surrounded by them!
My moms, both of them! My sisters, all 5 of them and I have the most amazing friends around!
However a little less than a week ago I was introduced to a new group of strong women that I can already tell are going to be a Blessing in my life.
When we were in the NICU with Owen we had a wonderful nurse, who did not take care of Owen, but that came to talk to us. Stacey has a daughter Britton who has Down syndrome and Stacey and her husband also did not have a prenatal diagnosis. Stacey and I seem to have more in common than not as pertaining to having an intuition that our babies would be different. When she sat down and began to talk to Mike and me about her experience with Britton's birth and her feelings I looked at Mike and said, oh my goodness, these words are exactly what I am feeling. She gave me such an honest outlook on her experience and her family's experience into Britton's birth and I have to add my favorite word picture from her before I move on to the rest of these amazing women!
Think of the diagnosis of Down syndrome as a salad bar. Your kid is not going to have every health issue that goes with it. You would not pile up every topping on the salad bar onto your salad. Britton had low tone and a heart defect, Owen had low tone and feeding issues.
This seriously was exactly what I needed to hear!
Now last week I went to moms night out through the Down syndrome association of West Michigan, amazing organization by the way. So I initially thought that most of these women would be at least 40 and their kids would likely be at least 10 and I would have nothing in common with anyone but before mentioned Stacey. WRONG! Most babies born with DS are born to women under the age of 35. Each and every women there was awesome. Each brought something to the table and each seemed like they appreciated what the other brought to the table. I cannot explain how amazing it was to sit with a group of women who have been where I am. Who look at their child with DS and would not change it, would not fix their child's DNA for anything and see each and every one of their kids as a mind blowing Blessing. We sat and ate and had some drinks and shared in this amazing common bond that our kids are different. And I feel like everyday they celebrate different, yes celebrate. Are they honest? Of course! There are issues that arise but you know what is great about this group of women? They listen. First. After they listen they think if any possible resource that could help the issue and then as far as I can tell would make it happen for one another. They come from all walks of life. Some work full time, part time, stay home with their kids. Religious or not. Married or not. First time moms or a mom of 6. We share this common bond, a bond none would change and a bond I am beyond thankful for. I hope some of these women have read this and know how amazed I was at each and every one of them. I look forward to getting to know each of them better and watch Owen grow up with their awesome kids!
My moms, both of them! My sisters, all 5 of them and I have the most amazing friends around!
However a little less than a week ago I was introduced to a new group of strong women that I can already tell are going to be a Blessing in my life.
When we were in the NICU with Owen we had a wonderful nurse, who did not take care of Owen, but that came to talk to us. Stacey has a daughter Britton who has Down syndrome and Stacey and her husband also did not have a prenatal diagnosis. Stacey and I seem to have more in common than not as pertaining to having an intuition that our babies would be different. When she sat down and began to talk to Mike and me about her experience with Britton's birth and her feelings I looked at Mike and said, oh my goodness, these words are exactly what I am feeling. She gave me such an honest outlook on her experience and her family's experience into Britton's birth and I have to add my favorite word picture from her before I move on to the rest of these amazing women!
Think of the diagnosis of Down syndrome as a salad bar. Your kid is not going to have every health issue that goes with it. You would not pile up every topping on the salad bar onto your salad. Britton had low tone and a heart defect, Owen had low tone and feeding issues.
This seriously was exactly what I needed to hear!
Now last week I went to moms night out through the Down syndrome association of West Michigan, amazing organization by the way. So I initially thought that most of these women would be at least 40 and their kids would likely be at least 10 and I would have nothing in common with anyone but before mentioned Stacey. WRONG! Most babies born with DS are born to women under the age of 35. Each and every women there was awesome. Each brought something to the table and each seemed like they appreciated what the other brought to the table. I cannot explain how amazing it was to sit with a group of women who have been where I am. Who look at their child with DS and would not change it, would not fix their child's DNA for anything and see each and every one of their kids as a mind blowing Blessing. We sat and ate and had some drinks and shared in this amazing common bond that our kids are different. And I feel like everyday they celebrate different, yes celebrate. Are they honest? Of course! There are issues that arise but you know what is great about this group of women? They listen. First. After they listen they think if any possible resource that could help the issue and then as far as I can tell would make it happen for one another. They come from all walks of life. Some work full time, part time, stay home with their kids. Religious or not. Married or not. First time moms or a mom of 6. We share this common bond, a bond none would change and a bond I am beyond thankful for. I hope some of these women have read this and know how amazed I was at each and every one of them. I look forward to getting to know each of them better and watch Owen grow up with their awesome kids!
Tuesday, May 21, 2013
Packing.....
So I mentioned before that we are moving. Was I crazy to do this? Actually the timing of our move is not the real issue but more the fact I have 3 small children! When I am not nursing or trying to get a baby to sleep (which feels almost constant), I am either breaking up a fight between Paige and Blake or trying to demand enough respect from their tag team they have now formed. Now I also have a husband who goes to work everyday and works hard and then throws on his daddy hat when he gets home. I am sure the last thing he wants to do at the end of the day is pack up a house. So here I sit.....trying to decide what I can pack away and still get away with living in our house and functioning until the actual move. Aaaaaahhhhhh like I said this is something we really want but this week it has been somewhat overwhelming, and it's only Tuesday!!!!
And my Little man fell asleep during tummy time, I could just eat him up!!!!
Here is the tag team themselves, they have a love/hate relationship!
This was last spring, not too sure Mike would approve of this picture either.
So we carry on. I need to really stop myself and really play with my kids as much as I can since time is passing oh so quickly. The packing will have to wait until after bed!
So we carry on. I need to really stop myself and really play with my kids as much as I can since time is passing oh so quickly. The packing will have to wait until after bed!
Monday, May 13, 2013
Lately
So whats new with the Wigger Fam......
-We are moving! Very random. After Owen was born I had a strong feeling that I wanted to be in Hudsonville so Paige could ride the bus to school and eventually Blake too. I also wanted Owen to start and keep the same therapy team and eventually go to the new ECC in Hudsonville that they are developing. So we found a house we liked and were going to list ours but it turned out that it sold before we even listed it. It was such a Blessing and we will be moving about 4 minutes from school. The kids are excited. I am not looking forward to packing and unpacking but like I said to Mike, I feel like our lives are in somewhat of an upheaval anyway, why not add to it and get it all over with at once?!
-Tonight Paige had her preschool celebration. This is the equivalent of a graduation and it was so fun to see all the kids singing their little hearts out. It sounds crazy but I could hear Paige very clearly and it was cracking me up, the girl loves to be on a stage and sing. We'll see where this takes her someday. She will be in kindergarten all day on T/TH/FR next year. I am going to miss her like crazy. I am so proud of the strong willed and smart young lady she is. She also impresses me with how much she loves those around her and her Savior. She is so much like me in certain ways, like her strong will and emotional outbursts and so much like Mike in the way that she is so confident and smart! Can't wait to see what God has in mind for her. :)
-Owen is in a study for U of M's kinesiology department. So last week head of the department and his assistant came to our house and measured and weighed him and checked his motor skills and development. He then wore some motion sensors on his ankle and wrist for 24 hours and will be doing this whole deal once a month until 6 months and then again at 9, 12 and 18 months. The study is to compare typical kids and kids with DS and the rate each grows and gains muscle, fat and weight in general as compared to their activity. It won't be benefiting Owen but will hopefully help kids after him. Kids with DS can struggle with obesity and because of their low muscle tone can deal with rapid fat gain as well. Looks like Owen might be keeping me in shape if I am going to be working out with him in the future.
Beyond that we are getting through life. Some days are harder than others. I keep joking that people think I am going to board the crazy train soon. I just mean that sometimes I think people think I might be a bit too positive about things. My husband included. Some days I do want to pull my hair out and think to myself this is hard. It's hard to have to teach your kid that his muscles need to work and connect and he needs to close his mouth better to nurse or take a bottle. Or that he hates tummy time as all babies do but that he needs to do it that much more than other kids. And when I have so many appointments in a month I feel like I am neglecting Paige and Blake. Yes it sucks! But it is life. God never looked down on me and said Amy, you are going to have it made it the shade, smooth sailing and no challenges. He did say that no matter what He would give me what I needed when I needed it. NOT what I wanted, what I needed. And I feel this peace everyday. There are moments when I know one of the kids is frustrated with me and lack of time or attention. But you know what? He made the same promises to each of them. Every single one of them, and Mike as well. We are getting through it and my positive attitude is something that I feel He has Blessed our family with and pray it continues.
I tried to post some recent pictures but the computer is acting funky so until next time......
-We are moving! Very random. After Owen was born I had a strong feeling that I wanted to be in Hudsonville so Paige could ride the bus to school and eventually Blake too. I also wanted Owen to start and keep the same therapy team and eventually go to the new ECC in Hudsonville that they are developing. So we found a house we liked and were going to list ours but it turned out that it sold before we even listed it. It was such a Blessing and we will be moving about 4 minutes from school. The kids are excited. I am not looking forward to packing and unpacking but like I said to Mike, I feel like our lives are in somewhat of an upheaval anyway, why not add to it and get it all over with at once?!
-Tonight Paige had her preschool celebration. This is the equivalent of a graduation and it was so fun to see all the kids singing their little hearts out. It sounds crazy but I could hear Paige very clearly and it was cracking me up, the girl loves to be on a stage and sing. We'll see where this takes her someday. She will be in kindergarten all day on T/TH/FR next year. I am going to miss her like crazy. I am so proud of the strong willed and smart young lady she is. She also impresses me with how much she loves those around her and her Savior. She is so much like me in certain ways, like her strong will and emotional outbursts and so much like Mike in the way that she is so confident and smart! Can't wait to see what God has in mind for her. :)
-Owen is in a study for U of M's kinesiology department. So last week head of the department and his assistant came to our house and measured and weighed him and checked his motor skills and development. He then wore some motion sensors on his ankle and wrist for 24 hours and will be doing this whole deal once a month until 6 months and then again at 9, 12 and 18 months. The study is to compare typical kids and kids with DS and the rate each grows and gains muscle, fat and weight in general as compared to their activity. It won't be benefiting Owen but will hopefully help kids after him. Kids with DS can struggle with obesity and because of their low muscle tone can deal with rapid fat gain as well. Looks like Owen might be keeping me in shape if I am going to be working out with him in the future.
Beyond that we are getting through life. Some days are harder than others. I keep joking that people think I am going to board the crazy train soon. I just mean that sometimes I think people think I might be a bit too positive about things. My husband included. Some days I do want to pull my hair out and think to myself this is hard. It's hard to have to teach your kid that his muscles need to work and connect and he needs to close his mouth better to nurse or take a bottle. Or that he hates tummy time as all babies do but that he needs to do it that much more than other kids. And when I have so many appointments in a month I feel like I am neglecting Paige and Blake. Yes it sucks! But it is life. God never looked down on me and said Amy, you are going to have it made it the shade, smooth sailing and no challenges. He did say that no matter what He would give me what I needed when I needed it. NOT what I wanted, what I needed. And I feel this peace everyday. There are moments when I know one of the kids is frustrated with me and lack of time or attention. But you know what? He made the same promises to each of them. Every single one of them, and Mike as well. We are getting through it and my positive attitude is something that I feel He has Blessed our family with and pray it continues.
I tried to post some recent pictures but the computer is acting funky so until next time......
Tuesday, April 30, 2013
In the Scheme.....
So here we go.....a little vent for you!
In the scheme of Eternity, how much does Owen having Down sydrome matter?
Since Owen has been born I have been told repeatedly what a challenge his life will be and how sorry people are that we are going through what we are going through. Before I offend someone let me first say that I know people only mean well and are not sure what to say to me or us sometimes. For goodness sake, 6 weeks ago I might have been the same way.
But here are my thoughts on the matter. Never has God promised any of us that our lives on the earth would be easy. He has always promised he would give us what we needed to get through it. Since Owen has been born I have felt more peace in my life than ever before, there is no explanation for this but I am so thankful for it! Owen will have a visit from Early On tomorrow afternoon. Here begins the journey of therapy. Of achievements that might have come easy for Paige and Blake will probably take longer for Owen. Is this bad? Not to me. Is it sad? Not to me. Is it something to feel sorry for us about? Please don't! It is DIFFERENT! Yes Owen's life will be different. But let's look at it this way, Paige's life is and will be different than Blake's and Owen's will be different that both of theirs. But is different bad? Not to me. The journey we are just getting started on with Owen will be his journey. He will bring new things to the table in our family. He will need extra help but what else is family for than to help the people that we love?
So in the scheme of eternity how much does Down syndrome matter? It doesn't and it does all at once. I keep reminding myself that this is not something God is doing to us but is something God is giving us. A glimpse into his view of perfection.
In the scheme of Eternity, how much does Owen having Down sydrome matter?
Since Owen has been born I have been told repeatedly what a challenge his life will be and how sorry people are that we are going through what we are going through. Before I offend someone let me first say that I know people only mean well and are not sure what to say to me or us sometimes. For goodness sake, 6 weeks ago I might have been the same way.
But here are my thoughts on the matter. Never has God promised any of us that our lives on the earth would be easy. He has always promised he would give us what we needed to get through it. Since Owen has been born I have felt more peace in my life than ever before, there is no explanation for this but I am so thankful for it! Owen will have a visit from Early On tomorrow afternoon. Here begins the journey of therapy. Of achievements that might have come easy for Paige and Blake will probably take longer for Owen. Is this bad? Not to me. Is it sad? Not to me. Is it something to feel sorry for us about? Please don't! It is DIFFERENT! Yes Owen's life will be different. But let's look at it this way, Paige's life is and will be different than Blake's and Owen's will be different that both of theirs. But is different bad? Not to me. The journey we are just getting started on with Owen will be his journey. He will bring new things to the table in our family. He will need extra help but what else is family for than to help the people that we love?
So in the scheme of eternity how much does Down syndrome matter? It doesn't and it does all at once. I keep reminding myself that this is not something God is doing to us but is something God is giving us. A glimpse into his view of perfection.
Tuesday, April 9, 2013
Questions
So Mike and I have had this discussion in the past week or so and just wanted to share. We are learning so many things about people with Down syndrome and what is politically correct and what might not be. The amazing Down sydrome Association of West Michigan is amazing and gave us this great binder when Owen was in the NICU with tons of information in it and I have been like a sponge lately with learning about Down syndrome and different interventions used that will help Owen develop as time goes on. So back to the initial thought. Mike and I want people to know that while we are learning a lot quickly we are still learning. However we want people to feel open to ask us questions. Send us a message or post a comment here and we will do our best to answer.
On a different note, this week is the first time since I went on bed rest 7 weeks ago that I am starting to feel like we are all settling in and balancing out. the kids have been through a whole lot in less than two months and I have watched Paige and Blake transform into this tag team. Before they would fight against each other and now they are joining up to take on Mike and I together. Cute huh? It is to me sometimes because it lets me see that they are watching out for one another and I know they will do the same for Owen. :)
On a different note, this week is the first time since I went on bed rest 7 weeks ago that I am starting to feel like we are all settling in and balancing out. the kids have been through a whole lot in less than two months and I have watched Paige and Blake transform into this tag team. Before they would fight against each other and now they are joining up to take on Mike and I together. Cute huh? It is to me sometimes because it lets me see that they are watching out for one another and I know they will do the same for Owen. :)
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