Monday, October 19, 2009

The Future...

Yes, it's something we all think about from time to time or maybe for some, all of the time. Questions we may ask ourselves: Where will I be 10 or 20 years from now, what kind of job will I have, what will my family be like? When you have kids you of course think about their future as well as yours. But when you are told you will have a child with special needs, it is often the very first thing you think about. Don't know why but for some reason it's all I could think about when we first found out. When I got that call from the genetic counselor on December 26th, 2008, telling me that our baby did indeed have Trisomy 21, I went to my room to cry and all I could picture was a man with Down syndrome in the grocery store, bagging groceries. And all I could think was this will be my son, the grocery bagger. Just being honest here. This was my picture of Down syndrome. A random man in the grocery store was really my only experience so this is what I claimed for my son's future.

So why is it that I assume so much and automatically put limits on Bennett? Why do I assume Ainsley and Harper will go to college and have a great job and a beautiful family but for Bennett I assume he won't go to college or get married or have a great job? Every day I see a video of someone with Down syndrome either getting married, driving a car, getting crowned Prom King, swimming across the ocean. Why do I put these limits on Bennett? Why is it when you are told you will have a child with special needs you automatically assume they won't amount to much. Why does society assume they won't amount to much? No one knows what the future holds.

And why is it that I look down on a job such as bagging groceries for a living? That person is happy, helping others and contributing to society. If that's what Bennett ends up doing, what would be so bad with that?

I can't tell you how many times I've read about people just finding out their child has Down syndrome and their first concern often is: Will my child live with me for the rest of his/her life? I've thought of it too. When I was pregnant I thought how will Mike and I ever go on a vacation by ourselves when the girls are off and married and we still have Bennett? There I go again, assuming away.

I think through this process thus far I have really learned to take things day by day. I cannot focus on a future that is not in my hands. I've learned I cannot put limitations on any of my children, I cannot assume they will do this or that or they won't do this or that. Again, it's letting go of that control I (and I think many parents) try to hold onto so tightly. We are not in control. Simple as that.

It's very nice to just let go of the assumptions in life and focus on today. Today Ainsley is a happy 4 (almost 5!)year old that enjoys school and dance and playing with her sister. Today Harper is a fun loving 2 year old that is learning to talk more and use big words like: cinnamon roll and rhinoceros {so cute to hear her say these by the way}. And today Bennett is a cute, almost 5 month old and he is learning to swat and grasp at toys that dangle above him, roll both ways and makes us smile bigger than we've ever smiled just by seeing his sweet face. Today we are simply living for today and not focusing so much on tomorrow.


  1. Hey Adrienne!

    Oh I've been there too... I STILL go there! I think it's pretty normal to think about these things being the parents and all. I do feel though that there is so much hope for our kids with DS. So many emerging opportunities. Now that Siena is growing up and 3 1/2 (already!), I think I worry most about her education and whether or not to homeschool her or not. I obsess about the possibility of kids making fun of her once she starts "typical" school. I want to protect her from that...but really how much protection can I give her? She needs to live her life too....and let's face it. There are ignorant people everywhere. I can't possibly protect her from all of them. It's a hard battle for me. Still fighting it.... uhhhh

    On a much lighter, happier note..Siena is talking a combination of jargon/words with this cute little high pitched voice that she throws in some times for dramatic effect, I guess! I LOVE it! LOL

    Trying to stay the course of living for today...
    Steph :)

  2. What a great post. You have written what most of us are thinking or have thought at one time or another. I thought about the vacation thing too( funny) and will she always live with us? Will we ever be alone again? That was all before she was born. It's amazing how your views change once you hold these precious little bundles in your arms. I once had a conversation with Peter about where Emilia would go if something happened to us( when we are older). The kids all want her! It was their idea. How cute is that! Now they have something else to fight about... who gets Emmie!

  3. This is wonderful. I love that you bring your words directly from the heart. Thanks.

  4. Great Post! Thank you for your honesty! We too are learning to live in the moment. One lesson God continues to teach me (I'm a slow learner) is that we are not in control as much as we try to plan out our future. He has a much greater plan for us then we can ever plan for ourselves. That includes Bennett and Kaitlyn too. He has amazing plans for their future. Greater then we can ever dream up for them. Again, great post!

  5. Well put, my friend. You know, I STILL think about those things too....what will he be able to do with his life? Where will he work? Where will he live?

    Jn has always enjoyed drawing up house plans and redoing house plans to suit the mood we are in at that particular time in our lives. Now, we are planning to have JEB in an apartment over the garage or live in a guest house of sorts on the back of the property that we may someday buy and build a house on. That way, he's taken care of and it will house him and a roommate or if GOD so blesses him, a wife. Who knows? GOD only.

  6. You know, it's funny. When I try to picture either of my children's future - all I get is a blank image. I have no idea what either will do, nor can I imagine them doing any one particular thing. Though, like you, when I imagine particular jobs for Landon, I tend to set limits (though I know I shouldn't!).

    Irregardless of our children's abilities, all we can do is hope that they'll be healthy and happy and that success for them is measured by the amount of joy in their lives, not by their degrees or paycheck.

    Through my job in the criminal justice system, I've seen so many people who have had almost limitless potential and opportunities, only to throw them away, or have them taken away, in a moment of stupidity. That is where my fear of the future lies.

    This is totally selfish, but when I think about my kids getting older, I feel as though I'll always have Landon to hang on to. That I'll always be able to keep him near me. McKayla may want to venture out and move far away (or she may not - hopefully). It is almost like right now that, because of Landon's delays, I get to have him as a baby for just a little bit longer.

    Thanks for such a thought provoking post, and for your honesty!

  7. So true ... we are not in control... and that can be hard at times!

    It is so important to cherish each day and live in the moment. One day I know I will look back on this stage in my life and wish I could have it all back.

    Thanks for writing such a great post!

  8. Good for you for not taking today for granted, or for not pre-destining your children's futures. We don't know what any of our kids will or won't do. It's all up to them and God. Great post! =)

  9. What have we except today, anyway? I think it's cute to read about Stephanie's kids clammoring to have Emmie...mine say the same thing. They argue over who Nate will live with. Any yet, several of my aquaintances at church who have adult children with Ds are freaking out that their kids want to live either on their own... or together in an environment designed for them to live together, but apart from their parents. Two young ladies in particular, Sarah and Amanda, are both 23 and want to move out and live together SO BAD but it's their parents who don't want to let go! I think just like your basement find not long ago...your feelings and thoughts about what is possible will change a thousand times. I'm so glad you're enjoying those wonderful moments today-right now. Smiling this big feels really good, doesn't it? I still cry when I smile at him sometimes. And it's been 2 years (tomorrow!)

  10. This was of course one of my first thoughts...just last week I came home crying from sams club with this same thought for my Maddox...thank you for putting it so honest...and letting me know I am not the only one..thank you...

  11. WOW I Could have written this (only I wouldn't have worded it as well)

    Thank you for your honesty and for sharing. My son is 6.5 month old and 5 months corrected.

    I'm a mom of 4 and look forward to following you on this journey.

  12. Part of the reason I read other blogs of families who have a child with Down Syndrome is because it makes ME feel better to know there are other people out there with the same thoughts, feelings, concerns, etc. When I read this post, all I could think to myself was...I know...I really know and I UNDERSTAND what you are saying. I remember the day my husband and I found out that Colin's diagnosis was confirmed and just crying because all I could picture was him working at a grocery store pushing carts. 6 months later, I still have concerns and fears for Colin, but they are changing as I realize Colin's perserverance. You're right, maybe he will end up contributing to the community as an employee of a grocery store because that makes him happy...and my husband and I will fully support him. I think it's natural to have these feelings because we just don't know what will happen...but we just keep walking this journey and we will figure it out...

  13. I think it's quite natural as parents to have these types of thoughts, especially as parents of children with special needs. I know I've had some of those same thougths here and there--more so early on when we first found out Camden has Ds.

    However, when I do find myself heading down that road of thinking, I stop, reflect, and remind myself that Camden will be able to do whatever she sets her heart and mind to do--just like Bennett will.

  14. Reading your post took me back in daughter Jessie is 8 now. When she was younger I thought so much more about that kind of thing. Now, when I think about the idea that she might (or might not) continue to live with us,I think about the kinds of things we might choose to do with our time. (volunteer somewhere I've always wished to have the time to do?) There are so many things that looking back, I spent a lot of time trying to figure out. Now I realize that I don't have to have it all mapped out (just like I don't know the future for my other 2 kids). So many things I spent time trying to figure out....just don't seem that important anymore. It's impossible not to think about them early on in the journey..but perspective changes over time. Another person commented that her kids fight over who their child with DS will live 2 kids already lovingly talk about Jessie living with them.


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