I just want to get this one off my chest because it's come up quite a bit for me and it's my own personal battle or struggle, if you will. I wonder what other people think about this.
Here is the scenario. We parents all love to talk about the future of our children with our friends and their kids. Often we parents love to talk, joke, or imagine our son/daughter either dating, marrying, or going to the prom with our friend's son/daughter. This is very typical, fun and harmless talk.
Now here's my dilemma. When it comes to Joaquin, I find myself holding back from making these types of comments for fear of alarming the other parent in some way. Would it freak my friends out? Now, Joaquin is already betrothed to many adorable sweethearts in the "little something extra" club (wink, wink!!) but I have never made a comment to a friend if their child happens to be "typical." I know Joaquin is loved and accepted by my friends but for some reason I'm afraid to even approach this particular subject. In fact, I steer clear of this kind of talk when it comes to Joaquin. If it's Diego or Mateo, it's a totally different story.
Is this wrong? Is this being too cautious? Is this a silly thing to be thinking about? Am I being prejudiced? Am I limiting my child in some way? I don't know. If we are all about acceptance, then I shouldn't be worried about making these very innocent and fun comments about Joaquin with whoever pops into my head. Is it realistic to think that he will date or marry someone "typical"? I don't know...probably not. Is it possible he will go to a prom with someone "typical"? Probably. I think about the movie Mr. Blue Sky where a "typical" young man falls in love and marries a young woman with Down syndrome. I thought the movie was charming but unrealistic. I love the idea of it but somehow I just don't see it happening. Has it happened before? Am I way off base?
I wonder...
Anyone else feel like this sometimes?
Living life one day at a time as a family of six...3 busy and bouncy boys and 1 Ukrainian princess. Our third son Joaquin was our unexpected blessing who came to us with a little something extra called Down syndrome and inspired us to adopt Sofia an orphan we fell in love with through Reece's Rainbow. We hope that our story will help open people's eyes to the beauty and gift that ALL children are. We are all more alike than different!
It makes me sad that we have to filter the way we think or talk about our babies futures. On the one hand I don't like other people to talk about how Joey is going to do things I don't think are realistic. Yet I would love to believe that anything is possible. And I get mad at myself for placing limits on what I think Joey is going to be able to accomplish. I think this is something we unfortunately are going to struggle with for a very long time. You are not alone in your thoughts. I think some of us local moms with extra special babies should get together more often so we can talk about these things together.
ReplyDeleteI totally agree w/ Cori. My heart broke when I first heard the diagnosis and I projected a limited future onto JM based on what I read in books. Now I'm not so sure if he'll have very many limitations at all. I'm constantly amazed at what adults w/ Ds are doing in their lives. Sometimes I wonder about the future --I don't know if, realistically, JM will drive a car or live independently, but I'm sure he'll fall in love -- maybe many times. I probably avoid those topics because I just don't know what the future holds. I think as our little ones grow and become more mature, we parents will know better what to say. We're still growing and learning, too. And I think it's awesome that we're forging friendships while our little ones are so young!
ReplyDeleteThis is off-topic, but I wanted to add: I just read a very wonderful, and heartwarming, and beautifully written story by a certain someone in GIFTS 2!
ReplyDeleteI wanted to thank you for sharing your family, your feelings, your life, in the effort to help show how life with Down syndrome is, ultimately, something to celebrate.
Thank you, on behalf of all our kids, for the good, good, work.
(and as an aside? Avery has three marriage proposals and I consider ourselves lucky to be part of any one of those families. It makes me so happy to think there will be others who love him as much as we do, and that we can someday love a young woman as much as we love him. I tell everyone! Because I think they might not realize...life is full of unexpected joy, if you are open to the surprise.)
xo
I know what you mean. I guess I do the same thing. One of my neighbors has a baby boy with DS and we joke that we'll be inlaws someday. But, Goldie plays with a 2 year old by next door and I never say anything about that because I am afraid it would bother the parents. Even when he grabbed her and kissed her on the mouth yesterday! I feel like I'm betraying her by thinking like that, but I'm also trying to be realistic. It just leaves me feeling uncomfortable.
ReplyDeleteMM would be lucky to marry a boy as sweet and handsome as little J.
ReplyDeleteI have a dear friend from college who uses a wheelchair and she is happily married to a man who does not. They have a beautiful adopted daughter and a terrific life.
I say love knows no "barriers".
Such a tough one... AND... I don't think I have an answer either.
ReplyDeleteY'know, I spend alot of time just being with Malakai that I forget his diagnosis - I know it must sound strange, but I kind of forget... And then I am reminded and I wouldn't say I'm sad. It's more of 'oh, yes, almost forgot that'.
As for the future - I find that any and EVERY time I go there, it only causes me sadness. Who are we to say what Life and Love is about? Is it about the Prom? A white wedding? A Valentines card? A red rose? Or maybe is it about being Real, True, Authentic, Loving, Accepting, and Understanding. Living Life Loving Every Moment. I think that we can teach our children that. Perhaps they can't have the plastic stuff, but they can have the real stuff that happiness is made of.
So, when I sometimes think of the future I remind myself that my son's future will be perfectly his, he will be happy and satisfied, he may walk to a different beat, but it'll be his beat, his happiness.
I don't think it's about lowering expectations as much as it is adjusting our focus on other possiblities.
*Sorry for the essay!!
I've had many of the same thoughts. While with a girlfriend who found out she was having girl #3, I wanted to say, "Perfect match for our three boys." But it isn't a perfect match. And I have been concerned about ever uttering anything like, "Amy's future beau," or something similar, for fear of insulting someone.
ReplyDeleteIt's not that I'm trying to put limits on who Micah is, but I'd just be happy for him to find a woman with T21 to spend his life with. How could I ask for more?
Hi Jen,
ReplyDeleteI know my situation is a little different but I too have a hard time talking about Jackson in the future for other reasons but also because If he survives I have no idea how he will be affected by his treatment and what his limitations will be. So, ......yes, yes, yes, I know exactly how you feel. I too talk and joke about things Wyatt will do but with Jack I refrain and frankly get a lump in my throat when others talk about it. Even still, I think our very special kids will continue to surprise and amaze us with there strength and resiliancy, time and time again. I truly believe that.
Sorry its been so long... lets try to together sometime!!
Keri