Jul 31 2008
Everyone has a Story! Meet Lianna and Gabe!
I have set up my email to get Google Alerts. This helps me to keep up with any new information concerning Down syndrome and mosaic Down syndrome. I have met a lot of new people this way and have had the opportunity to get a glimpse into people’s lives and what they are doing with their child.
Yesterday in my email box, I got a glimpse into Lianna and Gabe’s life. And I could totally relate to what Lianna was saying. I am sure that she doesn’t feel this way every waking moment of every day, but as parents we do tend to have these days and I think Lianna voiced what most parents feel, but maybe do not express out-loud. As parents of children with special needs we are somehow put on this pedestal of expectations and are expected to be consistently happy with our situation. And, most of the time, we are!
But then there are those days, when we feel like Lianna did yesterday…..
Here is Lianna’s story…
http://mylifewithgabriel.blogspot.com/2008/07/there-are-days.html
There Are Days…
There are quiet moments within me when I wish with all my might that the whole damn world had Down syndrome. I wish that Down syndrome was the “norm” and I didn’t have to second guess myself, my son and the people around me.
You know what makes people with Down syndrome different than everyone else? Everyone else. Everyone else.
It should be okay to hug and kiss strangers when feeling completely overjoyed. It should be okay to not articulate words verbally but use other means of communication. It should be okay to look like you have Down syndrome. It should be okay to be a three year old boy with Down syndrome. It should be.
There are mornings when I choose not to take Gabriel out to the park — “the social arena”. You know why? Because I can’t take another moment of Gabriel having Down syndrome in the eyes of the other mothers/grandparents/aunts & uncles/caregivers. I don’t have the strength to carry my guard, put on my happy smile and sing “Wheels on the Bus” while pushing Gabe on the swing. These are the mornings when I would rather stay at home, with Gabe, drawing “T’s”, “A’s” and whatever else on the driveway with chalk.
These are the mornings that I hide. These are the mornings that I wish for other children, a sibling for Gabe, or a daycare/preschool so I can go away. Go away and work. Just go away.
We are teaching Gabe to replace hugs and kisses with high-5’s. We are teaching Gabe to follow simple instructions, like stay off the road and don’t play with the floor register grates. We are teaching Gabe…We are teaching Gabe…We are teaching Gabe…
I’m tired of teaching. I just want Gabe to be.
If given the chance, would I choose a child without Down syndrome? I don’t know. Would I change history. I don’t think so.
I wouldn’t give away the child I have now. That’s certain.
I would choose a society that completely accepts Down syndrome, even welcomes this oddly wonderful genetic disorder into the world.
On the telephone today, with the “behavioural department” of our local support services, I found myself starting the conversation with “no thanks” to “yep! Sign us up!”. Weaving in and out of conversation was the blatant fact that, “Yes, Gabe does have some issues that I need help with…” More so, I need a mental support beam to hold me up. I spend most of my day emotionally dancing between two partners: “He’s only three…This is typical toddler stuff.” and “Is he doing this due to Down syndrome and how do I deal with it?” The trouble with all this is that I am standing still. I can’t seem to decide what to do in any given situation. And I’m tired out emotionally. I do have some “why bother?” moments.
I’ve been asked why do I focus on Gabe having Down syndrome when it comes to behavioural things…like repeatedly running into the road. Why can’t I just focus on the behaviour and change it?
Well, it’s because he does have Down syndrome. Is it going to take longer for him to learn not to run into the road? Will it take him longer to hone that sense of danger and to use caution? I don’t know. I just don’t know what is contributing to Gabe repeatedly doing this kind of thing. That is the dance. Back and forth, back and forth. All day long. Every day.
I’m all over in every direction with this post, but I guess what I am trying to say is that sometimes, I need to be in either of two places. In a society completely made up of people with Down syndrome — just so I know that everything for my son is going to be alright — or in a place of only me, my husband and my son — just so I know that everything I am doing for my son is alright. Neither of these places truly exist. A good thing, I know, but there are days…
My comments:
Every parent feels this way at one point or another and I don’t think it matters if your child has special needs or not. Parents worry… it is our job! Is my child tall enough, thin enough, smart enough, fast enough? The list goes on and on. We are not all the same because God made us all different. However, when someone looks at your child as if there is something wrong with them, there is this pain that stabs you in your heart because more than anything you want your child to be accepted in the world. You want everyone to see your child’s funny side, their tender side, their personality–the way you see it. When a parent looks at their child, they don’t see the faults, they see the child! And it hurts when others don’t see that.
I encourage everyone to read:
If People With Down syndrome Ruled The World
Dear Lianna—Please remember that Italy is not always a wonderful place! Italy has just as many problems as Holland does and sometimes…. it has so many more! So, in the midst of the weeds, find the tulips! In the middle of the storm, watch the windmills as they gently turn in the breeze. And remember that you are not alone in any of this! We are all in this together and together—we can help everyone understand what are beautiful place Holland is!
10 Responses to “Everyone has a Story! Meet Lianna and Gabe!”
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I totally feel the same way some days.
Hugs to you
Heidi mom of Joseph 11 (DS)
I felt the same way when I had my son with Down Syndrome. Now that I have a toddler who is regular, I am like why do I need to constantly teach them and why can’t they do it on their own. The second thing I feel now is regular means you learn and understand but still don’t want to be compliant and having special needs means you just can try to get away with it. It is hard to deal either way and parenting is so tough that most of the time it is me who does not have the patience and kind of hanging in there.
I to know how you feel I have those days to dayos where you just do not like people and there coments all kids are the same in some ways I have twins one has ds and the other does not
yes…there r days when i know there is a planet where everyone is like daniya.looks like her, behaves like her.there r days when i wake up and feel that i do not have the energy to go to another appointment.there r days when i feel tha t my strenght has gone away and i cannot cope.however i guess my daughter gives me such unconditional love and is such a joy to raise that i bounce back.i am so glad to read liana’s story and to feel that i am not alone and its alright to feel this way.
I remember hearing my mother say (I am a sibling of a DS brother) if I could just take him away and live on an island where he could be who could be and not what everyone else expects him to be or where life could be safe, life would be so much easier.
Everyday someone comes over to me and says, your daughter is beautiful, she has beautiful red hair, she looks like a doll, etc. I feel great and come home to tell my husband who asks “did they just say that because they didn’t know what else to say about her Down Syndrome?” That hits me hard. We fight, then I think about what he said and say to myself, “What if he’s right?”. Then my day suddenly turns upside down again. I’ve learned that what other people think means absolutely nothing when it comes to the whole picture. In my “new circle” I’ve met many children with special needs. Some with more severe issues, some with less. The one thing these families and their children all have in common is the amazing love that is so obviously flowing from their hearts. I am proud that God chose us to be a part of that “new circle”.
I have felt in the same way sometimes, but I found a video on YouTube that is my insperention. It’s the frendship between two teenegers, one is a typical kid and the other one has Down syndrome. After I so this video and know that the sociaty slowly will incluede our kids more and more, until one day they will be fully integrated into our sociaty. Here is the video from YouTube
http://www.youtube.com/watchv=9tTBSUPM_3U&feature=related
Yes Lianna, I too have many days like this and we will.
Its wierd sometimes I feel I have a sixth sense on how someone sees
my child like if I see someone looking at my child and I look back at
him and he looks like he has downs syndrome, then I know thats how
that person is seeing my child and if I see someone else looking at
my son and I look at him and he is just my son, then I know that
person is thinking, ” what a beautiful baby.” Ive never told anyone
that. Every parent, downs syndrome or not always thinks something
similar about there child. But just remember when our child
accomplishes something thats maybe more difficult for him because he
has downs syndrome, and he/she does it, isnt that feeling the BEST!!!
Arent we lucky to feel that feeling more often then maybe other
parents?
> Marriah Gideons mom
I COMPLETELY understand what you mean by being tired of teaching. You get to the point where you think, “Why does EVERYTHING have to be a lesson? Why can’t some things just “be”? Hang in there with your beautiful, wonderful, gift from God!
I have been in this same frame of mind many times. It’s okay! Just know that there are more of us out there that know the true joys of having children with MDS!
Hugs.