Taking the high road…

Today’s post brought to you by:  complete ignorance. 

I’ll start off with a quote from the great Caroline Manzo from The Real Housewives of New Jersey:  (in my best Italian slang…) 

“Let’s me tell you a-something about my family…We’re as thick as thieves and we protect each other ’til the end.” 

Now I’m no Jersey badass or anything, but this saying is perfectly parallel with our family right now.  Because you see, we have never been stronger.  We have never held on tighter or loved deeper. 

Don’t like what I do?  Don’t acknowledge it.  Don’t like what I write?  Don’t read it.  Don’t like my cause?  Don’t support it.   

We have encountered our first round of unnecessary remarks about Tessa…and might I just say that some people are really unaware of the magnitude of their words word vomit.

I am still trying to wrap my head around what would go through a person’s head before making fun of my Tessa Bug or Casin–or any child.  I am not exactly sure what a newborn baby (with or without Down Syndrome) and a [then] six-year-old could have possibly done to be the butt of an extremely inappropriate joke.  By the way, the joke definitely was not as funny as it was apparently thought to be.

It…is…unbelievably hard to not completely stoop to the level of a bully, especially when the targeted victims are your babies.  My husband has reminded me to stand strong and not give in to my inner temptations of bitchery in a situation like this.  ‘Cause this mama went into full-blown “beast mode” that even the Brewers at their best wouldn’t be able to contend with. 

It is always so easy to look at from the outside and assume whatever it is that may be assumed.  Unless anyone has walked a day or even a mile in my shoes or any other special needs person’s or parent’s, then no one should never be able to speak on matters in our lives.  Because trust me, no two situations are the same; therefore, how can anyone have an educated “opinion” about my family or my children.  So before people go judging, they should know a few things…

Here are a few things you may or may not know about this special needs mama:

1.  I’m exhausted.  Even though Tessa is a great baby, I am still wore out.  Outside of being at home with her all but two days a week, I help my hubby run two busy businesses, maintain a household, a seven-year-old, a husband, a life, etc..  I am 100% positive that all mothers in all situations can absolutely relate to this…special needs or not…So instead of assuming that I just sit around all day because I don’t go into a specific building for work, come spend a day with me.  I’m whooped… 

2.  I’m self-conscious.  Having a baby really heightened my sense of self-awarenss.  So take it easy on the baby weight jokes…Again, I think a lot of other moms can relate. 

3.  I’m deep.  Having a baby with special needs has allowed me to evaluate almost every aspect of my life in a relatively short amount of time.  I’ve done a lot of searching for answers, and I’ve searched great depths of myself to find strength to get through the hard times because there are times when I just feel alone.  I have feelings.  Yes, I admit they may be a little more sensative but they still matter. 

4.  I’m a fighter.  One of the first things that came to my mind when we were blessed with a DS diagnosis was how badly Tessa would be bullied.  And while I think my original fear has since withered away, there are parts of my that know that some people will always be cold and cruel.  Having said that, there will never EVER be a time in her life that if she is bullied that I won’t be too far behind her defending her for things she can’t control.  There is far more than love in my heart for my baby–there is a fire that’s fueled by every great achievement of hers and by the naysayers who want to push her down because of an extra chromosome.  I’m a mama bear protecting her cubs from a painfully harsh world, so don’t plan on me backing down now or ever. 

5.  I’m an advocate.  I’m convinced that my job on this earth is to teach others about Down Syndrome and to show the beautiful reality of it.  Every piece of information I receive about Tessa or any part of her Down Syndrome, I gladly pass on to others–whether it’s on my blog, in private conversation, to family or friends, my facebook page, etc.  I will preach about Tessa’s Down Syndrome until words are no longer a part of me.  I will host walks, I will do fundraisers, I will write blogs, post pictures, write books, and do whatever I can to spread a positive message about power of an extra chromosome. 

6.  *MOST IMPORTANTLY-I’m ordinary.  I know there have been times when people thought, “I am glad that is her and not me.”  I get that.  However, surprisingly enough, I am an ordinary mom.  We are an ordinary family.  I get up every morning, make breakfast, feed Tessa a bottle, help Dan with paperwork, and have a perfectly normal daily routine.  At night, we eat dinner as a family, we watch tv, plays games, and go to the park.  Just because my daughter happens to have Down Syndrome doesn’t mean that my family is any more different than anyone else’s.  We are a lot more alike than we are different.  I’m a mom just like all the other ones out there who dreams of these things for her children –love, acceptance, and success.

Before anyone makes fun of Tessa or her brother, or has something ridiculously stupid to say, I advise them:  USE YOUR HEAD!  I have to question that if someone is so oblivious to differences, of any kind, should their opinion really matter?  A little.  I will be heard on some level.  I may be all of the things above at different times, but I will always be their protector.   

It frustrating to know that unfortunately Tessa and the rest of my family has already had to deal with harsh remarks and moments of ignorance, but a fellow mama of a daughter who happens to have Down Syndrome told me:  “… please know that for every crappy moment like this that you have to endure, there will be a million amazingly happy and loving moments to help you forget them.” 

I’ve questioned for a few days how we should handle this and I have come to the conclusion that we will be approached with an opportunity to do so when the time is right and even if we are not heard, we will know that we can count on each other and our children can count on us as well. 

We know that there will always be moments like this…

and this…

and this…

and this…

…where chromosomes don’t matter and family does…moments like these when different doesn’t equal less. 

I won’t let this one roll off of my back just yet, but I am going to absorb some advice and take the high road even if it takes a while to get there. 

Advertisements

5 thoughts on “Taking the high road…

  1. Love this. I can relate to everything you said about being a mom of a child with special needs. Not only do I have Tessa, I have a 14 yr old with Aspergers & sever anxiety, and of then an 8 yr old with too much energy. The pictures of your family are beautiful. I am so sorry you have to deal with people who are mean, I think we all do and will. Keep taking the high road & remember you are amazing parents!

  2. You are one strong woman!!! Keep up the great work! Don’t let this D-BAG knock you down! He obviously has some issues to attack your kids for no reason…………..karma is a bitch!

  3. It is so sad to see all of the ignorance that people have to any type of disability…. Hang in there… you are the only one that know what is or is not right for your children… no matter what people may say or think!! Stay strong (I know it is easier said than done!)

  4. I am also from Southwest Wisconsin & have a little girl with DS. Her name is Annabella but people call her Anna or Bella. She is 2. Where do you live? My daughter was born at a Lancaster Hospital. Our story was a little different. DS was not even on the radar until she was about 2 days old. Our greif was very similar to your experience. Please feel free to look me up on Facebook, my name is Dharma Doll. I have lots of pics of Bella on there. If you ever want to chat or anything let me know. My email is dnjdoll@yahoomail.com. Thanks, Dharma

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s