Tuesday, August 2, 2011

Tell me how you really feel (part 2)

(just as shattered as I have felt)

(and my venting continues… Read part 1 HERE)

It is no surprise how passionate I am about our local Ds association. They do so much more than what others might think. I have heard plenty of times from moms about their agonizing experience when their child was first born and the lack of support and information from their doctors those first few days. Our association has a medical outreach program. It is still fairly new but they are trying to reach out to those doctors and hospitals and update them on the reality of Ds. They don’t want any more mothers to feel devastated on a day that should be so glorious. They are on top of the new non-invasive prenatal test and governmental affairs and much more.  They want to help YOU, your children and the next generation of children with Ds. 

So yes, the lack of support is mind-boggling!  The lack support in my own community is a kick in the gut. And I don’t live in some remote town in the middle of nowhere. 

Then there is the ever so controversial Down syndrome research. I am ALL for Ds research. NO I am not looking for a cure, nor I am looking to change Ethan, but if I can improve his life and give him a better shot at having an independent and fulfilling life, well I am all for it then. I want the best for my girls, why would I not want the best for Ethan. Improving his cognitive abilities does not mean I am changing his personality. He will always be Ethan.  And if it means he will have to take meds, well so be it. There are typical people out there who have to take meds to keep them stable, whether it is for mental or physical health. Why does it have to be any different for my son?
But parents with children with Ds just don’t push hard enough.  How is it that more funding goes to research for other less common conditions? 

OH, but heaven forbid that someone doesn’t use PC terminology to refer to our children, and then we have thousands of parents trying to kick these people in the throat. I am all for PC terminology for our children. I want people to see my son for who he is… ETHAN.  But why cant the Ds community come together like that when it comes to others issues our children face. Lets be more than just these overly sensitive parents. Lets show them what we are made of. Lets take out the big guns and make them fear, we are not parents to be messed with. Not only are we concerned with just what people call our children, but we are also concerned about lack of health benefits, lack of acceptance, lack of research… and so on. Maybe that is why the rest of the community doesn’t take us seriously. Maybe we are just a joke to them. The only time we seem to rise up is when someone wrongfully calls our children an inhumane name. We should be fighting just as hard with these inhumane lack of rights and privileges our children have. 

Down syndrome doesn’t scare me. I am no longer intimidated about meeting or being around adults with Ds. I wouldn’t want others to be intimidated about meeting my son when he is a grown man, so I had to work past those feelings.  I cannot fear what Ethan might or might not be when he is a grown man. Only time will tell. We will get there. And whatever it is, we will make it work and we will love Ethan. Unconditionally. I understand that it is a process to reach that level of acceptance, but it is a level that must be reached.

I cannot spend one minute feeling sorry for myself or Ethan. I have incredible faith that Ethan will do just fine. I have incredible faith that we as his parents and his sisters will make it through this with smiles on our faces in the end. I will curse Down syndrome one day and I am sure it will happen more than once… but I will not dwell on the negative feelings. Prayer. I will survive through prayer and believing and knowing that God is good.
I cannot help Ethan, if I cannot help myself first. 

And I am sure I have offended someone, somewhere in this post… NOTHING on here was directed to anyone. These are simply feelings and thoughts of my own, things that have been bothering me for a good while now.  I do hope I have stirred up some feelings in some of you. Hopefully enough to reevaluate your journey and how you can improve this road our children are on.  We need to pull together. If we don’t, I am not sure anyone else will.

P.s. – just wanted to add that I am not stronger than anyone else, nor do I think or feel I am better than others. Nor do I know everything… (sometimes I do…. JUST KIDDING) Before someone wants to bash me for my own feelings. I wasn’t bashing anyone for their feelings. Once again I was simply stating my own.

*of course –more beach pictures… it’s a family thing.



  1. I love the idea of a medical outreach program/group. What a difficult job, there are a lot of closed minded medical professionals. We were also given only bad and negitive info. In regards to Ds, but I wouldn't settle with that. :)

  2. Loved this post Erika! I have to say, it made me stop and think...About a lot of things. Put some things into perspective for me, big time! Honestly I am ashamed to admit I didn't realize there was such a lack of research or funding when it came to Ds...Living in the more remote area like I do I havnt yet learned where to go to see whats out there or whats going on...Makes me wonder what more I can do!
    I do have to say though...Seeing how motivated, determined, and strong spirited you are does make me feel a little bad...Because I do still have moments where I am scared or sad...Its hard to admit those feelings knowing so many other Moms are at such a place of peace. Anyway...Like I said before, I always love hearing others points of view, whether I can relate to them or not...It only helps to open my mind a little more. Thanks for sharing your thoughts with us :) It was an excellent post!

  3. And Jenny, it is so hard for me to admit my feelings as well because I dont want to upset or discourage or make others feel differently who are not there yet either.. there really isnt a right or a wrong. It is a process. And for my state of mind and inner peace, I had to push to be where I am at.

    It also helps that I have a lot of *real life* friends with older children with Ds, from 5yrs to early 20's. Being around them has put this reassurance in my heart. I give them lots of credit. And thank you!

  4. too many thoughts in my head to say anything really but well said. The dearth of research is a cold shock to me, a weight on my heart.


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