Where were they before?

I just don’t understand it.  Before my daughter was born with Down Syndrome I think I just had met about 7 people with Down Syndrome.  This is not that many people considering I met 6 out of those 7 in a professional capacity as an RN.  Over the course of about 15 years as a health professional in very busy hospitals I only had 6 Down’s people as patients!  I only met one outside of work that I can recall.  Not too many at all.

Suddenly my daughter was born and naturally I met many of the children at her school as well as some of the young adults with DS that work there and young adults with DS at various fundraising events at the school.  This seems natural enough.  What surprises me is all the OTHER Down’s people I have met outside of this environment. 

Sometimes I will be at the park or the mall and I will meet another parent/grandparent and we will get to talking and I will find out they have a sibling, neice/nephew or child with DS.  Other times I will be shopping at Stop and Shop and lo and behold there are ALL these folks with DS working there and helping me bag my groceries etc.  Were they here all along and I just never saw them before?

I can’t tell you how excited I get when I meet somebody with DS.  You would think I just met a famous celebrity!  I am not sure why exactly I get so thrilled.  Is it because I am glad to see them OUT there and doing well?  Am I just nosy to see if they are happy and are being being treated well?  I guess I feel like it is giving me a glimpse into my daughter’s future even though I know each individual’s experience is different.

If I spot a parent with a DS child and they seem friendly I love to chat with them and say, “I have a daughter just like your child.”  Usually the other person is just as excited to hear this.  What a weird phenomenon!

And you should see my older brother!  We are not that chatty on the phone, but if he happens to meet somebody with DS he immediately will call me later in the day to report to me all the details.  (For example he will tell me that he just found out about a coworker who has a 13 year old DS daughter  and that she had heart surgery years ago and is doing so well and if I have any questions I can call them etc.  Or he will report that he saw a group of DS folks shopping for groceries together (perhaps from a group home?)  and he can’t put his finger on it but they did not seem as happy as some other DS folks he saw at other times and he wonders why they seemed a bit glum to him?, etc.)

But that’s not all!  I have met a whole world of handicapped people.  I will be with my daughter and people say to me, “My son has Aspergers,” or ”My daughter is autistic.”  I go to our local mall and suddenly I see all these handicapped people being brought in large groups for shopping and lunch.  How did I not see all these people in wheelchairs and helmets before?  Was I blind before?  Was I looking the other way?  Now it is such an odd thrill!  I feel such a special camaraderie with all these folks like we are all one big family.  Has anyone else felt like me in this situation?

At first I used to observe these groups at the mall in particular.  I used to watch and wait for somebody to be cruel and non-accepting of them.  But surprise, surprise!  I am more surpirsed by how kind people are than by their cruelty.  Sometimes I would be sitting in the food court and see a bunch of young “houligans” and hold my breath thinking something awful would be said.  But no!  Another time I was in the Stop and Shop and I saw a mentally challenged employee chatting the ear off a particulary coarse and rough looking coworker. I knew it must be getting a bit tiring for him and I also knew he thought the two of them were in the aisle alone.  I expected the man to be short with this guy but imagine my surpirse when this rough fellow was so patient and asked him to tell him more about whatever he was chatting about!  I guess I should learn to think as my daughter’s OT does.  She helps train young adults for these types of jobs and she just says, “Why shouldn’t people be kind to them?”  I guess I am just surprised at how kind people are.  Yes, occassionally I have witnessed somebody say something insensitive or even cruel, but 99% of the time I have been surprised by the goodness in people.  I have heard that the handicapped bring out love and compassion in others but never realized to what an extent!  I am sure others have had similar experiences.  At least I hope!  Please share.

Anybody out there?

Hey is anybody out there reading this stuff?  Please let me know!  Anyway, I took my daughter to the endocrinologist for a routine check up today and everything looks pretty good.  Is it just me or does it feel like a full time job to just take care of all these appointments?  We see the endocrinologist every 3 months, the ENT every 3 months, the eye doctor every 6 months, the cardiologist, the orthotist, we have CPSE meetings, etc etc.  My poor daughter sees more specialists than an 90 year old woman!  (Believe me I know.  My grandmother is 101 years old and I don’t think she goes to the MD as often as my daughter does.)   I don’t mean to complain.  I know it is not so bad and that things could always be worse and I am grateful for her health.  I am just wondering if anybody else is finding it EXHAUSTING at times?  Friends/relatives with typical kids will call to ask for playdates and to meet up and I just want to RELAX on the odd day that we have no appointments. 

If there is anybody out there please comment.  I’ll try to make the next post a bit more positive.  Usually I am not this crabby it’s just that I was out from 12:45 to 4PM just dealing with this appointment stuff.  ARRGHH!

Hello world!

I am a married mom of two children.  My oldest child is a three year old girl with Down Syndrome and my youngest child is a two year old “typical” boy.  Upon hearing the words, “We think your baby may have Down Syndrome, we felt we had a rough road ahead of us.  It has instead become an incredible journey that has surprisingly been filled with much joy!  My outlook on life has profoundly changed since my daughter has come into our lives.   I plan to use this blog to share our story in the hopes it will help others.  I also want to learn about other people’s experiences as well.  Please feel free to leave your comments, stories and questions and I will try to format my blog in a response to those contributions.  I don’t anticipate this blog being anything too formal.  I will appreciate any contribution.  I have a sense of humor and I am pretty open about my experience so don’t feel shy about asking anything about my experience with all this.  Likewise I will not be judgemental of anything you may say unless it is truly disrespectful to people with special needs.