My Thoughts on Down Syndrome and Society.

This ended up being longer than I expected but it turns out I have a lot of thoughts on the subject and they needed expressed.  October is Down Syndrome awareness month and I thought this was a fitting time. 

 I was blessed a little over two years ago with a little boy by the name of Ronan who also happens to have Down Syndrome.  This is a fact I don't bring up when introducing him.  It's not like " This is Ronan. He has Down Syndrome."  This is because it has become more of a side fact and his Loving, determined, albeit stubborn at times, personality has overwhelmed any diagnosis he's been given.

With that said I learned rather shortly after Ronan was born that the abortion rate following a prenatal diagnosis for Down Syndrome is 90%.  I found that alarming and disturbing.   The perception people must have of Down Syndrome for 90% to terminate their pregnancies over the diagnosis.  There are tests out there being developed to make it easier to obtain a Down Syndrome diagnosis earlier and easier in pregnancy.  The stated Purpose of these tests is to prevent Down Syndrome births. 

The severity of this was driven home today when I was on a mom's message board I frequent.  A mother on there had had a nuchal translucency test and was told she has a 25% chance of having a child with Down Syndrome.  Based on that test alone her doctor told her she needed to decide whether to terminate or not.  It left me feeling sick.  There is a 75% chance her baby doesn't even have Down Syndrome and without even offering a CVS or amnio he wants her to consider terminating.

I was astonished by the idea that a doctor would push termination at even the hint of Down Syndrome as though it was this plague that needed to be extinguished.  Our society has come a long way.  Institutionalizing children with Down Syndrome is no longer what you do in America.  The schools have opened their doors and allowed children with Down Syndrome to learn right beside all of their peers.

Because of the brave fight of others before myself great strides have been made to welcome people with Down Syndrome into our communities.  The amazing thing everyone discovered was people with Down Syndrome can be and are productive members of society.  They hold jobs, go to college and get married.

One case I've talked about before but I'm bringing him up again because this baby holds a place in my heart.  He was never given a name.  He was merely called Baby Boy Doe.   He was born with the same two diagnoses Ronan was: Down Syndrome and Esophageal Atresia.  Esophageal atresia means his esophagus did not connect to his stomach meaning without surgical repair he would starve to death.  His parents refused to allow the surgery so the hospital took them to court.  And the courts ruled Baby Boy Doe was not a person and they could deny the surgery.  So they let him die despite the fact a family wanted to adopt him.

After that the Baby Doe law was passed where parents could not withhold life saving treatment from a disabled child.  Ronald Regan helped to pass this and He was quoted saying "Our nation’s commitment to equal protection of the law will have little meaning if we deny such protection to those who have not been blessed with the same physical or mental gifts we too often take for granted."

Honestly every time I think about Baby Boy Doe it makes me cry.  But even though a law has been passed to help future infants what about the abortion rate?  Have we really changed our opinions that much as a society?  Why is Down Syndrome the diagnosis no one thinks they can handle?  And it's the same thing even though there are waiting lists of hundreds of families who want to adopt children with Down Syndrome the abortion rate is still at 90%.

This should also make you think if there are so many families who want to adopt children with Down Syndrome then they must know what I already know.  Before Ronan I'd never really been around anyone with Down Syndrome.  But I can tell you with Ronan he is amazing.  He conquers everything thrown at him with great strength. 

He must of had a bad dream the other night because he was crying in his sleep. I picked him and rocked him and he clung to me.  I was thinking about how he only wishes for what every other child wishes.  He wants to be loved, he wants to be happy and he wants to be secure.  I have every intention of giving Ronan a full life.  I have every intention of ensuring he gets a chance at his dreams and desires just as I will my other children.  I will fight for him.  I've already had to.  But each battle gives me more strength and I know we'll make it.

Wrapping it all up if I could talk to a woman who has just been given a diagnosis of Down Syndrome for her baby I would tell her Down Syndrome isn't a death sentence.  This child will be one of your biggest blessings.  He will show you that the most amazing things happen in the small things.  Tiny victories are as big as moving mountains.  You will be changed and your life will be different but you'll come out on the other side and you'll be better for it.

Two and half years ago I sat stunned unable to think beyond the next moment.  I saw a huge diagnosis and nowhere to turn. I felt alone and I cried to God to help me make sense.  And he did in several very amazing ways. But now here I sit typing this and Ronan is no longer Down Syndrome.  He is the little boy who rushes over when I'm doing laundry so he can pick all the socks out.  He is the little boy who follows his big brothers around and watches their every move.  He is the little boy who tries to get out of his therapy by signing "Thank you" and walking away.  His favorite color is green, he can sign around 15 words and can understand more.  He recently learned how to ride a tricycle and he loves Elmo.

He is no different than my other children.  He is my son. Ultimately I wish that all those considering terminating because of  Down Syndrome would see what I see.  Their child will be their child not a diagnosis.

Photo Update #2

 I believe it is time for another photo update since it has been a few weeks since the last one.  It's strange to go from writing everyday to maybe getting around to it every few weeks.  Now I look back at that time and wonder how was I able to post everyday for a year.  My computer recently broke and was sent off to be repaired.  Thankfully it was still under warranty but it meant I got on less.  What have the Fullmer Rascals been up to the last few weeks?

I gave an update on Ronan in the previous post if you are wondering about him. Here's what's been up with everyone else.

Inara has been astonishing me and I have decided she is linguistically gifted.  Ok yes, I am a little biased.  I am the first to admit that but I think it is a good thing when your kids amaze you.  Because after all they are your babies and they are bound to amaze you throughout your life.  So whether anyone else is impressed or not I am rather impressed with her and I find it funny no matter how many kids I have I always find each milestone huge.

With that disclaimer in place I will go on to what is impressing me. She has always been good with words.  I still claim she was saying "Hi" at four months old. I have it on video and need to post it some time.  But now that she is 16 months she is talking full sentences.  For example the other day my mom hugged Ronan and said "Are you my baby?"  Inara came running over and said "I'm your baby."  She was as clear as could be and that is how she is on a daily basis.

She surprised me even more when the kids were playing Starfall.  It is a website that teaches kids the sounds of letters and phonics rules.  As the kids were going through the alphabet Inara would point at A and she said ""A" aaaa Apple.  Then she would go "B" bbbb Ball.  Then she did the same thing with "F" and "E".  I was shocked.  Where did she learn to recognize those letters let alone know their sounds?

I guess having a lot of older siblings who are learning to read is a big advantage. She came down with a tummy bug at about 3:00 am this morning.  She couldn't even get pedialyte down.  I decided to give her tummy a rest and then try Popsicles at dinner time.  It worked and she is now back to her happy, chatty self.

 In the world of sisterhood once in a great while I like to dress my girls alike.  I know this will fade as they get older because they will most likely view it as lame.  For now Mommy holds most of the dressing power so for now they get to dress similar on occasion so I can snap adorable pictures of them.  

Jadzia was a little disappointed that hers was green but I gave her the "Princesses don't always have to wear pink speech".  She was a little skeptical at first but after Daddy confirmed the accuracy of my speech she was good to go.

 This is the Fullmer Express.  The boys were doing school at this time or I'm sure they would have been aboard as well.  They joined in the fun later with a common event at our house: laundry basket races.  Basically there are two teams and each team sponsors a baby (as they put it) and they push that baby around in the kitchen.  The babies love it and I love it because it keeps all five kids focused on the same activity.  

  October means pumpkin time.  We missed the pumpkin patch this year but not the pumpkins. 

 Even the babies loved their pumpkins this year.  Ronan is currently obsessed with chairs and sitting in them.  I guess he decided pumpkins make good chairs. 

 Of course we couldn't break Fullmer tradition we had to carve the three oldest's.  The boys both wanted faces and Jadzia chose a bat cat.  

Now what have the big guys been up to besides Pumpkin fun?

Jadzia has been very busy being a princess.  She now wears her crown everywhere.  Her Grandma bought her one that lights up so now it serves as nightlight.  I dread the day it burns out. 

She is also doing a good job in school and is learning all her letter sounds as well as how to write each letter.

Xander is also doing well in school.  He's a bit stubborn but I've found creative ways to keep him focused.  He's extremely bright and that seems to serve as the problem most of the time.  But he's been more enthusiastic lately because he read his first word and has now figured out the sounds I was making him memorize were not useless noises that I designed to bore him.

Landon is doing amazing.  His reading has taken great strides in the last few weeks.  He is reading full books by himself.  He is also writing sentences.  He soaks everything up and is very eager to please.  I often find myself telling him not to apologize when he doesn't understand something.  I think he is a bit of a perfectionist.

 Well that's the latest on the Fullmer clan.  I'm really liking these photo updates and I think I may continue to do these. 

Ronan update

Here is a Ronan update.  After this one I will post a separate photo update so everyone can see what the other kiddos have been up to. It's just Ronan's update is extensive so I thought I'd make them separate. I have been getting a lot of inquiries into how he is doing.  This last Saturday he woke up and was unable to keep any food down.  This is odd since with the Nissen surgery he shouldn't be able to throw-up at least not without a lot of effort.  By lunch time I knew something was up.

I called his surgeon who told me he thought Ronan had a hard object stuck and to take him to the ER.  My instincts told me differently I knew his esophagus was closed again and that's exactly what I told Isaac as we headed out the door.

They gave him an upper GI and the liquids were going down fine.  It was seeming to me like I was being perceived as a crazy paranoid mom and they were just going to send him home.  So I told the ER doctor I don't care if the liquids went down fine the issue is pureed foods just as it was the first time.  She ordered an x-ray and the x-ray showed it had indeed narrowed.

They called his GI doctor.  I have to say his GI doctor has really stepped up on Ronan's behalf.  Instead of making us sit in the hospital until Tuesday (when he normally does endoscopies) he put an emergency team together. We were the only people on the entire surgery floor.  After the procedure was over the doctor showed me the pictures of Ronan's esophagus and it was closed completely again.

I had been right he didn't have an object stuck it had closed up again.  For moms out there I'm beginning to realize more and more you know your kids better than anyone else even the experts and more often than not you know when something is off and when you get that gut feeling you should go with it.

I was a little frustrated though when we went back to his surgeon a few days later for folllow-up.  His surgeon is the one who did the fundo and his GI doctor is the one who keeps dilating Ronan.  Therefor the surgeon did not see him on Saturday and admitted he hadn't seen the pictures or anything. Still when I told him Ronan's esophagus was closed again the surgeon said "It probably just looked like it was closed in the pictures.  It was probably fine."

Right. That is why the person that dilated said it was closed again and Ronan couldn't get food down again until after it was dilated.  His surgeon openly admitted that since he has never had this complication arise in 30 years of preforming this surgery he has no idea what the prognosis is or the right way to proceed.  I did not find that too comforting.


Basically now his surgeon wants to dilate him forever every two weeks to see if it finally decides to work and his GI doctor only wants to do it one more time because he is concerned of rupturing Ronan's esophagus.  His surgeon is worried about having to repeat the surgery.  I guess it all comes down to liability with the doctors.  Which I total get but what about my son.  They need to quit arguing and come up with the best possible solution with the known facts or Mama Bears going to come out and make the decision for them.

For now that is where we are at.  He has his next dilation on November 3rd and we'll go from there.  All I know is the thought of putting him under every two weeks sounds awful especially since his airway closes every time he is put under and he always needs steroids to fix it.  What a crazy road this one surgery has lead us to. 

 

Photo Update

I don't really have too much of an update.  I thought this would be mainly a picture post.  For everyone wondering.  Ronan is doing great and back to himself.  He and his brothers put on a comedy show today.  They thought they were the funniest brother trio ever.



















All the kids have been loving Ronan being home.  Jadzia likes to shower Ronan with frequent kisses.  Ronan isn't always so sure.  I mean big sister kisses can be embarrassing.

Jadzia's name is Polish for Princess.  We didn't know when we named her how fitting her name would be.  She is definitely our princess.  I found a Princess dress up set on sale and thought of Jadzia immediately.  It was pink, sparkly and included a crown.  She felt very beautiful all day.

 If you ask her whose Princess she is she will without hesitation say "I'm Daddy's princess!"

 While Jadzia has always been her Daddy's Princess Inara is her Daddy's Duchess.  Her middle name Nerys (Nuh-reese) means noblewoman and maybe Isaac adapted that into Duchess.  I'm not sure all I know is he calls her his Duchess a lot.  So when I found out they were coming out with a duchess Lalaloopsy doll I knew this would be Inara's first Lalaloopsy doll.  Jadzia already had the princess one so here are the Princess and the Duchess with their lalaloopsy counterparts.

 They are pretty goofy sometimes and I often catch a range of expressions when I capture several pictures of them.

 Inara has begun doing something adorable as most things she does are.  Ok I'm a little biased but this one is rather cute.  She has began to put both hands up to her face and let out a very quite almost whisper of a scream.  Look at the below pictures and you will probably agree with my original assessment that she is too cute.

Last Photo of the night is of a very unconvinced Inara.  She thought she was just fine staying up all night. She kept saying "All done night night."  Her eyes disagreed with her.