One of those days.....

I guess you could say I'm "having one of those days" - a day where you want to cry a few tears.  There are several moments here lately where the thought of having another baby crosses my mind.  Being completely honest - there are a lot of those moments.  I'm not getting any younger and Beau's getting older but as they say, all your ducks need to be in a row first.  There are a few things that need to be in order before taking such a huge leap, but on top of that there is always that underlying fear of "what if"?  What if, we got pregnant again and the baby had the same diagnosis as Beau or something even worse?  What if, we had another miscarriage and another partial molar pregnancy? 

So far we've had two pregnancies.  Our first was our wonderful Beau.  The labor was smooth, but the delivery was scary and Beau was in the NICU for a week.  Seventeen months later came the diagnosis.  In between that time, a second pregnancy.  This one ended in a miscarriage at 10 weeks as well as it being a partial molar pregnancy.  The molar pregnancy was scary, resulted in two D & C's in one week and blood tests for almost a year to clear any chance of cancer in the uterus.  Deep breath......so you can see why there might be some nervousness but yet a strong desire to have a healthy "typical" child.  Please don't get me wrong, I love Beau and am so grateful for the gift God has given our family with him.  He's given us such amazing strength and inspired us to go out and do great things in our community and hopefully one day other parts of the US.  I just want to experience what a lot of other families experience - the joys and struggles of raising a typical child; a child that hasn't had more doctors visits in 3 1/2 years than any adult has ever had.  I'm so lucky for the things that Beau is able to do and I'm so lucky that he doesn't have some terminal illness.  I'm lucky that he is so loving and so charismatic.  Like any parent though, we long for more.  Because of Beau's loving personality I know he'd make a great older brother.  He'd protect a sibling and love them unconditionally because that's Beau.  I think there's a lot that a sibling would give him as well.  They would also show Beau unconditional love and protection. 

I'm lucky I have a child as there are many that can't even have that, but as selfish as it sounds I'd love to have a sibling for Beau.  I have my fears because of his diagnosis but we've had the genetic testing done (not that, that guarantees anything) but we would be going at this for the most part, informed.  Hopefully it will be our turn in the near future.

Beau taking baby for a ride!

The "Short Bus"

Some of my Facebook friends may have already read this story, but I was reminded of it again and thought I would post it on my blog.  I wrote this in November of 2010 but I felt it was one of those stories that was important to revisit as we prepare for school in August.

I take Beau to a group called "Transition Group" at Castle Hill School in Waterloo.  It is a group that helps prepare him for preschool.  It also helps the special education teachers evaluate him to determine what his needs will be once he starts school.  All in all, it's been a great thing for Beau and because of his exposure to daycare and other children, he does really well with it.  While the children attend the one hour session, the parents (mostly mothers) sit in another classroom and discuss several different topics.  Last Thursday was the final day of this session for Transition Group and one of the school social workers was discussing with us what decisions may lie ahead for us.  On this particular day there was a mom with a little boy who will be 3 next month that was born around 24 weeks and has chronic lung problems as well as a deformity in the roof of his mouth from being on a breathing tube for so long.  This little boy doesn't use many words and struggles with eating because of the mouth deformity.  There was also a 51 year grandmother there with her 3 year grandson who has some speech delays.  That child has a father who is in prison and a mother on meth.  Needless to say, we all have our issues.  I was in the group of course and the last mother there is a mother of 2 children. Her older child who turns 3 (we'll call him "Jack")  in a few weeks is delayed in speech, but otherwise healthy with no known disabilities or abnormalities. Her little boy has made huge improvements by coming to group and Beau loves the little boy and according to the mother, of the few words her son says at home, Beau Beau had become a part of his vocabulary.  This child went from crying so hard that he would have to leave group, to crying for only about 30 seconds after mom dropped him off in the room. Our discussion last Thursday came to busing for the kids.  I said how I thought Beau would love to ride the bus b/c he's a little boy and absolutely loves anything big and on wheels!  The social worker said they are the little buses and they are only allowed to haul around 6 kids at a time and they have the full harness system.  Jack's mother then said and I quote, "I would never do that to my son."  My first thought was that she was scared of putting her little man on a bus and sending him off, which is completely understandable.  Except she kept talking and said, "Could they park the bus in front of my neighbors house?  I don't want anyone to see the short bus parked in front of my house".  Yep - she really said it.  The look on everyone's faces had to have let her know that she was way out of line.  At this point I'm shaking I'm so angry, but before I could say something, she said, "I'm embarrassed when I take Jack out in public around other kids his age that can talk normally and my son just grunts and babbles".  At this point I was shaking and tears were starting to well up - tears of anger.  I let her have it.  I reminded her at first that she should praise God every day that she has a healthy beautiful little boy that she most likely won't be able to shut up a year from now.  He doesn't suffer from chronic lung disease, he isn't confined to a wheelchair or have seizures or fall over all the time because his balance is out of whack from a brain abnormality.  I told her that I would be proud to see my son ride the "short bus" and she should be proud of her son as well.  I asked her if she planned to seclude him all his life because she was embarrassed he wasn't up to speed.  Or if once he was up to speed, she planned to seclude him from children like my son.  She said she wasn't secluding him, but it seems to me that's exactly what she's doing by her own admission and ignorant comments.  I don't care if you think those things, but please know your audience before you let those comments come rolling out.  I feel so sorry for Jack because he has to grow up with a parent with that kind of ignorant mentality.  Just a little lesson to everyone out there.  At any opportunity teach your children about the beauty of people's differences and acceptance and always, always be careful about joking about kids riding the "short bus" - at least around me please!

Not long after I wrote this, I attended a holiday party where a woman in her 60's, with no children, made a "short bus" comment.  We were playing the game Apples to Apples and someone made what she thought was a stupid comment to which she referred to them "riding the short bus".  As adults we are all guilty of making ignorant comments at some point in time.  My point in re-posting this story is to remind other adults that children hear what we say and they learn from our examples.  If this story causes one person to avoid a "short bus" comment then I feel like it was worth it.  I remember how mean kids were in elementary, junior high and even high school and I didn't have a disability.  My hope is that as parents we can teach children a level of understanding and acceptance so that these kinds of hateful and hurtful comments don't get passed along. 

Beau on the bus with his friend.

Upcoming NODCC Family Partnership Gathering

August will be here soon and I can't wait for our Midwest area to get together in Minneapolis for our NODCC regional gathering.  I have organized this event in the hopes that families (affected by a disorder of the corpus callosum) from Iowa, Minnesota, Wisconsin and any other surrounding states might attend and find comfort in meeting others that "understand".  I was certainly hoping that more might step forward and be able to attend, but as of right now there are only 3 others families besides ours that are coming.  Some is always better than none, so I am grateful for those that are able to attend.  It will be an awesome day with a great meal, great opportunities to talk and then fun at the indoor water park.  We plan to follow it up the next day with a trip to the Como Park Zoo in Minneapolis.  It will be a nice little vacation for our family from Iowa and we'll be able to make some new friends as a result. If anyone else is interested in attending, please contact me for details.  The more the merrier!

The results are in.....

Beau's endocrinologist called me this afternoon and let me know that all of his lab tests came back normal.  Ahhhh deep breath.  Love, love, love hearing good results.  The pituitary gland is working like a champ right now!  Yay for a good pituitary gland :)

Endocrinologist - Iowa City, Iowa

Yesterday we made a routine visit to the endocrinologist at the University of Iowa Children's Hospital in Iowa City.  She deals with the pituitary gland in the brain.  On Beau's MRI it showed an absent posterior pituitary bright spot - whatever that means.  Apparently children with disorders of the corpus callosum can have 3 main problem areas; the pituitary gland, the optic nerve and of course the corpus callosum.  His optic nerve has looked great at previous appointments with the ophthalmologist and his vision is awesome, so we aren't really worried too much about that.  The appointment went well and the doctor says that Beau is looking great and growing normally so she is fairly certain based on her physical exam and information we provided, that Beau is doing fine.  She did a whole lab work up and unfortunately they had to poke our little man twice to get his blood.  He was a trooper though and was very tough about it!  Now we wait for the results to come back and we pray that they will all be normal.  If they come back OK, we can now start going to the endocrinologist yearly instead of every 4 months like we have been.  That's a step in the right direction!

Here's a picture of Beau doing his "car dance", but for today we'll call it his "happy dance" because his appointment went so well!

Over 100 - Get in the pool!

This evening after a big dinner (it felt like Thanksgiving dinner) of turkey, real mashed potatoes, homemade rolls and fresh strawberries, it seemed like a good night to fill up the baby pool and let Beau go swimming.  He was so excited just watching me fill up the pool.  It's been sooooo hot and humid here and today the temps were in the 90's with heat indices around 100 degrees - yuck!  I just wanted to share the pictures from our evening fun!

Since we don't have a boat - the car served as one!

Beau signing "more" for more splash!

 It was a great evening together.  Tomorrow will be a full day with Beau's EDI therapy in the morning and an appointment with the Endocrinologist in Iowa City.  It's just our routine appointment but they will be checking lots of blood levels related to the pituitary gland in the brain.  We continue to pray for the same normal results we've gotten every visit so far.