Fall is Here!!

We had a jammed packed fun weekend!!!  We kicked it off Thursday night by watching Alex play football for Homestead’s JV team. Then we decided to return to the field for the varsity game on Friday night.  Saturday was spent going to watch Tommy play football, then Ben play flag football, and then Joey play football.  After all of that football, it was nice to change things up a bit and watch baseball Saturday night!!!  Now, I know that my sports filled weekend might seem a little over the top for some people.  And I will admit that by the time football season is over, I am pretty footballed out!!  But for now, I can’t imagine spending a better day than watching my boys run, block and catch passes!!  PJ seems to love it too. ( I’m not sure if it’s the fact that he gets to stuff his face full of goldfish and popcorn during games.)  But I do know there are quite a few people who seem more fond of watching PJ than the actual game!!!  And when people get excited he starts to clap.  (Sometimes for the wrong team!)  When you say “touchdown” he will throw both of his arms up like the refs do!!

Saturday night, PJ was able to see his first Brewer’s game.  Our family was lucky enough to be invited by the good people at Foley and Lardner to watch the game from their company suite!!!  He loved standing and looking out at the field.  Usually, people would walk by and try to say something to him.  (There was one security guard who stood close by and every time he so much as looked at PJ , PJ would cry.)  I got to spent the night doing what I love most, hanging out with my family and my newest obsession, talking about Gigi’s Playhouse to anyone who will listen!!!

Sunday, was much more of a laid back day.  My sister Becky drove up from Chicago with her husband Tom and their son Sean.  We played in the backyard for a little while and then we took off to Cedarburg for the Wine and Harvest Festival.  PJ slept through the first part though!!!

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We got some great pictures of PJ with his brothers and cousin Sean though after he woke up!!

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We left Cedarburg and decided to stop at the apple orchard on the way  home!!!  PJ and Sean were both too tired to go apple picking though.  (That’s okay because PJ gets to come back on Thursday with his YMCA class!)  But they had fun playing together!

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Happy Fall everyone!!!

Preschool!!!!!

Wow, so much has happened since I last posted.  I’m sorry it’s been so long between updates.  Life gets busy when you have five kids!  The biggest development for PJ is that he has begun the 2 year old preschool at our local YMCA.  He loves it!!!  He is the only non-typical child in the room.  I spoke with the teacher last spring to see if she thought she could handle it.  I then rechecked with her in the summer, and then again about two weeks ago.  Each time she reassured me and told me to sign him up.  Well, I finally did and he began yesterday.

I hate to admit that I was that mom that drives preschool teachers crazy.  I didn’t leave the room for the first half hour.  PJ was happy and having fun, but I had to make sure.  I was worried about everything, from him sitting in a chair all by himself to him being able to participate in any activity they tried to do.  At one point the teachers were helping all of the children wash their hands.  Those who were finished were sitting at the table and being led in singing “Old McDonald” by one of the teachers.  During snack time, PJ kept staring at the wall of mirrors and singing and signing Old McDonald had a cow!!!  I was one proud mama.

PJ still isn’t walking but I think he’s getting close.  His physical therapist told me she wasn’t happy with his level of progress and sent us up to Sheboygan to be fitted for a Spio suit.  The best way I can describe this suit is that it resembles a mix between a bullet proof vest and a wrestling uniform.  It’s one piece that will velcro together.  In the front it is made of a type of performance material, similar to the under armor the older boys wear to football.  The back is made of a type of neoprene material.  PJ fell asleep in the car ride up and woke up as soon as we got there.  The therapist put the suit on him and put him down and PJ took three purposeful steps.  It was amazing.  I asked this therapist what the oldest age he has ever had a child with Down syndrome start walking.  He told me 12.  That just about knocked the wind about of me.   But he then went on to tell me that PJ was very close.  He could see that he needed to increase his core strength and needed more body awareness of his core muscles.  That is exactly what this new body armor is designed to do.  So, I’ve decided to call his new suit his “super hero” suit.  He has to wear it under his clothes during all waking hours.  (It’s really hot here now but is supposed to cool off in a few days)  The only drawback I find to it is that it really increases his amount of reflux.  But we will live with that.

I was talking to a friend yesterday about PJ and beginning preschool.  I really debated about whether or not to sign him up because I just wasn’t sure he was ready.  I am not sure how much of my concern was based upon my clearly lower expectations of PJ.  PJ seemed to do as well as most other two year olds in the room.  I know he is my baby but I need to raise my expectations because I know if I do he will meet and exceed them!!!  Way to go PJ!!

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How did I get to be “that” mom???

Oh no.  Today is the day I came to the realization that I have become “that mom”.  You know the one.  That mom who holds her kids sippy cup for him while he takes a drink.  The mom who holds her child as they walk to the car because he doesn’t walk well yet and might fall down.  That mom who still nurses at 26 months  (yeah, that mom).  I don’t know if I’ve allowed myself to be this way because PJ is my baby, if it’s because he has Down syndrome, or if it’s just that he’s had so many surgeries I still look at him like a baby.  The reality is that although he is 26 months he is not walking and is only pulling up to stand in his crib or when he has something to wrap his fingers around.  He isn’t cruising yet.  He doesn’t speak (although he will sign.)  But today is the day I realized that much of what I do enables him to stay and act like a baby longer.

David’s been talking to me about this for a while now.  He hasn’t pushed me to give up nursing, I only do it twice a day anyways.  But he has been asking me to start thinking about when I might be ready.  I’ve been using the excuse that sometimes he wakes up in the middle of the night or at five in the morning and nursing is the only way to get him to go back to sleep.  But this is really just an excuse.  The reality is that he rarely wakes up.  I would never have even considered letting one of my older children have a bottle this long – let alone nurse them.  I always gave up nursing when they were between 5 and 9 months.  I was anxious to stop.  I thought it was really weird when  a mom nursed their child until they were two.  Now mine is 2!!!  What am I doing?  I have an old friend back in Michigan.  We were best friends for most of our lives and have since drifted apart for many different reasons.  I can just imagine the words that would come from her mouth if she knew I had become “that” mom!!!

So, I am making a commitment to PJ from here on out.  I will let you learn to become more independent.  I will teach you to hold your own cup and use silverware when eating.  I will teach you to feed yourself.  I will put shoes on you and help you walk instead of carrying you.  I will hold my breath the first time you let go of my hand and celebrate your learning to walk on your own.  I will cuddle you at night but you don’t need to nurse anymore.  Let’s just cuddle and read stories now.  I will expect from you what I expected from your brothers at this age.  I know it might be harder for you but I will teach you what you need to know.  You deserve to have the mom that your older brothers had so I will stop being the “helicopter” mom.  I don’t even know how I got to there in the first place.  To myself, I promise to throw away all of my nursing bras which do terrible things to my shape.  I promise to allow myself to have a glass or two of wine at night without worrying about nursing in the morning.  I promise to teach PJ to be more self-sufficient so he won’t always need someone to do everything for me.  I promise this may be hard but will make my life and PJ’s easier in the long run.

PJ and I have to remember this quote:

I am not afraid of storms

For I am learning to HOW to SAIL my SHIP

-Louisa May Alcott

Little Women

driving

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Hey Look Everyone!!!  Alex isn’t the only one taking drivers ed this summer!!!

Gigi’s Playhouse/Milwaukee

Several months ago I saw one of my facebook friends had “liked” a page called “Gigi’s Playhouse.”  I looked at it and it was all about Down syndrome so I “liked” the page too.  Since then, I have seen several different posts from Gigi’s playhouse so one day I decided to really look into it.  What I learned blew me away.  Gigi’s Playhouse is a Down Syndrome Achievement Center.  Each playhouse offers playgroups and classes that are therapeutic in nature.  There are classes for every age group, all the way up to adulthood.  These centers are unique because you never age out it and they are completely free!  The more I read the more I wanted a playhouse here for PJ.  I talked to Dave and to Emily’s mom (Kathleen) and really prayed about it.  I remember telling God that if this was the direction He wanted me to take then to show me the path.  The night I said that prayer I went to a resource night in Cedarburg and met some really wonderful women who jumped right on board.  On June 3, Kathleen and I drove down to Chicago to see a Gigi’s Playhouse and meet with some people from their national headquarters.

It’s amazing to me how things are coming together.  It’s been six weeks.  Tonight we had our first official committee meeting.  The room was energized.  Everyone had awesome ideas and suggestions.  Kathleen and I have surrounded ourselves with people who really know how to get something of this magnitude done.  I can say that when I left tonight I knew in my heart that this would happen.  We still have tons to do.  We have to write a business plan, fundraise, and identify a location.  But tonight the work has begun!!!!

Check out the links so you can see what is coming to Milwaukee!!!

http://gigisplayhouse.org/

https://www.youtube.com/user/gigisplayhouse

Hubbard Lake – 2013

Here are a few pictures from the time spend at Hubbard Lake with my family!!!

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Tire Swim Fun!!!

Tire Swim Fun!!!

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Hot tub time!!

Hot tub time!!

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A Little Perspective

Earlier this month, we had the opportunity to spend a week in northern Michigan with my family.  My parents have a beautiful cottage up on Hubbard Lake and we go there every Fourth of July.  We got there on Saturday night excited for the upcoming week.  But we woke up Sunday morning to a very sad story.  The day before there was a dad who was out with his kids on the lake.  He was driving the boat while his kids were tubing.  There was also a gentleman riding around on a jet ski.  Now I have heard different accounts of the story and I don’t know who is to blame but the end result was the man on the jet ski hit one of the children.  She was 11.  Our neighbor’s daughter in law was the first on the scene and gave her CPR until the paramedics arrived.  She said she knew as she was working on the little girl that she was already gone.

It was hard throughout the week to not think about her.  We actually ended up not spending very much time on the water and when we did my kids were scanning the water for Jet skis.  On the day we left we were all hugging and tearing up because this wonderful week that we look forward to all year was ending.  But then we remembered that there was a family burying their daughter and crying real tears of grief.  A little perspective.

I was out yesterday thinking about how blessed I am.  I have a husband who still loves me after 16 years of marriage.  I have five awesome boys.  I have a house that I love and we live in a beautiful area filled with really great people.  As I start to think of all of my blessings I always come back to PJ.  I would never in a million years have imagined that a child with Down syndrome would be one of the greatest blessings God could have ever given me.  There is nothing that I wouldn’t do for him.  Because of PJ and my new connection with the Down syndrome community, I have made a lot of facebook friends who have children with Ds.  One of them is named Isaac and he is a year younger than PJ.  He was also born with anal-rectal malformation and needed emergency surgery to have a colostomy put it.  He went in on Monday for his colostomy reversal.  I remember being so scared for PJ during that surgery.  So much could go wrong.  But PJ came through with flying colors.  He has been colostomy free for over a year now.  Isaac’s surgery didn’t have the same outcome.  He came out of surgery and about a day later his tummy was bloated.  They realized he had a tear and so they had to take him back into more surgery.  After that surgery his blood pressure started to drop.  They were giving him BP medicine and his oxygen levels dropped.  So they had to intubate him.  He is now on a ventilator and is having seizures.  They gave him a 24 hour EEG and it showed that the core of his brain wasn’t getting enough oxygen.  They don’t know if he will ever wake up and what he will be like if he does.  The doctors are asking his mother if she would like to take him off the vent.  It’s every parent’s worst nightmare.  I find myself checking Facebook every 15 minutes to see if there are any  new updates.

Dave, along with many other people. always ask me why I follow sad stories.  There is enough sadness in this world without actually going looking for it.  I’m not sure I can answer that except to say that it brings perspective into my life.

Count your blessings.  Hug your children.  Forgive people who have wronged you.  Apologize to those who you have wronged.  Pray.  And then do it all over again!!!

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