Wednesday, November 4, 2015


A lot of insanely great things have been happening lately, but a lot of not so great things have been happening as well.

We held our first fundraiser for The Down Syndrome Diary last Friday, and it was a complete success!  The Halloween Party had an amazing turnout of generous people who came out to have a great time and support my project.  I was so humbled at the turnout and I can't thank everyone enough!

There was a bit of a dark cloud leading up to that day with my career though.  The company I work for unexpectedly let go of thousands of workers last week, and my position was eliminated.  I was lucky enough to be one of the few to be reallocated to another team, but so many of my co-workers were not.  I have been working there for 16 years, since I was 19 years old, so this was quite an emotional few days.  While I understand the direction the business is going in, and even agree with it, I am still reeling from emotions of having people I've known for over a decade lose their jobs.  For me, and for my family, losing my job would while pregnant would be a game changer.  I am the main breadwinner, and everything would have to change. 

Standing on the precipice of change is always scary, but I usually roll with changes pretty well.  I've spent this entire week trying to figure out who I am working for now and what it is that I'll be doing.  As the pieces slowly started to coming together, the puzzle was blew apart again at Benny's specialist appointment. 

At 18 months, Benny's weight began dropping pretty dramatically.  His poo was always mushy, sticky, and overly stinky, so we had suspected Celiac's disease (common with Down syndrome) or thyroid issues.  We tested his thyroid multiple times, and everything seemed to be ok there.  We were attempting to find an allergist to test for Gluten Intolerance, but I couldn't find one that would see a baby that young.  Meanwhile, Benny's weight began to go back up, his diaper situation began to normalize,  and we seemed to be past whatever the problem was.  I stopped worrying, about that anyhow. 

Then, at his two year specialist appointment, Benny's doctor freaked.  In the last month Ben has begun to lose weight again, and has broken out with a horrible case of Keratosis Pilaris.  I hadn't been too worried about his weight/height.  He's small, but his normal pediatrician liked his progress.  The specialist, however, said we are officially in a state of "failure to thrive". 

That was last night, so today we had to get emergency bloodwork done.  I had to email my new boss whom I've never spoken to before, who has never even heard my name before, and tell him I had to skip out of work to take my kid in for emergency bloodwork.  Now, this might not seem like a big deal to most of you, but I have been in the corporate world for a long time.  There are people that get it, that understand, and there are people that DO NOT.  Working mothers get judged pretty hard in the workplace, and a mother of a child with special needs is at the top of the judgement list for a lot of folks.  Little do these people know, we are the bad asses.  We get shit done. We are often the hardest damn working people IN the business, but the stigma is there nonetheless. 

Based on the response I got later that day, it looks like my new boss is not one of those people.  Thank God almighty, I think he's one of the good ones that just gets it.  I can't tell you the relief I felt based on his response today.  Hallelujah!  I didn't have this relief yet though as I headed to the hospital.

Walking into the hospital, I went to the welcome desk to find out where I needed to go to get the insane amount of blood drawn for Benny.  As the new girl at the desk was trying to figure it out, Ben projectile vomited ALL OVER HER DESK.  I mean...there was a LOT of puke.  It was everywhere.  EVERYWHERE!  Emotional as I was already, I began to cry as I tried to clean up the puke.  The girl at the desk, who was about 12 I think, looked shocked and just sat with her mouth open.  Luckily, another lady immediately came over to help.  She was so sweet. She made me stop cleaning, and sweetly told me to just worry about my boy and she would take care of everything else.  Once Ben was cleaned up, she escorted me to the lab.  I was literally sobbing.  I looked like a complete mess, and the 12 year old girl at the front counter was still sitting in shock.  I don't know if it was the puke or the Lake Superior level tears streaming down my face, but we got her good!

Once we got to the lab, Benny was charming and smiling at everyone as normal just like nothing happened.  We then proceeded to have what would probably be the best attempt at drawing his blood I've ever experienced.  As I held him, the two ladies helping us made animal noises right along with me as I sang Old McDonald to keep Benny's mind off of the needle.  He didn't make a sound!  He smiled through the entire process!  These ladies were amazing, and I cannot thank them enough.  However, the vein she got was tapped out and she didn't even get half what she needed. 

We took a break at that point, had some juice, and then Ben proceeded to projectile vomit all over the room we were in.  We cleaned up the puke again, and started to set up for arm #2!  The same two ladies came in, but unfortunately his other arm didn't have a viable vein.  They needed to go into the same arm again, different vein, to finish it off.  This did not go as well.

The ladies had to call their 3rd associate in for help, as Ben was not calm this time.  He was wiggling, and squirming, and fighting as much as he could.  These three sweet ladies, who were amazing at their jobs, were working in sync to try and get this blood out of him as quickly and painlessly as possible while talking sweetly to my Ben the whole time.

As they were doing this, there was this lady in the lobby.  As the four of us were wrangling my poor two year old, whose arm was probably already sore from the first blood draw, she began throwing a fit.  She began yelling and complaining about what they were all doing in the room with us, and why wasn't she being helped, and she didn't have time for this, and were they taking a break, etc etc etc etc.  The main nurse helping us kept calling out to her explaining they were helping to a toddler with a disability at the moment, and she would have to be patient.  I about lost my mind!  Talk about a Mama bear making an appearance!!  I yelled something not so nice out to her as well, at which point the three lab ladies all smiled approvingly.  The whole process was awful, and that lady had made it a million times worse.

Once we were done, I sat in the room holding Benny and calming both he and I down before we ventured out.  Once we left the room, we had the unfortunate timing of leaving at the same time as the lady whom we had inconvenienced horribly.  In the hallway, she had the gall to speak to me (as I am still quietly sobbing mind you).  "I am sorry, but those people in there were paying no attention to me and I needed to get back to work!  They are always so inconsiderate!"  Then, this is the moment, that I literally thought about handing Ben to a nearby nurse and literally kicking this lady's ass.  She put her hand on Ben and said, "And it seems like you were being a stinker and holding everybody up!"


Everything from the last few weeks seemed to boil out of me at that moment, and I cannot believe I held it together as much as I did.  I turned to her, "He had SIX VIALS of blood drawn from him in there!  SIX! SIXXXXX!!!!!  He did great, despite your yelling.  SIX!  I am so sorry we inconvenienced YOU!"

I turned and walked sharply away from her at that moment before I did or said more than I would be able to take back.  I got Ben to my car as quickly as possible, and I cried.  I cried HARD for way too long before I composed myself enough to drive home. 

Six months pregnant, ridiculous changes, and lots of unknown hanging over me, I suddenly felt better.  LOL!  I swear, sometimes, you kind of need to hit that breaking point before you start to feel better!

For the first time in weeks tonight I feel a bit calmer.  I am anxious of Benny's bloodwork, I am anxious about my new job, but I feel the slightest bit better.  I know that we always come out the end of "bad" situations for the better down the road, but it's just a little difficult to see at times through the tears.

Thank You so much to the wonderful lab ladies today at Beaumont Dearborn that made a horrible situation as painless as possible for me and my Benny.  I can't thank you enough.

To the lady whose time was so important that you made a horrible situation for a two year old with Down syndrome and his pregnant Mama even worse, Bless YOUR Heart in the most Southern way possible!


  1. Jamie, Good on you ! I actually think you handled "miss self centered" quite well! As for Benny, He is such a trooper! And his smile just lights up the screen! Thank You for keeping us all posted on the latest on Bennys health, his activities, and accomplishments!

  2. Hi There! I just came across your blog and loved reading this. I haven't read any further to see if you received test results or not, but I just went through a very similar situation with my 16 month old who has down syndrome. His symptoms were a bit different but he was put through multiple tests, blood, cat, neurology and they could not figure out what was wrong. It was a nightmare. Long story short, turns out he has a severe dairy allergy and we have removed wheat as well. When we removed these he was immediately back to "normal" or healed. Just in case you're still unsure, thought I would share. I can't wait to read more of your blog!


Would love to hear your thought, comments, advice, or emotional outbursts!

-xoxo Jamie