Wednesday, May 18, 2011

No Enemies and No Regrets: 3 Weeks Until Joey's Open Heart Surgery

Look at the big boy!  Our friends from Help Me Joe (that's our nickname for Help Me Grow) got Joey set up.

Glee Spoiler Alert

Last night's episode of Glee hit a raw nerve.  Thankfully, Lauren warned me about it before I watched it on the DVR tonight.  I am so grateful that Glee highlights a teenager (Becky, played by Lauren Potter) who has Down syndrome as well as an older women (Sue Sylvester's sister Jean, played by Robin Trocki).  To turn on the television and see not one, but two individuals who have Down syndrome have meaningful roles on such a major show means the world to me.  It is just one more way of educating and exposing the general public to individuals who have Down syndrome.  By the way-- it is best to say someone "has" Down syndrome instead of saying they suffer from it.  It goes back to the People First Language.  Down syndrome is not a disease.  You would never say someone "suffers" from having brown hair-- they just have brown hair.  Again-- this is information I never knew before we had Joey.  It's a huge learning curve and I'm just trying to help spread the word.  No judgment-- just trying to educate myself and others.  Okay-- I digress.

Until recent decades, people who have Down syndrome didn't have a very long life expectancy.  According to my "Babies with Down Syndrome: A New Parents' Guide"-- their life spans have increased dramatically due to the advancement of medical treatment. The book says that in 1929, the average lifespan of a person with Down syndrome was nine years.  Yes- you read that correctly-- nine years.  In 1985 the average life expectancy went up to 25 and today, in 2011, it hovers around age sixty.

The character Jean was so special to me because she showed a side of Down syndrome that we rarely see.  An older person who has it.  So often we see babies or toddlers or maybe even teenagers who have Down syndrome be highlighted, but to see someone like Jean who has lived a relatively long life was so inspiring.  I held Joey and fed him his bedtime bottle while we watched Sue grieve the loss of her sister.  She said in the eulogy of her sister, Jean, "She had no enemies, she lived with no regrets."  That's when the waterworks really started.  I hope for both of my boys that they will live such a life as to have no enemies and live with no regrets--this viewer will greatly miss and mourn the loss of Jean.

I think I also took Jean's death on Glee especially hard because of what the near future holds for Joey.  In just three weeks from today, on Wednesday, June 8th, he will undergo open heart surgery to repair his ASD/VSD and his leaky mitral valve.  Suddenly it seems as if we are living in a time warp and time is moving at a quick and rapid pace that I can't slow down no matter how hard I try.

Interestingly enough, the U.S. News Best Children's Hospitals came out for this year and the University of Michigan C.S. Mott Children's Hospital was ranked #3 in the nation for pediatric cardiology.  We have so very little control over what will happen when Joey has his open heart surgery and I'm immensely grateful that we are going to such an incredible institution for his care.

Friends and family ask, "Are you ready?"  I'm trying to be ready, but ultimately, I just don't know what to do with myself.  I try to hold and love up on Joey as much as possible.

We are Buckeyes....

I try to spend quality time with Tommy and get things organized for him while we are gone.

Most recently I've been trying to create a Packing List for me and Joey.  I've researched other blogs and the boards on

Here is what I've come up with so far-- if anyone has advice or words of wisdom-- Please Share!!

What to Pack for Open Heart Surgery

 Packing List for Joey
1.  Two of his blankets
2.  Photo Collage of him, Tommy, family for his crib
3.  His lamb lovey
4.  His bottles, nipples, thickener
5.  Baby legs for his little legs (I'm obsessed with these for his hospital visit- I bought 8 pairs)
6.  Some extra diaper wipes from home
7.  Books to read to him when I am not allowed to pick him up
8.  Larger sleepers/front button outfits
9.  Socks
10.  Joey’s health folders and insurance information
11.  Notebook and pen to take notes during rounds

Packing List for Me
1. Cell phones and chargers
2.  Laptop and charger.
3. Video and charger.
4. Camera and charger.
5. Toothbrush/toiletries.
6. Extra socks.
7. Tank tops and hoodies to layer
8.  Towel, pillow and blanket (recommended because the hospital towels are tiny)
9.  Magazines/book
10.  Healthy snacks:  oatmeal, almonds, tea bags, via coffee, apples, cheese
11.  Hand soap and lotion (recommended because the hospital variety is harsh)
Candy/treats for the nurses and doctors
13.  Thank you notes
14.  Vitamins
15.  Lip Balm
16.  Lululemon reusable water bottle
17.  Reusable/insulated coffee mug
18. Disposable face cloths
19.  Comfy slip on shoes
20.  Cozy pants to slip on to sleep in while staying in Joey’s room

That's all I've got so far, but the list grows every day.... I'm not exactly known for being a "light" packer.  

In the meantime, life goes on and in the process of waiting for Joey's open heart surgery-- he's been growing up on me!  How dare he!  This little guy just gets bigger and bigger.  He's now doing solids for breakfast, lunch and dinner.  And...drumroll.....he got his first tooth!!!

Mom--here is the picture you asked for!!!
He's growing, changing-- even rolling!

First time trying puffies.

Ooohh, baby boy's eyes look so green in this shirt!

Thank you, LoLo!

Yes-- those are the support tubes that fit into Joey's high chair. Tommy was holding them hostage tonight.

So, time marches on and we march on trying to enjoy each and every single day--trying to live without any enemies or regrets.  Wouldn't the world be such a better place if all mankind could adopt that motto?  It's not always possible, but it is at least worth trying especially because life is so precious.


  1. Jenny

    I will be praying for Joey and your family. I so believe in the power of prayer and truly hope you feel surrounded by God's love during this challenging time.

    Molly (Salyers) Mudra

  2. The boys are growing so quickly! Don't forget to pack some shower shoes for yourself if you plan on showering in the Hospital.

  3. Keeping Joey, you and your family in my prayers Jen. The new pics are darling! I can't get over his hair! And congrats on the new tooth! : )



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