Home Is Where The Heart Is

In this case, I am talking about Emilia's successfully repaired, strong, and brave heart that was allowed to go home from the hospital today.  We are so thrilled to have our little family back together under the same roof and to see our sweet girl recovering quickly from her surgery.  And I am sure the nurses and doctors on floors A6 Central and A6 West at our local children's hospital are relieved that they don't have to spend another night watching a little pixie walk the halls in the wee hours of the morning, shouting things like hi, bye, wagon, yellow, circle, chair, red, and go-go-go.

I plan to do a long post about our experience at the hospital, but for tonight I will just share a few photos from Thursday when the music therapist visited Emilia to aid her recovery.  The 45 minutes she spent with him completely made her day.  When he had to leave, I asked her to say thank you and she said, "Tink you" and blew him a spontaneous kiss.  That's how much she liked him and his guitar.

Craig and I also want to express our deep gratitude to all of you who supported us through this week with love, prayers, good thoughts and positive energy as well as hospital visits, emails, cards, balloons, toys, books, and sweet and salty treats.  I am probably not going to be able to get a thank you card out to everyone who blessed us in the last five days, but I do want all of you to know that this outpouring of kindness and goodwill meant so very much to our entire family.  From the bottom of our hearts, thank you.

IAC 270 Results

The following referrals were issued in IAC Session 270 which was held on January 15, 2014:

1) French dossier from October 2012 referred a waiting child (#2071) with a profile on the MOJ site

2) Luxembourg dossier from March 2013 referred a waiting child (#2268) with a profile on the MOJ site

3) US dossier from December 2013 referred a waiting child (#685) with a profile on the MOJ site

4) US dossier from December 2013 referred three waiting children (#2093 & #2094 & #2095) with profiles on the MOJ site

5) US dossier from December 2013 referred a waiting child (#2043) with a profile on the MOJ site

6) US dossier from December 2013 referred a waiting child (#1958) with a profile on the MOJ site

7) Italian dossier from January 2014 referred two waiting children (#2264 & #2265) with profiles on the MOJ site

8) US dossier from January 2014 referred a waiting child (#1852) with a profile on the MOJ site

9)  US dossier from January 2014 referred a waiting child (#635) with a profile on the MOJ site

10)  US dossier from January 2014 referred a waiting child (#2204) with a profile on the MOJ site

11)  US dossier from January 2014 referred a waiting child (#1881) with a profile on the MOJ site

12)  US dossier from January 2014 referred a waiting child (#2191) with a profile on the MOJ site

13)  US dossier from January 2014 referred a waiting child (#2077) with a profile on the MOJ site

Resting & Mending

Emilia was in surgery for over six hours today.  She is in cardiac ICU now.  She is sedated and not awake.  Her vitals look good and the surgery was successful.  Some of the tubes should come out tomorrow and she will wake up then.  Craig and I are with her right now.  I will be here all night.

Thank you all for the well-wishes, prayers, and good thoughts throughout the day.  We appreciate your kindness and caring more than we can say.

It's A Heart Thing

Today Emilia passed her pre-op exams for her open heart surgery on Monday.  We were at the hospital for about three and a half hours for blood work, x-rays, a physical, an EKG, as well as meetings with the surgeon and anesthesiologist.

Even though we have had months to prepare, it's still really hard for me to wrap my mind around the fact that my little girl will undergo a major surgery three days from now. I have had many sleepless nights and anxiety attacks thinking about it all.  I have questioned if we should pull the breaks as parents and hold off for another year to see if things with her heart might get better. But what if things would get worse as the cardiologists expect?

Aside from all the risks of the surgery itself, one of the hardest aspects for me to accept is the scar.  Our littlest nephew had open heart surgery two years ago, so I know what those scars look like early on and later.  For boys and men, scars are badges of honor, cause for tall tales, sources of pride. But for girls and women?  I think of our society's ideals for beauty, smooth, flawless skin among them, along with our bellies and chests as points of attraction for mates.  After this surgery, Emilia's body will not be par with that standard, no matter what.

by Carrie Lynne Photography

How will she feel about it?  How will she handle it?  Will she hide the scar or show it off as her cousin does?  How will it affect her search for a partner?  Will she meet someone who can find appeal and beauty in her scar?  Or someone who can look totally beyond it and recognize the survivor she is?  Maybe I am just projecting my own fears and perceptions about scars onto my child.  Maybe she will have no problem wearing her scar with confidence and telling people that it's a symbol of her own bravery and strength.  Only time will tell, but it weighs heavily on me that today I signed papers allowing the doctors to alter my daughter's body in a way that may not be completely positive for her life.

Please keep Emilia in your thoughts on Monday as she undergoes this major procedure.  If all goes according to plan, she will be in the OR from about noon to 4:00 pm and then lightly sedated in the ICU at least overnight before we can move to a regular room.  She will have many lines and machines hooked up to her for a few days, measuring vitals and pumping drugs into her system.  Her heart will be stopped for about an hour during the surgery.  We want her body, spirit, and mind to be sound when she wakes up on Tuesday, so please unite with us in this wish for our cherished daughter.

IAC 268 & 269 Results

The following referrals were issued in IAC Session 268 which was held on December 4, 2013:

1) Greek dossier from March 2007 referred a female child aged 8 years and 6 months

2) Greek dossier from April 2010 referred a female child aged 2 years and 3 months

3) Dutch dossier from May 2010 referred a brother and sister aged 5 years and 11 months & 4 years

4) Spanish dossier from May 2010 referred a male child aged 5 years and 8 months

5) Spanish dossier from November 2010 referred a male child aged 6 years and 11 months with a family history

6) German dossier from December 2010 referred a male child aged 1 year and 10 months with features in health status

7) Italian dossier from February 2012 referred a female child aged 2 years and 1 month with features in health status

8) US dossier from March 2012 referred a female child aged 2 years and 1 month with features in health status and a family history

9) US dossier from November 2013 referred a waiting child (#1668) with a profile on the MOJ site

10)  US dossier from December 2013 referred a waiting child (#2168) with a profile on the MOJ site

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The following referrals were issued in IAC Session 269 which was held on December 11, 2013:

1) Spanish dossier from May 2010 referred a male child aged 2 years and 7 months with features in health status

2) Spanish dossier from July 2010 referred a male child aged 3 years and 11 months with features in health status

3) Dutch dossier from August 2010 referred a female child aged 2 years and 5 months with features in health status

4) Italian dossier from February 2011 referred a female child aged 7 years and 4 month

5) Italian dossier from November 2011 referred a male child aged 7 years and 7 months

6) Italian dossier from March 2012 referred a female child aged 7 years and 2 months with a family history

7) Italian dossier from June 2012 referred a male child aged 7 years and 11 months

8) US dossier from July 2012 referred a sister and brother aged 6 years and 3 months & 5 years and 4 months with a family history and features in health status

9) US dossier from October 2012 referred two brothers and a sister aged 5 years and 5 months & 7 years and 9 months & 4 years and 1 month

10) US dossier from January 2013 referred a waiting child (#2194) with a profile on the MOJ site

11) Italian dossier from October 2013 referred a male child aged 9 years and 10 months with a family history

12) Italian dossier from December 2013 referred a waiting child (#2210) with a profile on the MOJ site

13) US dossier from December 2013 referred four waiting children (#1853 & #1854 &1869 & #1870) with profiles on the MOJ site

14) Canadian dossier from December 2013 referred a waiting child (#2088) with a profile on the MOJ site

15) US dossier from December 2013 referred a waiting child (#948) with a profile on the MOJ site

The Right Cloth

Many times in the last few years, people have told us that they admire us.  While we appreciate that sentiment and understand that it is meant as a big compliment, as a family we are looking for something other than admiration.

First and foremost, we want your empathy, tenderness, and tolerance for our children.  Please do not reject them because they are different.  Do not give up on them or ignore them when you are around them.  Do not retreat from them because they do not have volume control  or a gentle button (yet) or because they might be interested in something no other child you have met has liked or because they may not be able to reciprocate your interaction in that moment.  You could give us no greater gift and no greater joy than to accept, understand and love our children just the way they are.  When others reach out warmly to Rex and Emilia, it brings tears to my eyes every single time.  When others try to find ways to include our kids based on their ability, it fills me with immense gratitude.

by Carrie Lynne Photography

Secondly, as parents we need support, emotionally and socially.  Having developmentally disabled children is very isolating and our own road has become lonelier as the kids struggle forward.  Our schedule is filled with medical and therapy appointments and even when we are at home, we are usually trying to catch up with anything from laundry to medical claims.  It's impossible for us these days to sit for a long conversation or even a full meal, but that doesn't mean that we don't want to be with others.  We want to know what's going on in your life and be a part of it.  We want to have those good talks and real human connections.  Can you circle a playground with us while we chat?  Can you come over for a cup of tea while I unload my dishwasher?  Can you meet us at a therapy session, so we can catch up while the kids do their work?  Please do invite us to birthday parties and play dates and family gatherings.  We may not always be able to attend, but we will certainly make our best effort to come and then leave as still friends.

I recently read or heard a quote that, paraphrased, went something like this: "It's easy to love someone who loves you back, who says thank you, and who reciprocates your loving acts.  But when you are asked to love someone who cannot or will not respond in kind, it will truly show the cloth you are made of as a person."  In some ways what we wish for our children and family right now is to be surrounded by people of that special cloth who make the conscious choice to see our normal not as insanity, burden or struggle, but can appreciate the beauty, humor, tenacity, and blessings in our family and life.  If you are that person, you know where to find us.

Our most difficult task as a friend 

is to offer understanding 

when we don't understand. 

~ Robert Brault

95 Seconds

Rex does not like to color or scribble or do anything functional with a writing utensil in his hand.  So, his OT goal is just to get him to build up tolerance for this type of activity.  Today he brought home this completely wonderful picture from school:

And on the back is says:

Go Rex!