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!

A Little About My Life In Someone Else's Words

'I am strong. Do I have a choice?' Moms of special needs kids are #DoingItAll, too

Kavita Varma-WhiteTODAY contributor

For moms with special needs kids, the task of “doing it all” is an even more daunting one.

In addition to the normal stresses of parenting, they bear the emotional and often financial strain of being an advocate for a child who needs more. And many of the hundreds of women who wrote to Maria Shriver and TODAY say it’s the most exhausting challenge of all. 

This week, Shriver and TODAY are highlighting women's stories and their financial struggles in a series called #DoingItAll, culminating in a "help-a-thon" on TODAY Wednesday; in the meantime, TODAY Moms is asking moms to help each other with some of the most common challenges women face as they try to take care of everyone and everything in their lives.

Cindy Findling’s husband died, leaving her and her two children, one of whom has autism. Findling says that like others in her position, she struggles to find enough time and get enough help.

“Getting enough support in school or out for the daughter with autism, providing them both with the support they need to grieve the death of their father, and juggling the financial and logistical realities of running a business…People tell me all the time that I am strong. Do I have a choice? I don’t think so,” Findling writes.

For Jennifer Gratzer, mom of 3-year-old Mateo, who has many disabilities, it took some time before she accepted that “I am not a sleep deprived, brain-dead, exhausted woman because I am a slacker…it is because I am CEO of Team Mateo, and our team grows daily.”

From her family’s experience, Gratzer has identified several areas where all parents of special needs kids could use help. They include the need for more daycare providers, babysitters and caregivers who can take care of special needs kids so their parents can take care of themselves. Writes Gratzer, “I would truly love to be able to have a massage or a doctor’s appointment without having my son in the room. I have a wonderful sister who helps out, but I try not to call too much for fear of burning her out.”

Gratzer says she would love some kind of centralized information source, “so we can get and give advice, recommendations and warnings without spending too much time searching the Internet.”

Finally, Gratzer says families with special needs kids need the acceptance of strangers. “I work every day to make my life and my son accessible to others. I see that pause and that question in people’s eyes. I know it’s curiosity and discomfort at not knowing how to interact, so I usually open the conversation for them.”

Psychiatrist and TODAY contributor Dr. Janet Taylor says parents with special needs kids are themselves a special group. “We don’t acknowledge the extra burden and energy required for a child with special needs, the extra energy into medical worries,” said Taylor. “When you are in that position, you do truly feel like you are the only one who can take care of them.”

Taylor says it’s natural for parents to have frustrations, but that’s a sign that you need extra help. And there is help out there, whether it’s other parents who have navigated similar waters before, or school counselors or healthcare providers.

She adds that parents of special needs kids must acknowledge that their own emotional health is key to survival, so they shouldn't discount seeking therapy.

We asked TODAY Moms on Facebook to share the advice they have for the challenges that come with raising special needs kids.

Many responded that support groups – whether found in other families who share the same situation, schools or online communities – are a life-saver for beating isolation.

Stephanie Campbell Headley’s 12-year-old twins Zoie and Bailey have Angelman Syndrome, a genetic disorder marked by developmental delays and speech problems. “My life is made easier by networking with other Angelman parents through social media and through relationships within my family and my church,” she writes. “There is so much love and positivity out there. You just have to know where to look!”

Kara Clarke Matunas suggests that doggedness and determination go a long way. Mutanas seeks advice from other parents, pediatricians, specialists and parenting groups.

“When your child has special needs, not only are you their mother, you are also their physical, developmental, occupational and speech therapist. You are their advocate at meetings for education and you are their legal backbone if you do not feel they are getting it all,” she writes. “Some days can be a challenge but it is the most rewarding life. I'm so proud of my little girl every day.”

“Research, research, research the diagnosis, treatment, the therapies, and the services available,” advises January Gibbens. “Listen to your instincts about what your child needs and be involved.

And for Katie Sallee, a single mom of a child who has ADHD, parenting has become a never-ending search for answers.

“When you are put in a situation you know nothing about, your love for your child prompts you to learn EVERYTHING about their condition,” she writes. “I know that I don't successfully 'do it all' but I just keep moving, learning, persevering, because, really, I don't have a choice."

Emilia Sings

This morning all of a sudden, Emilia started singing.  She hadn't been much of a singer up until this point, I think, because she cannot say the words, but she has always loved it when we've sung to her.

Today Emilia finally seems to have found a way to sing on her own.  We've been hearing versions of it all day with various songs from Twinkle, Twinkle Little Star to Bingo to Old McDonald to Ring Around The Rosie.  Sometimes she even uses the real lyrics mixed in with her more random melodic syllables.  And, she tells us what she's doing by announcing, "Singing."

This is so exciting and wonderful.  I am thrilled that Craig was home with us to witness this small miracle.  Sing away, sweet Emilia, sing away.

Four Plus Four Makes Eight

Please consider helping our friends, the Nicely Family, about to double in size through the adoption of a sibling group from Poland:

http://giveonesaveone.blogspot.com

Thank you.

Thursday Dinner Epic Fail

This afternoon I peeled and trimmed and washed and cut up a bunch of root vegetables to roast for dinner.  I salted and seasoned and drizzled expensive garlic infused olive oil over everything.  Yes, I'll admit it, my mouth was watering, I had been dreaming of those roasted veggies all day long.

Then I put the Pyrex dish with the vegetables into the oven at 450 degrees and set the timer for 25 minutes to stir.  About seven minutes into the roasting process, I heard a loud bang from the kitchen.  When I went to check, this is what I found:

My Pyrex dish had exploded into a hundred pieces and the veggies were strewn all over the oven.

I was glad that no one was hurt and nothing irreplaceable broken, but the clean-up of this mess was a pain.  Plus, I was so disappointed about not getting these veggies for dinner.  Thanks to the hubz, I was able to drown my culinary sorrows in a mountain of carry-out pad thai.  We'll leave the roasting of vegetables for another day.

Armenian Christmas 2014

January 5 is Christmas Eve in Armenia, January 6 Christmas Day.

To celebrate, we had Armenian food today.  I looked online for a coffee cake recipe for brunch and found something called Armenian Nutmeg Cake.  Now, some sites claim that there's no such thing and others insist that they have found this recipe in regional cookbooks.  I decided to just go with it and bake this cake for our family because it was easily converted to being GFDF and seemed like something all of us would enjoy.  Upon tasting it, we all concurred that it was delicious.

For dinner we had Nevik (or Neeveeg) which is a stew made of swiss chard and chickpeas and often served on Christmas Eve.  Three of us quite liked it, but it didn't come as a surprise that our little Armenian wouldn't touch it.  He opted for a hummus sandwich instead.  I guess that's still pretty Armenian.

Tomorrow is a school day for Rex, so he is going to bring a little Christmas gift for his classmates.  I made coloring pages showing the Armenian eternity symbol which has been found in Armenian architecture since the 5th century.  Each child gets three crayons (red, blue, and orange) to represent the Armenian flag, and a small box of organic raisins, honoring Armenia's famous fresh and dried fruit.

In the years to come when our children are older and will be able to absorb more of their birth cultures, we hope to add further Armenian and Bulgarian Christmas traditions to our holiday celebrations.

Merry Christmas to all of our friends in Yerevan and to the children and staff at Rex's former orphanage.  We miss you and think of you often.

Tipping The Scales #2

Today, the scales tip for Emilia.  She has now been with us longer than she was at the orphanage in Dobrich.  Her transformation  from traumatized near-baby to spunky preschooler has been miraculous.

We are so thankful for the time we've already had with our wonderful daughter and look forward to a shared future of great promise and happiness.  We love you, precious girl.

December 2013

It was a busy month of December, so there was no time to blog about all the fun stuff we did.  Here's a short recap in pictures.

On December 6, St. Nick brought the kids each a set of wireless headphones.  One is now connected to an old Blackberry, the other to the Kindle, so both kids can listen and/or watch what they like simultaneously without fighting over the equipment.  No strings attached, literally.

The Christmas party at our local children's hospital is quickly becoming a tradition for us.  This was our third year there.  Rex and Emilia so enjoy the live band and the band is incredibly kind to them.  They have remembered them from year to year and treat them with great patience and understanding.

Our traditional Christmas treat: homemade cinnamon rolls... before the icing went on.  There were 36, 18 regular and 18 GFDF.  As you can see, the kids could not wait for them to cool a little, but dug into the first pan right away.

Rex and Emilia with the new spinning tops they got from our Ms. Rie.

We spent Christmas Day with our friends in Northern Ohio.

A few days after Christmas we loaded up the hip minivan with extended family and went to the Festival of Lights at the zoo.

Without knowing it, the kids gave us some beautiful gifts this Christmas.  Emilia spent the holiday week talking more than ever before, even around people she rarely sees.  She made us so proud with a few short and spontaneous sentences like "Up ball [I want up on the ball to bounce]"; "Top it? [Should I stop what I am doing?]" and at Target, "Circle red [I see a red circle]."

Rex, during a car ride where I had hopped into the back to sit between the kids, took my hand, laced his fingers with mine, leaned is head on my shoulder, and just sat peacefully by my side.  If that's not the gift of pure love, I don't know what would be.

We rang 2014 in quietly, but it's going to get a bit crazy soon as Emilia is scheduled for her heart surgery at the end of the month.  I will write about it more when the time gets closer.  For now, I wish everyone who visits our little blog a wonderful 2014 with many great adventures, countless happy times, and lots of love.