Buddy Walk Update!

We are 1 week away and just 7 chromosomes ($70) from our fundraising goal!!   Just $10 per chromosome...do you want to help us meet our $470 goal??   Click on the link below  to sponsor a chromosome and check back for our Buddy Walk photos on October 5th.  :)

This is our first year to join the Down Syndrome Community of Puget Sound's 2014 Buddy Walk and I'm SUPER excited about it!  The Buddy Walk is a nation wide event used to celebrate those rocking an extra chromosome and to raise funds to support resources in their communities. Strangely enough, the Seattle area is scarce in it's resources for children & adults with Down syndrome (super sad!)...but we can help change that!  Our personal goals are threefold:

1. Welcome our non-chromosomaly enhanced friends into this amazing world of Down syndrome. If you are local & would like to walk with Isaac's Team 2014 (a little jaunt around the Seattle Center) please join us!  This is a GREAT way to immerse yourself into a field of love and joy and grace. The Buddy Walk is also a perfect way to introduce your young ones to God's heart for us all...we are not to look on the outside, but to the heart that cries out to Lord. We are ALL the same that way, no matter what our bodies & minds may be doing. 
2. Raise $470...$10 for everyone of my boy's amazing chromosomes. Each one perfectly created by our Heavenly Father. The amount may seem small, but it is meaningful and attainable. I do hope we exceed that goal!  You can donate through our Buddy Walk page HERE. 
3. Have fun! We are going to wear our Down syndrome shirts and dance to great music, eat lots of Pirate's Booty, give LOTS of hugs, and celebrate the beauty of Trisomy 21...because God does! 

If you would like to join us for the Seattle Buddy Walk on Sunday October 5th, please let us know.  If you would like to help us meet our $470 goal, you can do that too! (click the link above). No mater what, I would encourage you to consider who is in your social/work/church circle with Down syndrome or other special needs...how can you celebrate & support them to be as successful as they can be?  What about a child with Down syndrome that needs a forever home?? *hint hint*

Big Afternoon at the Fair

     This is our third year to visit the Washington State Fair. That surprises me actually. Growing up, the few times we went to a fair-type event, I thought it was dumb. For some crazy reason (probably to keep us away from the expensive rides & toys), my parents drug my brothers & I to see all the farm animals. That's great & all but we lived in Wisconsin. I had seen my fair share (no pun intended) of farm animals. The whole event seemed a little pointless. But seeing how the Fair is just 5 miles from our house, I figured we'd give it a try.
      Isaac had only been home for a few weeks the first year we went. He slept soundly in the exo-womb while I walked through the grounds with our friends. Last year, we got a kick out of the gondola ride and the cows. Even tried our first fair food. Still trying to keep my expectations low, we went again this year...and had a blast!  Truly. I totally get the farm animal thing now...did you know there were so many different varieties of goats?? I kid you not, we saw a BABY pygmy goat...cutest thing ever.  Isaac LOVED the rides and my heart beamed to see him so happy. Methinks the Fair is going to be an annual event for this family. 

He's in charge of the Fair Guide.

Checking out the Scottish cows

Driving!

Flying!

Hauling freight!

Sailing!

     My all time favorite 14 seconds (twice) of our afternoon was riding the Giant Slide together. He laughed so hard the first time we went down, the ride-dude (carny?) let us go again right away...with the camera in hand. Isaac declares "GO!" at the end...clearly ready for another turn. :)

A solid end to a good day.

Mothering Together

(This is part of our story shared over at No Hands But Ours!)

When I learned my boy was in foster care, I found myself praying for the woman who was caring for my child. She was doing her job and I appreciated her. When I heard that she co-slept with my boy keeping him safe by her side at night and that Isaac's favorite activity was listening to music...music she turned on for him...my prayers became intentional. She was mothering my son when I could not. She was holding him and caring for him and making sure he stayed healthy. She was MY hands from an ocean away. My heart suddenly turned towards her. What was this process going to be like for her? Her job (and what I would find out later is her ministry) is to nurture this tiny boy until his "real" & blue-eyed mother arrived with paperwork and passports and money..and then give him away. Her heart must break at the thought!

I pleaded with my agency to let me met this woman. They could promise nothing and gently asked me to have realistic expectations. Once in country, I begged our national social worker. She was kind but again noted in that province meeting the foster family was not permitted. I even asked our Beijing tour guide, "Is there any possible way?"  He looked at me like I was delusional; "No. Your child was taken away from his foster family two weeks ago and taken back to the orphanage. No foster family for you". I was crushed. The joy of knowing I was getting my child was indescribable, but his foster mother...will she ever know how much I owe her?

Miracle of miracles, we met that day. She was gentle and kind. She doted on our son and told me everything she knew about him from the last 15 months; she gave me photos she had taken and showed me how to feed him. She carefully passed the mantel of The Motherhood of Isaac to me while our boy banged on the glass coffee table in front of us. Through the tears she let me kiss her forehead and then she walked away. I never got her name.

Fast forward nearly two years, an intense Internet search and a lot of prayer...a letter arrived in the mail. A family is Pennsylvania found online knew of a Chinese pastor in Isaac's province. With only her photo, they would help find her.  And they did!

"...I have been worried about Isaac. I miss him very much! 

Thank you for taking care of him...I thank God!..."

As our son sang wildly in his car seat, I stood in the driveway with her letter crying. In her own hand she had written us. She had a name. She loved our boy. She loved our God. My heart could not have smiled any wider. God's redemptive plan from the that pivotal moment in the Garden of Eden included she & I to mother together. To step into the shoes of his birth mother & provide hope for her child. To whisper our Heavenly Father's love to him while he slept. To worship together across an ocean and to offer our hearts in faith that God's plan is so very much bigger than us. I love this woman more now than I have words for. And how many more like her are there?? Brothers & sisters in China nurturing the forgotten children of their neighbors? In our distance and shared faith, Apostle Paul's words have new life for me: "I give thanks to God ALWAYS for you, making mention of you in my prayers, remembering without ceasing your work of faith, labor of love, and patience of hope in our Lord Jesus Christ in the sight of OUR God and Father" (1 Thes 1:2-3).

To our Chinese brothers & sisters in Christ who are fulfilling God's calling to care for the orphan...we love you!  You are loving on our children and we cannot wait to be a completed family with you in Heaven!

2014 Buddy Walk!

This is our first year to join the Down Syndrome Community of Puget Sound's 2014 Buddy Walk and I'm SUPER excited about it!  The Buddy Walk is a nation wide event used to celebrate those rocking an extra chromosome and to raise funds to support resources in their communities. Strangely enough, the Seattle area is scarce in it's resources for children & adults with Down syndrome (super sad!)...but we can help change that!  Our personal goals are threefold:

1. Welcome our non-chromosomaly enhanced friends into this amazing world of Down syndrome. If you are local & would like to walk with Isaac's Team 2014 (a little jaunt around the Seattle Center) please join us!  This is a GREAT way to immerse yourself into a field of love and joy and grace. The Buddy Walk is also a perfect way to introduce your young ones to God's heart for us all...we are not to look on the outside, but to the heart that cries out to Lord. We are ALL the same that way, no matter what our bodies & minds may be doing. 
2. Raise $470...$10 for everyone of my boy's amazing chromosomes. Each one perfectly created by our Heavenly Father. The amount may seem small, but it is meaningful and attainable. I do hope we exceed that goal!  You can donate through our Buddy Walk page HERE. 
3. Have fun! We are going to wear our Down syndrome shirts and dance to great music, eat lots of Pirate's Booty, give LOTS of hugs, and celebrate the beauty of Trisomy 21...because God does! 

If you would like to join us for the Seattle Buddy Walk on Sunday October 5th, please let us know.  If you would like to help us meet our $470 goal, you can do that too! (click the link above). No mater what, I would encourage you to consider who is in your social/work/church circle with Down syndrome or other special needs...how can you celebrate & support them to be as successful as they can be?  What about a child with Down syndrome that needs a forever home?? *hint hint*

Thanks for your support!  We'll keep you posted on our progress!

Medical Update

After a rough first 18 months together medically, Isaac has been wonderfully healthy for nearly a year!  Those tubes in his ears are stinking awesome!!  (You can read about our travels through the Valley of Chronic Ear Infections HERE). Seriously, we haven't seen our regular pediatrician since last November. I should probably call his office...

I've struggled with how much to share about my boy's medical status & our seemingly frequent trips to various procedures & specialists. The calendar can certainly look scary booked with therapists & consultations. And if you spend too much time on Google, you'll read that children with Down syndrome have 20% chance of having this problem or 10-15% at risk for that horrible disease. It can seem terrifying, but I guess that is exactly why I've chosen to share our story...the care of a child with Down syndrome does not have to be overwhelming. There are some extra tests & precautions, things our medical teams wants to be mindful of, but it's all good. Those screenings are put there to catch things early so nothing becomes an issue. I'm grateful to live in a country that provides access to excellent health care. Setting the national conversation regarding today's health care aside, America HAS health care access for everyone; we are so very blessed for this. Millions of people in the world die every day due to a lack of simple medical care. I don't even know how to extrapolate that number to the thousands (?) of children with Down syndrome globally that die daily because of anemia, or thyroid disease or obstructive apnea. All simple issues that my sweet boy is getting screened for now. I think of that when we are off to yet another medical appointment, then it doesn't seem so bad. And besides, our Heavenly Father is a Physician too. ;)

Filling out his own medical report.
Note the stethoscope around his neck!

Checking his own vitals
(Doing our work should lead to lower copays!)

Since Isaac has been doing so well, we've been able to get caught up on all the normal screening and testing needed for children with Down syndrome. We already get blood work every six months (anemia & thyroid checks) and are scheduled with the ophthalmologist & cardiologist at the same time. At our last visit to them both the ophthalmologist pushed our next visit out one year and are cardiologist said not to come back for THREE years That makes me wildly happy!   And like any other kid, we get to go to the dentist every six months as well (I need to call them too...), which Isaac does surprisingly well with.   Recently, we got an updated sedated hearing test which confirmed that Isaac does indeed have some hearing loss in one ear. This is consistent with mild dysplasia we found in the structures of his inner ear during a CT scan in the spring. This anomaly is common in those rocking an extra chromosome, but it also means he'll never need ear plugs at a loud concert. Lucky kid.   

Momma & son blood draw date
Everyone passed the anemia test!

He also just had an overnight sleep study to check for any apnea, which can be common with short little airways. This was quite the adventure. We drove 45 min North to check into a pediatric outpatient center where we got to spend the night under surveillance (yeah for me). Isaac also had to tolerate more than 20 electrical leads glued to his body. I was convinced this was going to be a nightmare experience (no pun intended) and brought every bribing tool I could think of...none of which were needed. ISAAC. DID. AWESOME. Only one episode of Elmo was watched and he didn't make one complaint though the whole event. I was freaking impressed with my kid!

Head leads going on.
Totally absorbed with Elmo

No-touching gauze going on.
Still absorbed with Elmo

Ready to konk out in the funny hotel

6am wake up call
Took three baths to get all the goop out of his hair!

 His sleep was a bit restless, understandably so with all those wires, but the technician got the information he needed so I am thankful. We celebrated with a 7am breakfast at Denny's and a low-key day so Momma could recover from her only 45 minutes of sleep (seems I don't like being videoed while sleeping, imagine that). We'll get the results in a few weeks, but fully expect that tonsils will come out in October then we'll have another healthy fall & winter. Thank you Lord!

For those praying about welcoming a child with Down syndrome into your heart and might be feeling a bit nervous about possible medical issues...you have nothing to be fearful of. Get a good calendar and a great pediatrician, then walk in the faith the Lord provides to you. He created your child PERFECTLY and will cover you through ANY issue that may come up...medically, developmentally, physically, spiritually...the same as any other child. I promise.