Sunday, February 26, 2017

A Family Update

A couple weeks ago we enjoyed some family time together while on a school break due to Chinese New Year.  It's such a festive and fun time of year, and the break also gave me some time to look back on the past couple years.  I reread old blog posts and was able to remember and reflect on God's goodness to our family.  "Come and see what God has done, how awesome his works in man's behalf!"-Psalm 66:5

Way back in April 2014, I wrote a post that expressed my disappointment in not being able to foster a little girl named Qun.  I shared how I had learned that God asks us to love and to love big.  It still amazes me that the little girl I wrote about is now my daughter, and it's a testament to who our God is.  I had no idea five years ago when we moved to Hong Kong that Maddie would become a part of our family, but I'm immensely grateful and thankful that God's purposes and plans are always so much bigger and better than I think they could ever be.  It makes me really emotional just thinking about it.

Maddie back in 2014 when we hoped to foster her
Maddie this February holding up a CNY red packet

Back in that same month over two years ago we shared the difficult story of watching our friends' daughter and her family walk through an incredibly hard season in their lives.  Bijou got very, very sick and we feared that we would lose our dear little friend.  I still remember sitting outside Bijou's ward just pleading to Jesus that He would save her life.  And I shed so many tears with her mom Cara.  But we also saw God work in Bijou's life in the way that he brought her to Cincinnati safely, showered her family with support in their new community, truly healed her little body, and took care of the finances to provide for her care.  We have been witnesses to a little girl's body restored, and this past summer while we were in the States we got to see the Legers again.  I can't tell you how joyful it is to see Bijou run, jump, laugh, and LIVE like she does.  She has the same BIG heart to love and we just revel in the times we get to spend with their family when we visit the States.

Cara has shared that Bijou's doctors at Cincinnati Children's Hospital are wonderful, and her disease and symptoms are able to be maintained through just one powerful drug.  She had a lung function test recently and did great and her bloodwork has been perfect.  She only has to see the lung and heart doctor once a year because she's doing so well, and meets with her rhuematologist every four months for checkups and an eye doctor due to cataracts from the steroids.  She has had a bit of swelling in some of her joints lately, so in December she received steroid injections to bring the swelling down.  Fortunately, the swelling hasn't caused her any pain and hasn't slowed her down one bit!  She truly is a living miracle and we praise our Abba Father that she is doing so very well.  You can continue to pray that Bijou would keep thriving and for her disease to continue being maintained well.

Bijou in April 2014, not too long before they left for the US
With the Legers this summer in the US :), Bijou is 2nd from the left

One of the other posts I reread went further back to August 2013 when we had just moved into the middle floor of a three story apartment in a village.  The nature lover in me loved our neighborhood of three story apartments and didn't ever imagine our family living in the high rise apartments that Hong Kong is so typically known for.  But this past June, we moved into a high rise apartment (mind you, we're on the 1st floor) :) and we are so very thankful to be here.  As much as we loved living in the village, the uphill walk home pushing a stroller with an increasingly heavy three year old with limited mobility along with groceries and two other tired kiddos was getting to be a challenge.  We loved our apartment but fighting the stairs to help Maddie get to the front door was making me sad.  For someone that isn't able to bend their knees fully, Maddie either had to be carried or needed a strong adult hand to help her get up each step.  It seemed like moving was an option we needed to pursue.  However, when we looked around at high rises in our area that had elevators and an easier commute, they were double the cost of our rent and way out of price range.

So when a rare opportunity arose to move to an apartment with an elevator, close to school and the hospital, and at a rental price we could afford, it turned out to be such a big blessing to our family.  Our new home has been even better than what we could have ever hoped for and in addition to checking off those boxes to meet Maddie's physical needs, it's almost double the size of our old apartment, making it gigantic for us!  At 1300 square feet, it's the biggest home we've ever lived in since we got married.  And I especially felt grateful this past October when Maddie had surgery again and the hospital was only one train stop away.  The proximity made going back and forth to the hospital and trading turns with Shannon a lot easier.  We feel spoiled to live here and it's been so fun to be able host larger groups of people and visitors too.  We look forward to seeing how else God will use this home to bless others in the future as well.
Having a CNY celebration at our place with some church people last month
Making dumplings too!

This fall Josiah started 2nd grade, Ava started 1st grade, and Maddie started preschool.  Josiah has become a voracious reader and continues to have a sweet, tender heart (most of the time).  He's also picked up bit of sarcastic humor from his father and loves to tell and figure out jokes and riddles.  He likes to play soccer and baseball with dad, and still loves to build with legos.

Ava can be seen most days in our home upside down on our couch doing a headstand, and she loves showing off gymnastic tricks she's learned at recess like doing cartwheels or hula hooping. She learned how to ride a bike on two wheels this fall and she likes creating little crafts that leave scraps of paper all over the house.  All of the kids have picked up a love of games from Shannon and it's been fun to watch them grow to age where they can play some board games on their own, and sometimes even without an argument!

Maddie continues to love life and love people, although she's definitely picked up some sass from her sister.  She loves taking care of her baby dolls, singing songs, coloring, and riding on her scooter.

Last year we had some apprehensions about how school would go for Maddie but she absolutely loves it, she has a wonderful teacher, and she has made many friends.  I was reminded this year how fortunate we are to be a part of the ICS community where Shannon teaches and the kids go to school.  When we weren't yet sure whether Maddie would be able to attend ICS due to her physical needs and limitations, we had a meeting with the administration at the school.  I was slightly nervous about this meeting because I wasn't really sure what they were going to say.  In the time that we've been here, we haven't really seen other kids with physical needs like Maddie and there aren't specific programs or accommodations to support someone with arthrogryposis.  But as Shannon and I sat down for this meeting, the first thing they did to start the meeting was with a prayer.  And it immediately put my heart at ease because I thought, "If God is in this, we needn't worry.  He will take care of her however it may be, whether here or somewhere else."  And as we opened our eyes, the first question they asked us was, "We just wanted to meet with you so we knew better how to accommodate Maddie's needs."  I'm not going to lie, I cried.  I cried because I'm thankful that my kids go to a school where they are loved.  I cried because my Maddie isn't forgotten or rejected, she's supported and loved.  And it is such a blessing to be at a place that loves like Jesus does.

First Day of School, Aug 2016

I've had a lot of people ask me how Maddie is doing as she had surgery again this past October.  For those of you that don't know, she basically had the exact same surgery she had last year, but on the opposite arm.  Her right arm is her dominant one, and with it she can now lift her hand to her mouth and feed herself.  She still needs some help if the meal has liquid, but it is so wonderful to see how she's gained independence in this area over the past year.

Since her right arm surgery went so well, her surgeons discussed doing surgery on her left arm.  Maddie wanted to "make my left arm strong too!" so went ahead with the surgery four months ago.  The surgery itself went great and the pain resided after a week or two, but Maddie hasn't progressed with this new transferred muscle as well as the first time around.  The problem is that some of the sutures anchoring her bicep to her elbow have pulled away, affecting her strength, lifting of her arm, and position of her bicep. Whereas she was able to lift her right arm to her mouth in two months post surgery last year, this year she is now just getting closer to lifting her left arm 90 degrees but it has taken four months and lots of physiotherapy and strengthening exercises to get to this point.  We have had many conversations with the surgeons over the past couple months, and this past Friday the surgeons decided that a second surgery will be necessary to repair the problem.  A new surgery date has been set for July of this year to re-anchor the sutures so that she can use her left arm better.

This news has been discouraging but we thank God for the blessings too.  While Maddie was in the hospital for her surgery and the week following her surgery, we were reminded how God always provides people that love and care for our family while Maddie is in the hospital.  As thankful as you are for the care received in a hospital, it's a tiring and sometimes depressing place because you (and I don't just mean the patient but the parents too!) just really want to go home and a plastic chair just isn't a very comfortable place to sleep.  We were tremendously grateful back in October that my mom was able to come in to help take care of the older two and for our friends that brought meals to our home, helped to take care our kids, made visits to the hospital or sent things to play with, and encouraged us with their prayers and love.  We had many people help our family as Maddie went through this big surgery and recovery, and we're grateful for her doctors and to have that kind of loving community here.

In October the day she got to go home from the hospital.  There's nothing that beats that moment when you get to go home!
Despite the slow progress Maddie has had post-surgery, there is so much she CAN do that she couldn't do before.  She can bend her left arm and that is something she could not do pre-surgery when her arm was locked in a straight position.  It's easier to put shirts on Maddie since she can bend both arms now!  It's easier for her to ride her scooter and feel a little more secure standing on it because she can adjust the bend of her arms when holding the handle bars.  She can put her arm around a bowl to help hold it in place better when she eats.  There is much to be thankful for that I didn't really think about until I was writing this post.  And regarding the surgery itself, the suture anchor at her shoulder, the bicep itself, and all her nerves in her arm are just fine.  Her bicep continues to get stronger as we work with her, and I am thankful that she can lift her arm almost ninety degrees.  Less than two months ago Maddie was unable to lift her left arm at all, and I was really concerned.  So, as disappointing as it is to hear that she will need further surgery on her left arm, I am encouraged by the progress that she has made.

Sometimes I feel like I need to remember the good so I don't forget that God is in this with us.  He's with us in the everyday, whether the moments are mundane and little, and he's with us in the big, joyous and hard moments too.  I would be lying if I said that caring for a child that needs extra help is all peaches and cream. :)  I don't like it when people think I'm a saint for adopting a child, or think I'm extra special because I adopted a child with physical needs because to me she's just our kid.  Period.  And we would love her regardless of what her needs were, just as we love all our kids regardless of what their specific needs are.  But it is true that caring for a child with physical limitations can make you weary.  We've spent the past four months going to the hospital around three times a week, and the extra appointments with her surgeons, getting fitted for three new splints (and two more to come), physiotherapy, occupational therapy, in addition to the stretching and strengthening exercises that we do at home with her every day are TIRING.  However, we also know that these things are needed to help her heal, recover, and get stronger.  The waiting and wondering if you made the best decisions as a parent for your child's care can be weighty.  We make decisions all the time as parents and hope and pray we made the best ones for our kids.  But when you're making decisions that involve cutting into your daughter's body, knowing that there will be risks that things may not work out as you hope, it's scary.  And if you're someone that prays for our sweet daughter on a regular basis that God would do some big things with her arm and her body, we ask that you please pray that Shannon and I would have the wisdom to make good decisions for Maddie's care.  We ask that you pray that we would have patience to care for her well, especially post surgery when after care can seem neverending.  The reality is that caring for our sweet daughter is a life long commitment, and sometimes knowing that is overwhelming.  The truth in that reality is that God cares for and loves our Maddie SO, SO much more than we know and he will always provide the strength, love, and perseverance for her (and us!) to keep going when all you want to do is give up.

The most patient person in all of this definitely hasn't been me.  I think Shannon would have to be a close second, but hands down it's been Maddie.  The girl has the ability to be patient when sometimes we've been waiting over two hours to see a doctor.  She does it with a smile on her face as she waves hello over and over to the babies sitting around us or chats up a storm with me.  She's a pretty incredible kid and her patience and joy humble me just about every day.

I realize that the great majority of our update is about Maddie and it's because a lot of this year has been spent focusing on her care.  Although I'm involved in lots of other things, this is really where my heart is the most.  I still take part in a moms' group, women's group, volunteering at the kids' schools, and helping out at church.  But my greatest ministry will and always be my family, and this year it's been hard.  It's been hard to have medical care take so much of your family's time when all you want to do is be able to play with your kids instead of spending it at a hospital.  It's been hard to be selfless when I want to be more selfish with my time.  It's also been so, so good to finally be a family without worry of finishing an adoption and to have three kids and a husband that are incredible despite these worries and flaws of mine.  I thank God for his grace because I sure have needed it this year.  

A milestone from this year is that in August, Shannon and I celebrated our ten year anniversary!  I am so thankful to have a partner in life that loves Jesus and loves his family so well.  While in the States this summer, we were not only able to see our wonderful families and friends, but also celebrated our anniversary with a trip to the mountains for a couple days while Shannon's parents watched the kids.  We had a wonderful time and we all loved being able to spend time with the people that we so dearly love in the US. :)

For those of you wondering how Shannon is doing, he switched from teaching 6th to 7th grade Humanities this year.  He continues to enjoy teaching in the middle school and ministering to his students.
Celebrating our anniversary this summer in Tennessee
Fun with cousins in Chicago
Fun with cousins in Tennessee

We ended 2016 with a short trip to Guilin and Yangshuo in mainland China, which is just an hour plane ride away.  It's an area known for it's unique mountains and we enjoyed family time together while getting to explore a new area.  It was the first vacation we had taken as a family of five without an agenda of finishing adoption paperwork, so it was so wonderful just to be able to enjoy time together.  I loved being out in the countryside, walking to the river, taking the kids for bike rides, and getting to see some tourist sites.  
Josiah was so excited when a kind villager let him hold the rope of the bull he was leading out to pasture.

Taken on boat ride from Guilin to Yangshuo

Hanging out at the Yulong River in the countryside near our hotel

Silver Cave, Yangshuo
Boat ride from Guilin to Yangshuo

Countryside in Yangshuo in front of our hotel

While walking to the river, we happened (or smelled) upon some pigs in pen houses.

 As I look to what this year holds, I am excited for what God has in store.  There are other stories from the past couple years that are also close to my heart, but I'm not sure I'm ready to tell them yet.  What I do know is that we're immensely thankful for what God's done and we praise him that we've gotten to witness him move like he does.  I recently attended a women's conference online called the If:gathering and it did much to rejuvenate my heart and soul.  Jill Briscoe, one of the speakers at the conference shared, "Go where you're sent, stay where you are, and give everything you got."  That truly is my prayer for this year that I would love Jesus more and love those around me as my Savior does.   If you need a jump start to refresh your faith, please watch her talk.  It's honest, it's real, it's funny, it's applicable, and it cuts to the heart.  You can watch it here.

If you somehow managed to read to the end of this very lengthy family update, bless you!  I'm amazed you made it to the end.  Thank you for taking the time to read it too!

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