A Bitter-Sweet End to 2013

“I think we made the right decision.  But I do feel disappointed.”  This was (more or less) exactly what I said to Kim today on our car ride home from Children’s Hospital of Philadelphia. 

Our little Leo had a scheduled appointment there today with C.H.O.P.’s cardiology department. 

A little background: Wolf-Hirschhorn children are prone to many and wildly varying medical challenges.  One such challenge is something called an Atrial Septal Defect (A.S.D.), or, put more simply, a hole in the heart.

We knew Leo had this condition but we have not been rushing to take any corrective action.  Leo’s A.S.D. does not pose an immediate threat to his health, and up until now Leo has been too small for elective (or semi-elective) surgery.

The bottom line here is that Leo has a hole in his heart, and it needs to be repaired.  He’s not in any immediate danger, but if his A.S.D. goes untreated, the consequences for him could be dire at some point 10 to 20 years in the future. 

Today’s cardiology appointment was to determine what our options were.  We had been holding out hope that Leo would be eligible to receive a catheter-based procedure that would be a lot (and I do mean a whole lot) less invasive than open-heart surgery. 

But Kim and I were both disappointed to learn that the hole in Leo’s heart is just too big for this approach.  We spoke with a very-approachable, down-to-earth, cardiologist who just happens to have made the catheter-based procedure his life’s work.  When he said “If it were my child, I would not do this” we knew our decision was made.

Leo will have open-heart surgery sometime in the early spring of 2014 (like, april-ish). 

So, tonight, Kim and I are a little disappointed because we won’t get the easy option that we had hoped and prayed for.  But, we are a whole lot grateful.  We are grateful for a God we can trust, even when He doesn't give us exactly what we want.  We are grateful that our Leo is healthy enough for us to even have this conversation.  We are grateful for the family and friends that will join us in praying for our little man in the days ahead.  We are grateful to live within driving distance of the world-renowned C.H.O.P., and the great, personable, doctors we have connected with there.

Today’s visit to C.H.O.P. was a kind of sobering end to 2013 for us.  But it was also a reminder to be grateful for all that we have, and to not take for granted the children that God has blessed us with!

Can He Hear?

The initial information we received before even meeting Leo was that he was deaf.  We quickly realized when we met him that he could hear.  But there was always a question as to the quality of what he is hearing.  Leo has had numerous- at least 5 hearing tests and an ABR- in his short 3.5 years of life.  He is on his third set of ear tubes.  Today, for the first time, Leo finally passed his hearing test.  He will continue to be followed by ENT every six months or sooner and will have another hearing test then.  As he grows, they can perform different, more accurate tests that will allow us to really know if his hearing is 100%.  For now we assume that like his brothers he is developing selective hearing when he ignores me when I ask him to clean up his toys :)

December will be a busy month for Leo as he sees the plastic surgeon for his cleft palate and also the kidney doctor.  Probably the appointment we are most anxious to have is with the cardio team at CHOP December 30th to hopefully decide if the hole in his heart has closed, if it can be cathed or if he will need open heart surgery.  Please continue to pray with us that the hole closes, which would be a miracle!

If a day filled with appointments wasn't enough... formula leaked all over Leo and the car seat when the attachment came undone somehow.  Not sure how much of that feed he actually got and then for some strange reason at a later feed his pumps battery died so we had a difficult time finishing that feed as we were in the middle of a store when it happened. You would think these would be all good reasons to eat but Leo disagrees. The adventures of a feeding tube continue.

4 Years Home

Four years ago this weekend, Jeremy and I met Jonathan for the very first time. As I was tucking him in bed last night, he asked me about the first time we met him. Lately, Jonathan has been asking questions. Questions like was I in your tummy? Was Ben in your tummy? How did you know I was in China? We do our best to answer all of his questions in a honest way and at the same time stress to him that he is loved and he is our son.

Meeting for the first time.

Jonathan is now 7. He is beginning to figure out his identity and what it really means to be adopted. We cycle. Jonathan asks one or two questions, we answer. Jonathan then becomes silly. Silliness is his protection.  I think he is protecting himself from the fact that he did enter our family differently then "most" of his siblings.  Jonathan witnessed Leo's adoption and he knows in his mind that Leo has another mommy, but I don't think that information has reached his heart yet.  Why?  Because if he acknowledges that Leo has another mommy than he will have to come to terms with the fact that he has another mom.  He is not ready to go there yet.  I wish his China mom could see him now.  See how well he is doing.  See what an incredible boy he is.

Brothers (first weeks home) I have also been reflecting on how far Ben and Jonathan have come in their relationship in four years. When Jonathan came home, something happened that we knew would, but not to the extent that it did. Jonathan and Ben are just 13 months apart in age. Ben is older. We knew we would have to deal with some jealousy. We knew that Ben and/or Jonathan might have trouble adjusting and sharing but what we didn't realize was how much Jonathan's arrival would impact Ben. Ben's world was turned upside down and shaken to the core. He regressed horribly. Jonathan did great. It was like he had always been here. He fit right in. Ben wanted to send him back. It took a little longer then a year for things to even out and for Ben and Jonathan to really become brothers.

 They have come so far in the last four years.

Today, the two of them still fight. Ben still need what he calls "loney" time (which is his way of saying "I need my space"). But I really do believe they love each other like brothers. They are family. Some days you might even say they are friends. They either are playing great together and getting along great or they are battling. There doesn't seem to be any middle ground. Ben definitely needs his space and time alone and if he has that he is good.

Jonathan has thrived and grown so much in the last four years.  He is a chess champion.  He is reading. He is excellent at math.  He is a social butterfly and makes friends with everyone.  According to him, he has the biggest muscles in the family.  He knows who God is.  He is now part of AWANA and has been actively memorizing a ton of scriptures.  We are waiting for the day that his relationship with God becomes personal.  We are so blessed to have Jonathan as part of our family.  It hasn't all been easy, but nothing worth having is. Probably the biggest compliment to Jonathan is when Amanda says- "Yes, we can adopt again but it needs to be another Chinese boy just like Jonathan."

We love you, Jonathan, and are proud to call you our son.

A Crazy Kind of September

It has been a long time since we last updated the blog.  I guess you could say we have been too busy living, enjoying and at times barely surviving life. To say the month of September has been full would be an understatement. (sorry to those who have the blog emailed to you, the first email was not completely finished)

Our month began with Amanda starting 9th grade at Neshaminy High School.  So far so good although it has been a learning experience for all of us as this is our first "traditional" school experience with all of our kids.  For me it has been an experience in giving up control and learning  trust.  For the last 14 years I have had complete control of Amanda's life and schooling (or at least I thought I did :).  I have been able to adjust her schooling to her learning style.  I have been able to speed up the learning process or slow it down as necessary.  For the most part, I (as teacher) determined the grades.  We could easily retake a test or drop the lowest score.  Amanda has always scored very well on the standardized testing and was usually above grade level so we really were not too worried about her performing well academically.  I guess the key word in the last sentence is performing.  We are being reminded school is 99% about performing and meeting the expectations of 7 different teachers.  I am not there holding her hand through the day.  I am not there to speak up on her behalf during each class. I am learning to let go and trust.  Trust Amanda to to make good choices.  Trust Amanda to speak up when needed.  Trust her to talk to her teachers when necessary.  Unfortunately, I can be a slow learner and so to be completely honest we have had some rough days as we learn how to navigate this new chapter in our family. On the upside, Amanda is loving the whole school experience and perhaps adjusting better then her mom.

Next up was Jordan's10th birthday!  Double digits.   Jordan is such a great, easy going kid.  We began his birthday with breakfast in bed.  Homemade pancakes with sprite.  Jordan's best friend Nate slept over and we headed to the Lego Discovery Museum for the day.  Everyone had a great time.  It was the perfect way to celebrate Jordan's birthday as he loves legos.  We ended the day at the Chinese Buffet.  According to Jordan- this was the best birthday ever.

This month has been challenging for me.  Finding a new way of relating to Amanda and her schooling, homeschooling the 4 school age boys, and working with Leo and managing his 5 weekly therapist visits for him. Each child is also involved in other activities like music lessons and chess club.  We are learning to manage what can be a busy schedule at times. 

On Saturday, I participated in the Mudderella.  This was a six mile course that consisted of 15 obstacles.  I was part of a team of 19 individuals. I have never, ever done anything like this in my entire life.  I am not sure why I signed up for it except I gave into peer pressure?  The best part was completing this course with some of the greatest women and a few men I know.  The majority of us trained together before the big day.  We had no idea what to expect but went into it with a sense of unity and that no matter what we were going to complete this course and not leave any man behind.  I personally began the training feeling like a frumpy, 40 something, homeschooling mom of 6 who really had no business registering for this event.  By the end of the course, I felt like I could take on the world.  This course challenged me physically and mentally.  There was one pivotal moment on the course.  Up until this point the obstacles had been hard but not impossible for me.  But then we came to the cargo net.  One big cargo net suspended between 2 trees.  Probably 10-15 feet high and it swayed back and forth as you climbed it.  I was ok climbing up but once I got to the top I panicked.  I froze.  The net was swaying and I was expected to somehow swing my leg over the other side of the net and climb down that side.  The net was filled with women (and men) climbing quickly up and over like it was nothing.  I almost let fear win and was extremely tempted to climb back down, but here is where my team stepped in.  Many were already on the other side.  They realized I was heading into panic mode and they talked me over the net and down the other side.  Once my body had somehow managed to climb over and I had my footing on the other side, I think I almost floated to the ground.  To say I was happy when I hit the ground would be an understatement. I was so proud of myself for overcoming my fear.  I couldn't stop smiling.  The cargo net was about half way through the course. I went into this course wanting to challenge myself but also prepared to skip a few of the obstacles.  I am proud to say I completed them all!  I am still sore, but I am so thankful that I competed in the Mudderella with Team Determination.  I will never forget this day and when life gets hard I know I will think back to those cargo nets. 

Through all of this craziness God has been faithful.  We are far from perfect parents (just ask my kids) but every so often God gives us confirmation that we are on the right track. We continue to seek God's will for our family. Not sure what the future holds, but we know God is walking each step, everyday beside us even when life is hard and/or crazy. 

7 years old- 3.5 years a family

It is only fitting that we honor Jonathan Futing Shafer today. You can find Jonathan's story here

Today Jonathan turns 7!  We met Jonathan for the first time on November 9, 2009

I just watched this video that Jeremy created while we were in China.  Oh my, I cried again watching it - click here to see it 

Jonathan would be a perfect candidate for the nature vs nurture debate.  So much of his personality is like the other kids but then there are those moments where genes definitely dominate.

 Today we celebrate with breakfast in bed and a picnic dinner!

Happy 7th Birthday, Jonathan!  It is a privilege to be your Mom.

Complacent or Crazy

A lot of times we (including myself) can become complacent in our lives. So the question is how do we not fall into the trap of complacency? I believe part of the answer lies not only in following God's directions for our lives and fulfilling His commands but also in accepting some challenges that come across our paths especially ones that might just seem a little crazy.

Over the past 2 years, Jeremy, Amanda and more recently Tyler have taken to training for and running in various 5k races. The training has been a time for them to get one on one time with dad, do something that they enjoy, and be active. My role has been to basically take care of the other kids so training could occur and watch the littles during race day. As I recently told both Jeremy and my sister, I am an excellent cheerleader and organizer- not so much into actively participating.

God had another plan. I am not exactly sure how, but in some crazy twist of events, I registered to participate in the Mudderella.

Description from website- “Mudderella events are world class, 5-7 mile long obstacle courses designed by women. With 12 - 15 obstacles, these courses will test your stamina and willpower.”

Keeping in mind, I am out of shape, have never ran and really dislike exercise- I have questioned why I am participating in this event. The thing is, I am not in this alone. I am part of Team Determination. A group composed of 9 people so far- 7 women, 2 men.

 I can't speak for my teammates but I am going to make an observation. There seems to be a theme among our team and that is that most if not all have chosen not to be complacent in their lives. They have chosen to challenge themselves and live lives that many would consider hard and even crazy.

 I just want to highlight one team member. She and her family are living what many would consider a crazy life. They have committed themselves to serving in Kennsington in Philadelphia. Kennsington would not be considered a safe neighborhood. It is considered the inner city. A very poor neighborhood filled with violence. This teammate volunteers there with neighborhood kids at least two times a week. She is there numerous other times participating in the local church. They don't just sweep into the community to help, but rather they have made themselves members of the community building relationships and friendships. Their life is anything but complacent. They are an example to me of being the hands and feet of Jesus to the least of these.

 Team Determination is made up of women and men who have chosen that they want to push themselves. They want to do something crazy and get in shape in the process. The majority on our team would not consider themselves athletic. Most of us are not in the best of shape, but that doesn't matter because we know we can do this. We know with hard work we can push ourselves to the limit and accomplish what look like impossible obstacles.

Right now as a family we are in a holding pattern. Praying and waiting for God to reveal what our next step should be as a family. God is moving and some things are beginning to take shape, but it would also be easy to fall into a state of complacency and not move out of it. That would be a sin. So what do we do during this waiting period? We will be praying for God's direction, we will be involved in some local ministry opportunities, and for me personally I will be participating in the Mudderella. I will be pushing myself farther physically and mentally then I ever have before. I will be training with an awesome team. I believe completing this event will help prepare me for what God has next. If we are going to do hard for God, we not only need to be prepared spiritually and mentally but we also need to be prepared physically and so this week I began my Mudderella boot camp!

Back from Uganda (at last, a blog post!)

I am back. I have been back from Uganda for over a week now. I have pictures.  I have notes -- stuff that I jotted down in stolen moments. You'd think that, from those things, I would have been able to cobble together a blog post by now.  Maybe a couple. 

I have tried. So far, every draft I have written sounds pretentious and/or dumb. I was in Uganda for ten days. Ten. That's  not long enough to really understand much about a country or a people or .... anything.  I only started to learn some things about Uganda, and there were some surprising things I learned about myself too.

But before I write about any of that maybe I should just sum up the trip. In ten days my team visited four different orphanages. Each one was different and we fulfilled different roles in each. I went with a great team of people put together by International Voice of the Orphan ( IVO). You can learn more about IVO on their web site. 

My team worked and played at a home called "Praises House". We made multiple visits to a place called Sanyu Babies Home. We spent another day in an orphanage called "Redeemer House", and our last days of service were on the campus of "A Perfect Injustice". 

We also spent a day in one of the slums of Kampala. If I write about anything at all, that is what I need to write about. 

That was, for me, both the best and the worst day. It was the most unsettling, and the most rewarding. It is morning time, now, here in Philadelphia, PA. That means that it is late afternoon / early evening in the slum we visited. There, in that slum, there are boys no older than my Tyler and my Jordan who are on their own. Some are run-aways. Many have been abandoned by their families. 

Tonight they will huddle together in teams.  These teams are formed not for a sport or a game, but for self defense. I cannot imaging what the evening holds in store for them. They are on their own. It makes me want to cry and shout just thinking about it. They are still there, I am here. I am safe.  They are not. 

On the day we visited the slum one of the first things we saw was the ditch that runs around the slum area. It is used for bathing, and washing clothes. 

We met the boys in a ramshackle structure known only to me as "the church". There we played games with the boys. We had a limbo contest!

Elyse and Keith from our team led a lesson about the body and the mind, and how the body needs a healthy mind to control it. 

We had relay races. 

We played soccer.

We had a time of testimony and prayer. Christy was the youngest member of our team. She was able to share how her father lost his life, serving as a missionary in Uganda. she was able to share how God had strengthened her in her time of loss. 

Mike was able to share about how he, at a young age,  lost his mother to cancer.  He too was able to share how God had strengthened him.

Dwight explained Christ's gift of salvation. Many boys raised their hands to accept that gift. 

And, yes, we ate. The boys were fed: beans, posho, and a pot-sticker/dumpling.

I wondered how long it had been since some of them ate. Had it been a day?  Two days? Three?  This place called "the church" only permits feeding teams to come 3 times a week. I'm not sure why. None of us mzungu (foreign traveller) people know why. But three is much better than zero. 

The day in the slums was the best and the worst. It was hard to see boys living without moms and dads. It is harder still to think that most are still there, right where we left them. (Some do get rescued... more about that another time.)

These boys already know too much about pain and loss.  Yet, here is the amazing thing: when their youth leader says "God is good" these boys respond with "All the time".  And when the youth leader says "And all the time" they will say "God is good" ... With smiles!

So I began to learn a few things that day. I saw that God really does offer hope in dark circumstances. I observed spiritual wealth in a place that was materially poor.  And my small problems were put into proper context (like, a context about the size of a matchbox). 

Is there more to say about this? Absolutely. I will have to write more later. 

But for now I will conclude with this. It was worth it. It was worth it to be with those boys for a day. It was worth it to be of service if only for a short while.  All the other places we visited were worth our time and effort too. It was worth it, and I'd go back in heart beat. 
.  

Why Uganda?

I suppose it is a little odd to start blogging about a trip before your bags are even all packed. But, in case you haven't noticed, I can  be a little odd sometimes.

For those of you who don't know, I will be heading to the city of Kampala, in Uganda (west Africa) early next week. There I will be volunteering my time and energy to an orphanage sponsored by international voice of the orphan (IVO). If you want more details about the work I'll be doing, you can read about it here.

 As I tell friends, family, and coworkers about my travel plans, I can't help but sense an unspoken question.... WHY??

 

 

I have to admit. It's not an easy question to answer. At least, it's not easy to answer in a sound bite. A short two week trip to Africa does not jibe with my normal rubric for decision making. When spending vacation time, I normally think in terms like this:

1. Will it be fun?
2. Can I afford it?
3. Will it be good for my family?

Clearly I am some  kind of crazy. This trip fails on all 3 levels but I  going anyway.  The point of the trip is not to have fun, and I don't expect to have (much) fun.  This trip is a financial stretch for me.  And I am already missing Kim and the children who will be staying here in the good ol' USA. I am pretty sure they'll miss me too. A lot.

So, WHY? Why go?

Well, for starters, there's this blog post here. You should go read that.

And there are other reasons (or at least similar reasons with different clothes on).

 Here are my reasons for going to Uganda in my own words.

I want to serve.  A great man once said  "all that is necessary for evil to triumph is for good men to do nothing."  Uganda is a country where evil triumphed for a long time ... Either under tribalism, British imperialism, Idi Amin, or the terrorism of the LRA. I really don't care much about all the "isms", but I am aware that there is a legacy of pain here. In such a place as this, can I demonstrate love and hope to some children and their caregivers who are in material need? Can I befriend some people who suffer from a history that they did not write? Yes I can.  No one can do it all, but everyone can do something. I can do something.

I need to know.  I do wrestle with the expense and time commitment of this trip. I wonder if it would be better to be of service somewhere here in the USA. But somewhere in the back of mind I have this idea that America is the land of opportunity. Other countries cannot make that claim. My opinion is that even the poorest persons in the USA have opportunities and options that many in the world do not.  I need to know if my "land of opportunity" idea is really, really true.

 I remind myself that this trip is not all about efficiency of time and resources.

If you disagree with me, and you think that charity begins at home and stays at home, you are 100% OK and entitled to your opinion.  I would however, challenge you to act on those convictions of yours if you aren't doing so already. 

I need perspective. Like most Americans, I think I am pretty much brain washed most of the time. I spend an inordinate amount of time concerning myself with material things and comparing what I have/don't have with everyone else. That's a sin. It's shameful to live that way when many people in the world (40% of the world's population) live on less than two dollars a day.  I don't want to waste my life trying to keep up with the Joneses.... and a little Ugandan perspective just might make a lasting impression on my heart and mind.

I want to meet people. I am really looking forward to meeting the Ugandan caregivers and my fellow team mates. It's a rare breed of person that is willing to take a big risk in order to chase a big, intangible, and elusive goal.  The more connections I have with people like that, the better.

God told me to. (So there!) I know this doesn't make sense to everybody, but I do believe that God speaks to me in a variety of ways.  Going on this trip is something that God has impressed upon my heart. I didn't hear any audible voice from God but his instructions were clear enough to me. So, I should go.

My Christian brothers and sisters will have no problem at all understanding this. Others, alas, not so much. It's like the old saying goes "to those who have faith no explanation is necessary. To those who do not, no explanation is sufficient."

So there you have it -- those are my reasons for going to Uganda; the good and bad; the altruistic and the selfish.

 Now, at last (ha Ha!), I have a short answer to the "why Uganda?" question.  Now I can say "go read my blog".

 

 

Ben turns 8 and a Romantic Get a way!

 Ben turned 8 on Monday!  He was so excited as he received a drum set for his birthday.  He also started drum lessons with a college student this Tuesday.  We will just say I have never seen Ben sit so still and concentrate so hard as he did during his half hour lesson.  

 Traditional breakfast in bed!

 Jeremy and I had the greatest opportunity to go away- just the 2 of us this past weekend. We met up with our bestest friends, Carrie and Chris. We had a wonderful time. It was such a relaxing time.  Jeremy and I were able to reconnect and talk without being interrupted.  It was really a much needed time for us as a couple.  We are forever indebted to Mom-mom for moving in and taking over all of our duties at home so we could go away. She had awesome help in Lauren, Amanda and Pop-pop.  Mom-mom left our house extremely tired Sunday night.  We are hoping she forgets how tired she was by next year so we get to go again!

 Not totally planned, but the only weekend we could all go away just happened to be my birthday.  A delicious edible creation was delivered to our room. Thank you, Mom-mom!!!
We went to the romantic city of  Scranton, PA.  Nothing fancy.
Carrie and I hit the thrift stores and Kohls and the guys saw Iron Man.
Good food, lots of Ritas, card playing and just being together as a couple and friends.

 Carrie and I have been friends since college.  

We won't say how many years that has been.

I am so thankful for her friendship and treasure it.

We both got a basic pedicure, which led to many laughs.

I know some couples, who won't go away without children. That just doesn't make sense to me. God first, marriage second, children third. If my marriage tank is not full, then I can't give effectively to my children. My marriage needs to be nurtured. For us that means getting away and spending a day or two together without children. Getting away strengthens our marriage and I am so thankful that we have the family support to be able to do it.

Upheavel In the Village

We are huddled in the living room experiencing ultimate family bonding as the workmen tear up and install a new kitchen floor.  Not sure what I was thinking when I thought we could continue homeschooling and living life in one room ALL TOGETHER.  It is only 8:30 and one child has already been in tears and Leo has already torn up a math book.  I am thankful for a new kitchen floor but I am thinking we probably should have gone out for the day or at least declared it a watch as much tv as you want kinda day.  I may resort to that last option within the hour.

It looks like we get another week off from therapy as they are working to assign us new therapists, who will come to our home to work with Leo.  We are both still feeling good about this decision. I was surprised by how much positive feedback I received about  keeping Leo home.  Apparently, more people agree with this decision and have strong opinions about it but were hesitant to share not wanting to influence us.

Our new friends from New York are staying with us this week as their daughter has appointments at Shriner's all week culminating with surgery on Thursday.  They arrived last night and it was so good to see Alexsandra and her huge smile.  She is a sight as she has a cast on each of her legs and a cast on her right arm. She continues to smile.  I don't know if I would be smiling if I had even one cast.  Today she is getting all three casts off and her mom is looking forward to her being able to play in the tub tonight.  It will be her first bath since February as she has had casts on since then.  Alexsandra will experience 3 days of freedom from all casts but then on Thursday she is having hip surgery and will once again have her legs casted for a month.

Alexsandra's mom and I were talking last night about how resiliant medically fragile kids are.  She was relaying stories of children she has met at Shriner's who are in casts and braces and yet they still manage to get around and smile.  Kids adapt.  Kids realize there are more important things in life then the silly stuff we choose to worry about.  Kids, who have been through more medical stuff then anyone should ever have to go through, get life.  They know what is important.  They choose joy.  They choose not to let their physical limations get in the way. 

We have witnessed this first hand with Jonathan.  Jonathan, at this point in his life, does not realize he is "different" from other kids.  He doesn't know he should be slower because he only has one leg.  He doesn't use having one leg as an excuse not to do something.  He doesn't know better.  In some ways he has accepted the fact that he has one leg, he doesn't dwell on the missing leg, he adapts and lives life to the fullest. 

How often do I let problems get me down?  I focus on the problem.  I refuse to adapt.  I refuse to move on and I dwell on the problem.  I don't move on. The end result I miss out on joy. 

Today, I need to follow the example of Alexsandra and Jonathan and choose joy no  matter what problems rear their ugly head.  

Leo got a new set of wheels for his birthday!

 Cake by Amanda

 Ben agreed to a combined party with Leo once he realized he

would get presents early!  His birthday isn't till May 20th- smart boy.

Drums- what were we thinking?