Happy New Year's!

I walked into the kitchen this morning to find this list on the whiteboard.  Tyler was standing there with a marker in his hand.  He took it upon himself to come up with the "Shafer Family New Year Resolutions".

I like his goal for today- "Thank God for this year."  I do believe we will need to spend some time doing that today.  So much has happened in the last year, good and bad, but God was walking beside us every step on 2012 and for that we are thankful.

In looking at his goals-
I am all for #1- be healthier,
#2- watch less TV,
I wish #3 could happen- go to Great Wolf Lodge, but not sure that is a realistic goal for 2013,
#4- 20 minute devotions- excellent goal
#5- Leo walks, talks and eats!  This is probably my favorite of his goals.
#6- adopt one more child?  Love the question mark, wonder is Tyler being prophetic, guess we will have to wait and see.  (and no I didn't put him up to that one, Tyler and Jordan are both supporters of adoption and would love another brother)
#7- to do this better next year with better spelling- he is keeping it real.

As the day has worn on, others have added what has become a goal/wish list for 2012- go to Disney- someone was dreaming big, do better at math, sleep more, Daddy and Mommy read through the Bible together and the list goes on.

All good things, I love that a number of them point our focus back to God.  We are excited to see what God has in store for our family in 2013. 

We wish you and your family a 2013 full of God's blessings.

Keeping It Real

This week Leo was called feisty by his physical therapist and stubborn by his feeding therapist.  Both thought these were good qualities he was developing.  I'm not so sure.

Last night we went to the Mount Laurel Living Nativity.  We had a van full (our gang plus 4 friends) and met more friends there.  On the way there, we remembered we had forgotten to put the stroller back in the van (we had taken it out for our trip to Nana's due to lack of space)- strike #1.  Jordan then informed us he had forgotten his coat (the nativity is outside, it was cold, and it takes about 45 minutes to walk through the nativity)- strike #2.  We arrived to discover that somehow Jonathan had only brought one of his crutches- strike #3!

We had to carry Leo.  We had to carry Jonathan.  Thankfully, Ben had a coat on that had a zipper lining so he "shared" his coat with Jordan. 

In the end it was a great way to kick-off the Christmas Season and we really enjoyed doing it with family and friends! 

This afternoon Jeremy, Jonathan and Ben are at Sesame Place courtesy of the Variety Club's free tickets.  Before they left we made sure they had coats and Jonathan had 2 crutches! 

All that I dare say ...

A while back, Kim wrote something vague here along the lines of "Jeremy has some exciting news to share."  It's been a while, I know, and I haven't offered any explanation whatsoever.

So, it's time to set things straight.  For starters, I am now in touch with an organization called International Voice of the Orphan.  IVO is "passionately committed to care, comfort and advocate for orphans around the world."  Among other things, IVO coordinates short-term missions trips each year.

I reached out to IVO and plan to be part of a team going to Uganda in June for about 2 weeks.  The team will volunteer at an orphanage, work on a service project, and support our brothers and sisters in Christ there.

This is really very exciting, and I hope that this is the beginning of a longer relationship with IVO.  Who knows?  As my children grow into teenagers, maybe someday I can take one or more of them with me and we can serve together.

I'm asking friends of mine to pray for me with regard to this.  Specifically:

1. That I would be able to budget my time away from work to make this Uganda trip. (Basically, I can't get sick or have family emergencies. And that's always a wild card in a family of eight! )
2. That God would provide the finances necessary for me to go (I'm at the "I think I can" stage!)
3. And (most importantly) that I wouldn't lose my nerve.  

Believe it or not, that is ONLY HALF of my exciting news.

The other half has to do with a work opportunity that has come together for me that I will be able to do in addition to my regular duties at Temple University.  This is a teaching opportunity and it is something that I have attempted to "break in to" for several years.

Honestly, I had pretty much given up on the idea.  But not long after reaching out to IVO, this opportunity all started to come together very quickly.

I feel like this is a confirmation of my decision to pursue the Uganda trip, among other things.  Time and again I have been reminded of Galatians 2:10 where the apostle Paul writes about being commissioned to do "the very thing" he had longed to do.  And, yes, it'll also help a lot with the money side of the Uganda trip.

It is very encouraging when you sense that God really is ordering your steps!

So, there it is,  my BIG NEWS ... a trip to Uganda in June, a sense of calling, and a once-abandoned desire suddenly fulfilled.  Nice!

A New Friend For Leo

Yesterday we had the opportunity to meet Tanner and his mom, Jessica. Tanner's family had donated one of the Ipads to the WHS Halloween Contest. Since they live relatively close to us, we decided to meet at a mall so Tanner could give Leo his new Ipad.

Leo was actually more interested in Tanner's Ipad as it had Elmo playing on it!

Apparently, there are quite a few families whose children have WHS in our general area. They get together every few months. We are looking forward to connecting with these families and Tanner and his family. What a great side benefit of winning the contest.

We may have made a mistake in telling the boys that Leo would share his Ipad with them.

He actually is quite possessive of it and will "yell" if anyone tries to take it off of him.

I think he looks smarter just holding the Ipad. The look on his face is a look of power. He knows he has what his brothers want.

God is Good

This is how Leo spends most of his days...

• 

pushing cars, any car from one part of the house to the other

and on any surface. Someday I hope to hear him say, "Beep, Beep!"

Jeremy has some exciting news to share. It is so awesome to pray for something for a long time. Almost give up hope of it ever happening and then have God surprise you out of the blue. I will try and get him to share soon!

In Case You Didn't Hear....

WE WON!!!!  I realize that not all of our blog readers are facebook friends so I wanted to make sure we got the word out that Leo the Lion came in first place with 501 votes.  Thank you to all who voted for him.  We are waiting for his new ipad to be delivered.  Jeremy has promised to help me learn how to navigate the ipad and how to download apps that will be most beneficial to Leo (and his brothers).  We are anticipating using the ipad for developing some fine motor skills, cause and effect skills, and fun interaction when he is eating and has to be in his high chair.  Thank you again for voting and helping to spread the word. 

Leo is doing so well.  Last week his PT helped him climb up on our turned over laundry basket, which was pushed against the sofa,  to finally climb up on the sofa.  He was so proud of himself and continued to do it at least another 15 times.  I was especially pleased when our PT said repeating a learned skill like that over and over is typical toddler behavior.  Yea!  Typical toddler- not words usually associated with Leo.  Eating is still a work in progress, but I have hope that someday he will eat by mouth.  He is also using the sign for "daddy", "more" and "I want" somewhat consistently.

Life is busy as like everyone else we are gearing up for Thanksgiving.  Jeremy spent some time tonight helping our nephew work on a graduation project for school.  We are catching a glimpse for how demanding high school work can be and how much a teenage boy can eat.  I do believe I will be in trouble when all 5 boys are teenagers. 

We have some exciting things in the works for 2013 and will take the time to share them in a later post.  God is at work and is opening some doors we are excited to walk through. 

Leo Needs Your Help

Sorry for the desperate sounding title but Leo really does need your help.  We have entered him in a contest to win an Ipad.  Leo is entered in a contest on the Wolfhirschhorn website.  The top winners will receive an Ipad.  This technology could really help Leo with his therapies and his life in general.

The purpose of the contest is to draw attention to Wolf-Hirschhorn syndrome and to educate people on what it is by getting them to this amazing site that educates parents and families. Kevin, who runs the site, is actually the first person we contacted to learn more about Wolf-Hirschhorn when we were considering adopting Leo. He spent over an hour on the phone with Jeremy answering all of his questions. The parents we have "met" on this site are incredible and have been an encouragement to us. We actually don't like that we are competing against them.


What we need: we need you to vote for Leo!!!! You can only vote once. So, could you please encourage your friends and family to vote, forward this blog to everyone and put something on your facebook account if you have one!!!! Leo needs all the votes he can get.

Go to this site to vote:
 http://wolfhirschhorn.org/2012-halloween-contest/
Leo the Lion with the cute blue glasses is about half way down the page!

They ran this contest last year, but we didn't enter b/c Leo was in the hospital having surgery. Last years winner had over 700 votes, so you can see the competition is stiff as the prize is so great!

The Contest is open till Saturday, November 10th

Walking Together

Video

Jonathan loves Leo. He is always wanting to help Leo. I also think Jonathan is a little jealous of Leo's walker. He loves to fly through the house using Jonathan's walker. 

 Leo is doing really well using his walker. He is getting stronger and stronger each day. We are looking forward to the day when he will walk on his own. He is also understanding more and more. Tonight during Bible time Jeremy said if you have a question raise your hand- as he said "raise your hand" Leo's hand went right up. He had everyone laughing. Progress, slow and steady progress is being made.

The Club

There is a club. When some find out they are going to be a part of it they simply choose not to be.  When others find out they are going to be a part of it they make the brave choice to embrace what they consider to be their "lot" in life.  Others while embracing their membership, grieve for the dreams that may die.  Many accept membership to this club as God's will for their family.  Some like Jeremy and I voluntarily choose to join this club.  I have met so many other families that are volunteering to join this club and they are some of my heroes as they have "joined" multiply times. 

Thursday I was quite sure I didn't want to be part of this club anymore, but by Saturday I was so thankful I was.  This club is the club of kiddos who have special needs.

On Thursday, Leo and I headed off for Children's Hospital to take part in their cleft palate clinic.  It was our first time going.   We were told to be there by 9:00 and that we would probably not be done till 4:00.  In hind sight, I probably should have cancelled.  I was tired.  We hadn't had power since Monday night.  Thankfully friends loaned us a generator, but that still only provided limited electricity and I hadn't been sleeping well.  The short version of our day was that by 2:00 we had seen at least 4 doctor's none of whom added much to Leo's life.  They all basically said - "your doing great, keep it up".  At 2:00 (still not having had lunch) I asked how many more do we need to see.  They then proceeded to list 4 more- one of which was the dentist (who I really wanted to see) and a psychologist.  Telling me my child needs to see a psychologist basically put me over the edge.  He is happy, he is non-verbal, he is two.  I might have needed to see the psychologist after my day, but Leo not so much.  I started crying. (Why I don't know.I was done, oh so done).  The nurse not sure what to do with me immediately got us in to see the dentist and then gave us our walking papers and told us to go home.

There were probably 20 other families there, but my guess would be that for most, certainly not all, this was their yearly trip to Children's to have things checked in one day.  The thing is some months, Children's is my second home.  We see so many specialists there that to spend a day seeing more specialists who really aren't going to add anything to Leo's life is a waste of time in my opinion.  Apparently, the cleft clinic is a yearly event.  We shall see what next year brings, maybe by then Leo will be talking and able to really give the psychologist an ear full.  At the end of the day, I decided I really didn't want to be part of the cleft palate club anymore.

Thank God for Saturday.

On Saturday, I headed out to Davisville Church where I participated in Caregiver Day.  The leadership at Davisville has a heart for families that care for special needs kids and they provide such amazing care for those families.  Caregivers day started at 9:00 and finished by 4:00, but I left looking forward to next years "club meeting".  You would never know by looking at these women that they were part of the special needs club.  Except, for the fact that we all looked tired.  These were incredible women, who have chosen to see what a blessing their children are.  They love their children and can not imagine their lives without them.  They fight for their children.  They battle bureaucracy daily for their children.  They want what is best for their their child.  They love fiercely and deeply.  They are in it for the long haul.  I had the privilege to spend a day with a group of amazing women.  We were all treated to breakfast and a hot lunch on china dishes.  They cleaned our cars while we were inside being pampered.  We got haircuts, manicures, foot massages, hand massages, body massages, chocolate, eye brows plucked.  We listened to each others stories and were an encouragement to each other.  This is a group I want to be a part of. I left feeling relaxed and rejuvenated. 

The honest truth, some days being part of the club is hard (ok a lot of the days can be hard).  But the majority of the days it is so rewarding.  I am rewarded daily in smiles, giggles, and hugs.  I am so thankful that God chose us to be parents to a special little boy. 

Living Life or Writing Life

Leo working with his vision therapist.

There is always a choice to be made between living life or spending time writing about life.  Life has just been so busy lately that writing has taken a back seat to living. 

Do you mind, mom, I am trying to read my book! 

I am trying on a daily basis to have Leo use his walker.  This doesn't sound like it should be a big time, consuming thing but it really can be.  First you have to get his sure steps and shoes on, then find the walker, then clear a space to walk or give up on picking up a million Legos and just go outside to walk.  Leo is doing a fantastic job when we use the walker.  

Today, I was feeling especially brave so on our way home from Amanda's violin lesson we stopped at CVS and the Dollar Store.  Leo used his walker in both stores including the walk from the parking lot to the store (traffic was minimal).  He did great although he did feel the need to stop and greet every lady that went "ahh".  He also attempted to stop and shoplift several times, but I did make sure all items were either paid for or returned.   Jeremy just so happened to call while we were in the Dollar Store to let me know he needed to work late, so I instructed Jordan to pick up an extra pack of peanut butter cups to help get me through.  

Life is also just full with homeschooling 5 kids.  The boys like to start early so by 7:30 I am sure to be teaching someone math or spelling.  Leo actually enjoys schooling time as we walks around the table holding on and pulling papers, books and pencils off.  He thinks it is great fun to grab school papers and tear them up.  

This week we also needed to make time for Cupcake Wars as Amanda challenged Tyler and Jordan to a cupcake war.  She supervised the boys baking and then proceeded to bake her own cupcakes.  I totally forgot to get a picture of the finished product but I have been told a rematch has been scheduled for next week. 

 Jordan the Baker

 The Cupcake Queen!

The Taste Testers

Yesterday, cupcake wars just happened to be occurring as one of the therapists was here.  Thankfully she also has a lot of kids so was not bothered by the commotion in the kitchen.  In thinking out loud to her, I said- 10 years ago there is no way I would have let the kids make two different set of cupcakes in my kitchen without me supervising.  I must be getting old.  I think the reality is that I am realizing what is really important.  The sibling bonding that occurred between Amanda and her brothers was totally worth the cost of some chocolate icing on my cupboards.  To her credit, Amanda did do a great job cleaning everything up.  

We just so happened to have a surprise special guest with us for dinner last night.  I am hoping to find time to write about that visit- hopefully tomorrow. 

The difference a year can make

BEFORE 

September, 2011
16 months old

Exactly 1 Year Later 

September, 2012
28 months old

Birthdays and Pirates

Yesterday was Jordan's 9th Birthday. 

Emma, the dog, is never one to be left out when food is involved.

Jordan is a great kid.  He just has the greatest attitude.  He is easy going, has a great sense of humor, go with the flow kind of kid.  He was the first one to love on Leo and is always looking out for him.  He asks at least once a month- "when are we going to adopt again?"  He loves kids and has a huge heart for those in need.  I know God has great things in store for him.  Jordan also loves food and really enjoyed his breakfast in bed. 

Today is Pirate Day.

We were spontaneous, dressed Ben and Jonathan

like pirates and headed to Krispy Kreme. 

Free donuts just taste better!

Leo was not too sure about this pirate business. 

Today was a good day for Leo.

He stacked 3 blocks (this is huge), 

kept his glasses on the majority of the day, and 

drank about 3/4 of an ounce.  It took him about 25 minutes

to drink it, but it is progress.

Terrific Two's

Summer was good for Leo!

He has made so much progress the last 3 months. He is not the same little boy that he was a year ago. We are constantly being reminded what it is like to have a two year old in the house. Leo is a man on the move. Into everything. Exploring. Learning. Growing.

We picked up his glasses today.  Keeping the glasses on his face

has been a full time job this afternoon.  We really think they 

make a difference in what he is seeing.  He just has this look

on his face when he is wearing them. 

We are also  making slow but steady progress in feeding.  

He is drinking about a half an ounce if we work with him.

It takes about a half an hour to drink that .5 ounce but his tolerance is growing.

He especially enjoys smoothies made by his sister, Amanda.

His latest trick- his version of standing on his head. 

His arms and legs are getting so strong.

We have come so far and yet we are reminded that we 

still have a long road ahead of us.  Leo is still non-verbal.  

He squeals, laughs, whines and yells, but no real sounds.

We are working on some sign language and I know he understands

some of what we are saying.

Sometimes, I just wish we knew what he was thinking!

Yee-hah!  Progress!

The above photos show Leo making some strides here.  Like, in that last picture, he is actually putting food in his mouth.  THAT'S A HUGE DEAL.

Then the first picture is a little bit of his birth certificate which arrived in the mail today.   Hooray!  That's been on the way for months now.  We can now apply for a social security number for him and then begin officially changing his name on important documents like health insurance and doctors.

Leo also got a new walker today (the shiny yellow one pictured above.)  We specifically prayed for that as a family last night, and (at last) here it is.  We had been borrowing one from our therapist but it was a bit big for him.

These are, of course, all good things for Leo.  But I was reminded recently of just how faithful God is to answer prayer in general.  My morning devotions had brought me to John 14 where I read:

"And whatsoever ye shall ask in my name, that will I do, that the Father may be glorified in the Son."

Really?  I thought to myself?  I believe this in theory... but how often do I fail to give my concerns over to God in prayer?

I have a lot of growing to do there, I am sure.

Still, a shot-gun smattering of answered prayers sure is encouraging.

--Jeremy

Always Cheering

Leo last June, 2011 at 13 months old

I love our early intervention therapist.  They are on our side.  They want the best for Leo.  They recognize how far he has come in the last year. 

Today was Leo's one year meeting.  The therapists all had to share how Leo has progressed during the last year and what level he is at developmentally now.  Bottom line Leo is at about a 9 month level for a lot of areas and even lower for feeding, oral and communication. 

Leo is two years old.  This could be a depressing situation, but the therapists didn't even give me opportunity to go there.  They all kept pointing out how far he has come.  How a year ago he just laid there and did nothing.  Could not sit up, could not lift up his head, the list could go on and on. 

I just picked out a walker for him with our PT's help.  He is moving.  He is engaging.  He has a spark he didn't have a year ago.  Yes, we have a long way to go, but I am thankful that God has surrounded us with an awesome group of therapists to cheer us on. 

 Leo and Emma (the dog) are now working together.

Leo pulled the spatula from the dishwasher and 

Emma enjoyed licking off the remnants of our dinner. 

A Day In The Life Of A Kind Of Crazy

Yesterday we lived the title of our blog.  Our day began with church and me unexpectedly serving in the nursery.  I realized just how loved and well taken care of Leo is by our nursery staff.  At first they didn't realize I was his mom and so it was cool to sit back and watch them interact and play ball with him.  They look out for him realizing he may need some extra "protecting".

After church, we headed home for a quick lunch and packing up of 6 coolers and lots of bags.  We then headed off to the pool where an awesome staff helped us unload the vans and get everything to our picnic area.  We set up and were ready to celebrate Jonathan's 6th birthday with family and friends.  Everyone had a great time and Jonathan deemed it "his best birthday ever!"  It really was a good time and also a great time for me to catch up with some of my mom friends. 




We arrived home from the pool at exactly 6:47, my friend Gwen text me as I was pulling in the driveway, and then the craziness really unfolded.  We oversaw 5 boys getting baths, ordered pizza, picked up pizza, unpacked some coolers, put some party stuff away, repacked a cooler, Jeremy threw on real clothes, I just put a shirt over my bathing suit, and were back in the care at exactly 7:35 heading to pick up Aunt Suzy and Andrew.  As we were handing out pizza in the van for the kids to eat as we drove, Jeremy looked at me and said- a kind of crazy! 

I love this picture.  Leo is slowly finding his voice and is now "yelling". 

We picked up Aunt Suzy and Andrew and headed to fireworks.  We had gone to fireworks on the 4th of July only to find out it was a typo in the paper and they weren't on the 4th they were going to be on the 7th- WHAT!!!  Apparently, we weren't the only ones who made this mistake as probably 50 other cars pulled into the parking lot looking for the fireworks.  We went and got ice cream instead.  We were all prepared to go see the fireworks on Saturday night but they were cancelled due to a storm.  So it became a family mission to finally see fireworks last night.  We were glad we went even though we were all exhausted.

We arrived home after ten.  The kids fell into bed and just as I laid down to go to sleep Leo's feeding pump began its familiar dose done beep.  Thankfully Jeremy was heading up the stairs and came to my rescue and turned it off for me. 

I wouldn't trade our craziness for anything!