snuggling with my blanket or what is God asking you to do?

Most days I can pretend all is well. That I have 6 healthy children and life is going according to plan. The problem is that packages like the ones that arrived today force me to face reality. The reality that I am a mom, a mom of a special needs little boy. Today Leo's medical supplies for the month arrived. 6 cases of special formula, lots of syringes, microlipids, and the list goes on. There was an extra box this order. A box that actually made me smile until I did a little research. This box contained Christmas gifts from the supply company for Leo. A homemade hat, a fisher price toy and a homemade blanket. The blanket had a Project Linus label sewed into it. I googled Project Linus. It is a wonderful organization.

From their website- “As Charles Schulz’s Linus character from the PEANUTS® comic strip was comforted by his blanket, Project Linus strives to do the same and more for children who are seriously ill, traumatized, or otherwise in need.”

Leo received a project Linus blanket. I started to ask myself - “why?” Is he seriously ill, traumatized, or otherwise in need?

I was reminded of the fact that I push to the back of my mind on a daily basis- Leo has Wolf-Hirschhorn syndrome. By virtue of having WHS, Leo is considered “seriously ill” by some.

Things we were told before Leo came to live with us.

It has been estimated that approximately 35% of individuals who have WHS die within the first two years of life. Universally, children with WHS have severe or profound developmental retardation, however, there are many affected individuals who are able to walk and some that are able to talk in short sentences. It is evident that many patients seem to proceed farther than was previously thought possible. You can read more about WHS here http://www.wolfhirschhorn.org/

So why am I surprised that Leo received a blanket from Project Linus?

The reality is that I can't think about what tomorrow holds for Leo. Jeremy and I accept the fact that Leo will most likely live with us for the rest of our lives. Retirement without kids is most likely not in our future. And that is OK.

I can't focus on Leo's prognosis. I can only focus on what I have to do today. My day just looks different than most. I homeschool, I clean (most days), I cook, I get kids to their activities, but then I also administer feeds via a tube to Leo, I change his dressing, I clean,fill and run his feeding pump at least 6 times a day, I administer medicine, I am constantly going to specialists, I work with him and his therapists with the goal of helping him reach his potential.

I can't complain. We chose this. We said yes to Leo. Most moms of special needs kids didn't get a choice. I did. We could have turned down his file and no one would have thought any less of us.

Here's the thing- It isn't about us. It's about a little boy who needed a family, who happens to have a rare genetic syndrome. We are blessed as a family. Yes, Leo has changed the dynamics of our family. Yes, his special needs can complicate plans at times. But it isn't about me having an easy life. It isn't about us some day retiring to an island without kids. It's about doing what God has called us to do. It's about sometimes choosing to do the hard thing because you know it is the right thing to do. Life with Leo is hard on so many levels, but thankfully we aren't on this journey alone and as the poem goes, when there is only one set of footprints in the sand- It is then that God is carrying us.

So tonight, I might just snuggle up with the Project Linus blanket and thank God for allowing me to be mom to 6 wonderful children who are all special to me.

What is God asking you to do that is hard? We are not special. We are not super godly. God asked us to adopt Leo. What is God asking you to do that is hard? He will carry you when you need to be carried and who knows He might even send you your very own “Linus blanket” to comfort you when you obey and life gets hard.

Cutest Boy Named Leo

Isn't he just the cutest little boy?

He is so happy to not have a tube dangling from his nose! Who wouldn't!

We are back to working on eating and drinking from a cup. Baby steps. Goal- eating by mouth!

What a handsome guy!

Looking Good

Yes, it is 5:30 as I type this but I actually slept last night. They didn't have Leo hooked up to the monitors so I didn't hear beep, beep, beep all night long. Leo also has a quiet roommate.

It took him 3 full days, but Leo finally got his IV off. Quite the accomplishment and one he is very proud of. He has a reputation for getting them off and they practically had it ducked tape to him. He is lucky his favorite nurse isn't in today or she would have words with him. I believe her exact words were, "Leo is a worthy opponent!" Apparently, Leo may have won the battle!

Full feeds today. Hopefully starting with the 9:00 AM feed. If he does well then we are out of here!

In other God news. Leo's 4th roommate is a little girl, who was adopted from Africa. How cool is that? Only God could have orchestrated placing these 2 adopted little ones in the same hospital room. She should also be discharged today. Praying, we go first as I really have no desire to meet a 5th roommate!

Getting Around

Like the wheels? The nurse found us this cool almost like a Kohl's shopping cart to go for a walk in! Leo enjoyed walking the halls and seeing people other then me and the 4 walls.

After our walk, Leo fell fast asleep.

He is doing very well. Last night lots of beeps were heard as he kept setting off his monitors. They finally called the doctor and got permission to take him off the monitors and so no more beeps for now. Today they increased his feeds to 2/3's and so far so good. We skyped again with the kids at home which the boys especially enjoyed.

Being here has reminded me how blessed we are. Our children are healthy, yes Leo has multiple medical issues but he is healthy. We have seen so many kids who are a lot sicker then Leo and who have been here a long time with no discharge date in sight. I am also so thankful that I am able to be here with Leo around the clock. It broke heart yesterday to see a baby only a couple of months old sitting in a seat in the nurses station. His mom has to work and so he is here by himself with just the nurses to look after him and love on him. I discovered that Leo is in the minority of having a parent with him around the clock. We are so thankful for Mom-mom for basically moving in and taking care of life on the home front. She is doing an awesome job keeping things "normal" for the kids. We know this is hard on the other kids and so we have worked to not uproot their lives this week. Jeremy has been home to tuck them in, to take them to chess club and even to help with school work.

The end is in sight. Leo should be discharged late tomorrow. Tomorrow they will increase his feeds to the normal amount. They will check his blood sugar after 2 of the feeds and if he is tolerating everything, they should kick us out!

This weekend Amanda is performing with the Bucks County Community Orchestra. She plays the violin in their Concertino Division. We are hoping all of us can go to at least her portion of the concert. She has really excelled in her violin playing this year and we are so proud of her!

God is Answering!

We are in a room. The plan was once we were moved to a room, I would take a nap before Jeremy left, but apparently someone stole the sleep sofa from the room and it can't be found. So no nap for now- kinda makes me laugh as the nursing staff is completely perplexed by who took the sleep sofa- it is heavy! Leo also has a teenage boy for a roommate. Should be an interesting night.

But I digress to what you really want to know. Thank you so much for praying. God heard and answered! Leo did great. It has been a LONG day, but God is good. Surgery began about 7:30 and we got to go see him about noon. Each surgeon was please with how his part went. They were all alerted to Leo's past breathing problems and took special care with him and slowly woke him up. He has a little oxygen but not enough to cause concern. We will definitely be here till at least Thursday. Thank you all for praying and please continue....

Time to Pray

Tomorrow we need to be at CHOP by 6:00 AM. Please pray for the 3 surgeons involved in Leo's surgery. Please pray that God will guide their hands and give them the wisdom they need. Please pray specifically for Leo as he comes out of anesthesia. The last 2 times Leo had surgery, he had a lot of difficulty breathing after anesthesia. Please pray specifically that he will have no breathing difficulties after this surgery. We really appreciate all your prayers.

Legally Clear

Just got word- we are legally cleared for surgery. Yes, you read that correctly. It has been quite the ordeal to get Little Man, Leo- legally clear for surgery. The reason for the ordeal is that technically our adoption agency has guardianship until the adoption is final. They have signed papers giving us permission to seek medical care and sign any medical forms. Apparently, the legal department has scrutinized this case making sure all i's are dotted and t's crossed. We also had some confusion because 3 departments are involved in this surgery and 2 were talking to legal and the agency. No one realized they were talking about the same little boy- kinda humorous if you ask me!

We are also cleared medically-as I had a phone interview with the anesthesia department yesterday. The frustrating part- nothing, no nothing was documented about the breathing difficulties Leo had after surgery in August. Difficulties that landed us in Intensive Care. The very nice women made some notes and we will also be talking with the anesthesia doctor before surgery. Now- we need to keep little man healthy till Monday morning!

Please begin now praying for Leo (and us) as his surgery is scheduled for Monday and it will take 3.5 hours to do all 4 procedures. 3.5 hours is a LONG time to be under having doctors work on you! We will be in the hospital at least 3 days.

We also had a visit with Leo's birthmom this week. I was hoping this visit would be easier, but it wasn't. I left emotionally drained. Good-bye is the hardest. She was very happy to see how much Leo has progressed and had fun playing with him as he rolled all over the place. I am still processing the visit. The bottom line- Leo is one loved little boy!



In the midst of our new "normal", schoolwork is still happening but the greater lessons have been learned just living life!

2 years ago

Photo and video editing at www.OneTrueMedia.com
If you get the blog via email you need to go to the blog to see the video :)

It was two years ago today that Jonathan stole our hearts!
This is my favorite video of our time in China.
He has lost his baby look
and is now a big boy, my big boy!

M&M Uno

We had a lot of fun this evening playing M&M Uno. If you find yourself looking for a way to keep a couple of children entertained, let me suggest this fun game. It's a creation of our very own, and it works like this:

GAME SET UP

1. Before the game can begin, everyone must WASH THEIR HANDS.
   
   
2. Each player gets a dixie cup with 10 to 15 M&M candies in it. It is important that each player has the same number of candies in his/her cup.
   
   
3. A bowl is set in the middle of the table. This is the candy bowl.
   
   
4. Deal out the Uno cards like you would for a normal game.

GAME RULES

Play a game of Uno according to the standard rules of the game. Four additional rules govern the distribution of the M&M candies.

1. Whenever you are required to draw a card from the Uno deck, you must place one of your candies in the candy bowl.
   
   
2. Whenever you change the color of the top Uno card, you win all the candies in the candy bowl.
   
   
3. If you win the Uno game (that is, you play your last card) you win all the candies in the candy bowl.
   
   
4. If you run out of candies in your dixie cup, you lose. Just set your cards down and stop playing.
   

Frequently Asked Questions

1. Can I eat my candies now? You sure can. You don't need to wait to the end of the game to eat some (or all) of you M&Ms. But, of course, if your dixie cup is empty, you lose and you are out of the game.
   
   
2. If an opponent makes me draw four (or 2) cards, do I have to give away one of my candies? Yes. One of your candies goes in the bowl regardless of how many cards you were made to draw.
   
   
3. If I change the color by playing a wild card, do I get all the candies in the bowl? Yes.
   
   
4. If I can't play because I can't match the top card, do I have to put my candy in the bowl? Yes. You have to draw a card and put a candy in the bowl.
   
   
5. Hey, I drew a card, played it, and changed the color being lead. Do I get all the candies in the bowl? Even the one I just put in? Yes. You changed the color. You get all the candies in the bowl.
   
   
6. I changed the color, but the candy bowl was empty. Do I get anything? Nope. Sorry.
   
   
7. I played a skip card. Does the person being skipped need to put a candy in the bowl? No. They just get skipped. That's bad enough.
   

Give it a try the next chance you get. It's fun!

Why Was This Child Born Blind?

Why Was This Child Born Blind?
By John Piper. © Desiring God. Website: desiringGod.orga

This is probably the only sermon I have ever heard that talks directly about children with disabilities in such a direct way. It is a must to listen to. I love the line where John Piper says- "If you want to be one of the most remarkable kinds of human beings on the planet—a Jesus kind—see people with disabilities. See them. And move toward them. God will show you what to say."

Please take the time to listen to this sermon. It will challenge you to look at suffering in a whole new light.

Today Leo and I spent the morning with the neurologist. It went very well. Will update more on that later. Time to put little man to bed! I think he is done playing....

Will You?

This time 2 years ago, I was busy pulling everything together and packing for our journey to our amazing son Jonathan. Here he is on gotcha day eating french fries!

On November 9th, we are splurging and going out to dinner to the Chinese Buffet to celebrate Jonathan's Gotcha Day.

WOW! It doesn't seem possible that he has only been a part of our family for 2 short years. What seems even crazier is that he now is a big brother to Leo.

November is National Adoption Month. Both of our boys were considered hard to place. If you remember, we were matched with Jonathan before our paperwork was done because they couldn't find a family for him and his file was about to be returned to China. (meaning his chances for adoption would have dropped significantly) If you have ever seen Jonathan in action you know he is not hindered at all by his "special need". He is one of the most amazing people I have ever met. His personality, his determination, his spunk... and to think so many families turned down his file just because he was missing his leg.

Fast forward to April,2011, our paperwork was started, but not completed and again we receive a call about a little boy who desperately needs a family and Bethany has run out of options for him. Leo becomes part of our family. We are still waiting for the day when legally he becomes a Shafer. It's just a formality. Leo is a Shafer. After all, he looks just like his brother. His smile, his giggle, the light in his eye... yes there is more to Leo's care but we would and will do anything for this little guy. He deserves a mom and dad who love him. He deserves a mom and dad who will advocate for him and get him the best possible medical care. He deserves a family.

So, what about you? This November will you consider adopting? This November will you consider foster care? This November will you consider supporting a family in their journey to adopt? There are so many ways to care for the orphan. Will You?