Coffee Mug SWAP!

 

Because I love coffee. And coffee mugs. And fun exchanges. And getting real, honest to goodness mail….. I decided it would be plain ole fun to host a coffee mug swap. Doesn’t that sound fun? Yes! Ok let’s do it!

Here is what you need to do:

~ Send an email with the title “MUG SWAP” to onourdoorframes@yahoo.com

~ Include the following information:

* Your name

* Your mailing address

* Your blog address AND/OR a few things about yourself that will help your match get to know you (style, favorites, hobbies, etc)

 

 

THEN WHAT!?!?!?

1) SHARE this Mug Swap! The more participants we have the more fun this will be!

2) On or before November 5th you will receive and email from me with all the information about the person you are to buy for.  If you have not received an email from me by November 5th (and you have checked your spam folders) shoot me an email.

3) Thoughtfully choose a mug based on the information you received about the receiver.

4) Mail your mug by November 15th!

5) Excitedly wait to receive your own mug in the mail! When you get your mug be sure to share with us on Instagram and/or twitter by using the hashtag #mugswag2013

*****PRETTY PRETTY PLEASE only sign up if you are committing to send a mug. We want everyone who signs up to give and receive one. Thank you********

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Other information:

~ How much should I spend? I would suggest anywhere between $0 and $20. Do NOT feel like you have to spend a ton of money to join in! Target, Etsy, Goodwill….the sky is the limit! Thoughtfulness is much more important than cost!!!

~ Will I be receiving a mug from the same person I am sending one? Nope. Isn’t this fun!? You will not know who you receive a mug from until it arrives.

~ Can I include anything in my package besides a mug? Yes, if you’d like…but keep it simple. A few tea bags, a small stationary set…you get the idea. Also, if you’d like you can include your blog address or a little about yourself.

~ What do I do if I sent a mug and never received one? Please email me at Onourdoorframes@yahoo.com

~Other questions? Email me at onourdoorframes@yahoo.com

OK, that’s it! Don’t forget to use the hashtag #mugswag2013 when sharing about the swap! HAVE FUN!!!

On days when you just want things to be {normal}.

I am openly confessing that sometimes I {my flesh} just want things to be normal. I don’t even know what that means….. Normal to what standard? No clue. Maybe I mean easy? But do I really {really} want that? Would I rather things be normal or would I rather choose to allow The Lord to use my pain/struggle/heartache to slowly draw me closer to Him?

There isn’t really a middle ground.

“Enter by the narrow gate. For the gate is wide and the way is easy that leads to destruction, and those who enter by it are many. ~ Matthew 7:13 {emphasis mine}

There are days that I wake up and pray that God has chosen to heal my son. That the word Duchenne did not exist. That planning for the future didn’t include door widths and wheelchairs.

Days that I hug my three littles and try to forget that one day one of them won’t be able to lift his arms up to hug me back.

Days that I don’t want to get out of bed. {And it is hard to be transparent enough to say these things}

Days that encouraging words are clouded by pain and the closing in of walls.

…and I allow myself to sit in those moments sometimes because this is my life. It is ok if I’m weak. Of course, I’m weak. It’s in the times that I allow myself to really feel  the depths of pain I’m experiencing {as opposed to plastering on the smile and pushing through} that God meets me there. He picks me up and whispers to me that I am not walking this journey alone.

If I deny my pain and pretend everything is all ok then I sacrifice the blessing of God molding me into His image.

In as much as I’d like to think that I really want normal…. I don’t . I want to trust in an awe inspiring God, who in my deepest hurt takes my burdens and transforms them into a beautiful story that is exceedingly and abundantly more than I could ever imagine!

Normal is overrated anyway….

the beginning of a beautiful story

This week we traveled up to Ohio for Maddox to have his first visits with our new neurologist, Dr. Wong* at Cincinnati* Children’s. If you are wondering why in the world we chose a neurologist so far from home then let me be the first to tell you. Simply…because she is who we consider to be the best at what she does. Every.Single.Day neurologists tell parents who have just gotten a Duchenne diagnosis that there just isn’t anything they can do and to go home and love them. Sound crazy? Yeah..it pretty much happened to me so I can vouch for the fact. First of all there ARE things we can do and especially after today I feel more empowered than  ever to care for my son and advocate for his needs. #mamabearhere

So, today was day one of two days of appointments here in Cincy. We first met with the physical therapist who checked M’s range of motion. She showed us how to do the stretches he needs every single night in order to keep him loose and so he doesn’t lose his range of motion so quickly. He will lose it but at least this will give us more time. We got the order to have his AFO (leg braces) made. He will wear these every night. Basically this keeps his ankle pointed up at a 90* angle while he sleeps. Again, with the goal of keeping that range of motion. That’s our biggest goal right now because as he starts losing it he can’t keep balance, and if he can’t balance then he loses the ability to walk as his muscles weaken. Overall she said he really is doing well and we were so thankful he tolerated all the pushing and measuring with out so much as a whimper.

Next, we encountered a little God wink when we met Dr. Lee* who is interning with Dr. Wong*. Get this…she is from Korea and came here to study under Dr. Wong* so that she can go back to Korea and start a multidisciplinary clinic just like the one at CC. She totally gave Maddox the VIP treatment. She tried her best to engage Maddox by talking to him in Korean ; ) Bless him he had no clue what she was saying but I think he was intrigued. I wonder what was going through his little mind?? She even let him watch Pororo (Korean cartoon) on her cell phone.

Anyway, Dr. Wong* did her exam and then timed Maddox getting up from the floor, climbing stairs, and running (his favorite). She seemed to overall impressed with his ability which was encouraging to us! We talked about our treatment plan and giving him a few more months before we start on steroids. That will give him a chance to grow a bit more because the steroids tend to stunt growth and he is so tiny as it is (less than 10 percentile). A huge answered prayer and a big weight was lifted off of my shoulder when she said that we did not have to do a muscle biopsy this visit. It’s just a really invasive procedure and painful. Praise God he spared Maddox on that one!

We covered an in depth look at the error in his dystrophin gene. I mentioned before he has a point mutation in exon 36. We learned more about what trials are in the pipeline that will be able to help him should they receive FDA approval. Overall we covered way more information than you would ever care to hear here and she spent over THREE hours with us answering all of our questions. And we had quite the list….

We absolutely know that coming here was the right decision for our family. I would encourage anyone whose child was recently diagnosed with Duchenne to do your research and don’t let anyone tell you that there is nothing you can do. There may not be a cure and this may be a terrible, awful, no good disease but there is ALWAYS hope!

Tomorrow Maddox will have his EKG and echocardiogram. Originally we were told that because of his age they would put him to sleep for the procedures. However, because of how well-behaved he was today she said she saw no need for that. Y’all he was a ROCK STAR! Another praise for that!!! We will also meet with the cardiologist on the team to discuss typical progression of the heart in Duchenne. Every step of the way we have received confirmation that bringing Maddox here was the right decision and are so grateful that God opened doors for us to be seen here and under the care of the best doctors in the country for this disease.

I held it together all day except when we talked about the level of care for Duchenne boys in Korea…and I just had this moment where God whispered to me, “for such a time as this..” I know that if he was diagnosed when he was in Korea it is so likely that my son would have been institutionalized. And I broke down. God is good. Do you hear me?? I cannot even wrap my mind around what He has done for our family. Trust me when I tell you that when God calls you to something He is going to prepare you for it! If you asked me five years ago if we would ever adopt I would have laughed. 3 years ago… if we would ever be able to raise a child with a terminal illness? I would have said that I wasn’t strong enough. And yet here in the midst of this crazy storm I look at my son and I KNOW that I KNOW that I KNOW that he is mine and that God chose us for this battle. Ironically, I would still say that I’m not strong enough. But you know what? I know  the ONE who goes before me and in my weakness He is strong. My son has Duchenne Muscular Dystrophy. He may lose the ability to walk, to use his hands, to breathe on his own but GOD is still good and no matter what we will praise Him through this journey. It’s going to be a beautiful story.

Counting it all as JOY

“The heart of man plans his way, but the Lord establishes his steps.”

Proverbs 16:9 ESV

 

The days continue to march on with words left unsaid here. Ultimately this was my little space to share and document our crazy, little life. I guess the problem in that is that a crazy little life rarely slows down long enough to be documented.  I adore looking back on our journey though and each time I visit I find myself sad that I haven’t take the time to truly show who we are here. For myself really…but for these 3 little ones also.

We are entering a new “time” in our journey. One that could make us scared to step out on the water for fear of the unknown.

But our hope is found in a God who doesn’t fail us.

 A savior who promises to work all things for good for those who love Him.

  And so we step….

” And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.”

Romans 5:5

It is through that hope in HIM that we find strength and endurance for the road He has set before us.

It really is a beautiful road.

Full of everyday joys.

Of watching our littles grow.

Celebrating each birthday and new accomplishment.

Reminding each other that time passes quickly.

Spurring. Cheering. Teaching. Discipling.

In all honesty, we have no idea what we are doing.

But we know enough to seek knowledge from our Savior who promises to guide us.

But if any of you lacks wisdom, let him ask of God,

who gives to all men generously and without reproach, and it will be given to him.

James 1:5

And we CHOOSE JOY through everything

{ the tears, the laughter, the pain }

Joy doesn’t come naturally during the difficult but no matter what the world tells you it IS a choice.

We choose to count it all as JOY!

An Answer

A little update on our family.  Since March we have been waiting for a diagnosis of our sweet Maddox who had elevated liver enzymes during his routine blood work when he came home from Korea. A follow-up check 6 months later was also elevated. Several rounds of blood work later and 2 DNA tests (one taking 3 weeks and one taking 7 weeks) we now know that he has a form of muscular dystrophy called Duchenne (DMD).

This is caused by an error in his dystrophin gene in his DNA. Dystrophin is like the glue that holds your muscles together. In the dystrophin gene there are 79 exons. For explanation sake, let’s pretend that the gene is a paragraph. Each of the 79 exons are words in that paragraph. Maddox has what is called a point mutation in exon 36. So, basically in the 36th word of his paragraph he is missing a letter (or a letter has been added to the word). Isn’t it amazing how one tiny little letter can change your life?

 

{Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures. Duchenne results in progressive loss of strength.

Boys with Duchenne may develop later than children of the same age—for example, speaking, sitting up, and walking. Cardiac problems eventually occur with Duchenne and may start early or during the teenage years. Typically, boys with Duchenne lose their ability to walk between the ages of ten and fourteen. By their late teens, young men lose the strength in their upper bodies, including the ability to move their arms. Also during their teenage years, young men with Duchenne usually need help with breathing at night. Over time, their breathing or respiratory systems weaken, and they require constant support.}

 

At this point in time, there is no cure or treatment that can stop the progression but there are many treatments in clinical trials that the Duchenne community is very hopeful about.

On September 3rd we will be traveling to *Cincinnati Children’s to meet our new neurologist and will also be seeing a team of cardiologists, pulmonologists, physical therapists, etc who will discuss M’s diagnosis with us and come up with a plan of treatment. He will have a possible biopsy at this time also.

 

All that to say strangely, we are relieved to have an answer and are prepared to fight this battle with our sweet boy! We are thankful for a God who loves and cares for him even more than we do and we trust in His plan for our son’s life. It’s going to be a beautiful story.

 

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A Circle Complete

The newest member of our family celebrated his 2nd birthday today! I can’t wait to write the full post but just wanted to upload a few photos in case a certain omma happened to drop by.

And just because I like to be all squishy and sentimental I wanted to share with you what a difference a year has made in our family. Last year I wrote this about celebrating our sweet boy’s very 1st birthday while he was still in Korea. I posted this photo of our family:

And this year we decided to recreate it with this little twist called a real life Maddox! : )

The circle is complete and our sweet Maddox is here forever! Praise God!

 

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Dawson Pierce turns 4!

4 years
They flew by in the blink of an eye
a drop of a hat
and lots of other idioms that mean really quickly

Our world changed so much the day our Dawson Pierce was born because I was opened up to the special love that little boys have for their mama. If you aren’t the mother to a son I pray you get to experience that kind of love for yourself one day because you just can’t really describe it. Boy mamas, am I right?!?

These past 4 years have been incredible. Watching Dawson grow into the little person that he is has been one of the biggest joys of my life. I’m so proud of him for who he is becoming and how much he has grown up this past year. It’s a few days past his birthday now and as usual I’m behind on this post. Just this morning he was looking through our wedding album and the album of his big sister’s first year and wanted to know where his album was. Well, about that bud.. Mommy dropped the ball. It happens you know. Times keeps going by so FAST.  I could do the guilty mom thing but you know what? I’m not. This morning I had this revelation that I may not be the best at documenting our lives but I’m ok with that because in the end what matters the most aren’t the pictures. What matters most are the moments.

The moments when my sweet, sleepy faced boy climbs into bed beside me at 6 am just to snuggle. He will always runs his fingers along my hand and fall back to sleep just for a few minutes. It must be close to what heaven is like.

The moments when he has learned something brand new and his face lights up so bright that he is beaming while I cheer him on.

The moments after he has played outside for hours and rushes through the door sweaty and covered in grass stains and I can’t help but pick him and take a big, deep whiff of that puppy smell. You boy moms know the one I mean!

The moments when we are curled up on the couch just being silly and he bursts out into the biggest belly laughs that I wish I could bottle up and sell. The world would be a happier place.

The moment when you see your baby boy become a big brother and not only take on the role but embrace it fully. When he teaches and encourages his new little buddy and your heart can’t help but melt.

These moments can’t be captured in a photo but I’ll remember every last detail of them. So, I may not ever be the mom with a shelf full of scrapbooks or even simple photo albums but I’m ok with that! My kids will be ok with the moments I’m right in the action with them instead of just an onlooker with the camera, right? ; )

And before I forget I wanted to share some of my favorite things about Dawson right now~

– When he is telling you a story about something that happened in the past it always, always happened on Wednesday. In fact, when he is talking about something that will happen in the future it will be on Wednesday. Basically, if he is referring to anytime that is not in the present it will be Wednesday.

– He has the best sense of humor! The boy is going to be the class clown. I feel it in my bones. He is already witty and picks up on jokes that I think are going to fly right over his head.

– He is very particular about his room and toys. Everything has a place and he cannot go to sleep without making sure things are tidy. No shoving things under the bed for this guy!

-He loves to share. No, I’m not kidding. If he is given a snack or treat he always asks for one for Reagan (and more recently for Maddox too). If you ask him for a bite of something he is eating he happily obliges.

-He sleeps with a blue minky dot blanket that he calls “night night”.

– He LOVES super heroes,transformers, swimming, macaroni and cheese, chocolate milk, going to the jungle (which is of course the zoo), Scooby Doo, going to the beach, playing in his sandbox, practicing writing his name…I could go on!

We are blessed everyday by our sweet guy! Happy Birthday, Dawson Pierce!!  I can’t wait to see what year 4 brings us!!

 

****I could have searched for a sweet little picture of our guy all dressed up and…clean, but this is our Dawson the way we know him best! Silly, covered in dirt with some food smudged on his face…and we love every inch of him!*******

~ A Month in our Arms ~

On Friday we reached a really fun milestone. It was one month ago that our sweet Maddox was 1st placed in our arms. Is that even possible? It’s true. And as of Saturday we have been home (and a family of 5) for 3 whole weeks.

Last night we were headed home from a family dinner and Dawson said, “Mama, when is Maddox going back to Korea?” I flipped my rear view mirror down so I could look him in the eyes and I said, “Bud, Maddox isn’t going back to Korea…unless it’s for a vacation. He is in our family now. A part of our team.” I wasn’t really sure what his response would be but his face lit up and he let out a huge sigh and said, “Oh good! I’m so glad he is my brother now and I don’t ever want him to not be here with us!”  {Insert heart melting}

The relationship I prayed that these two brothers would have doesn’t hold a candle to the bonds they are forming right before me. Anything Dawson does Maddox tries to mimic. Dawson jumps on the couch. Maddox jumps on the couch. Dawson plays cars in his room. Maddox plays cars with Dawson in his room. I will be honest and say that I thought that Dawson would have a hard time not being the “baby” anymore but boy was I wrong! He loves his little brother and Maddox thinks that he has hung the moon. It’s pretty awesome!

We get asked a lot if Maddox is speaking English. He is not…yet. But his receptive speech is incredible. He now knows to head to the bathroom when we say it’s bath time, he goes to his highchair when we say it’s time to eat, his changing table when I say he needs a diaper change. He waves when someone says “Bye Bye”. He is responding to Maddox now (although we still call him Jeong Hwan a lot), He can point to his nose when we ask, and he closes his eyes when I ask where his eyes are. But my favorite one of all is if we say “kiss” he leans over and puckers up. I may die from the cuteness of this very thing one day. It seems like everyday he is understanding us more. He’s such a smart little guy!

On top of all of that we have been working on a few signs to help cut down on some of the frustration he is having trying to communicate with us. He can now sign “more” when he wants more to eat. It’s not the exact sign but he knows what it means and we respond when he does it and that’s all that matters at this point. We will slowly introduce new signs as he learns each one. And by far the biggest help to our communication is he will now point. I’m pretty sure he was pointing for his needs in Korea but for some reason he would not do this with us. It has taken lots of hard work but our boy can now point!

The best thing of all is when Maddox learns something new that we’ve been working on and the whole family erupts in cheers. He has got some serious support from his siblings! They want him to succeed and that makes me so happy! I always tell the kids that our family is a team and that we support and encourage one another no matter what. It feels good to see them live this out!

We had a lot of first this past week.  Maddox got to experiance Chuck E. Cheese for the first time and I think you can tell from the picture at the top what he thought of it! I will say that as much as he liked to sit on the rides he did NOT want them to move! We had our very 1st Sonic Happy Hour trip for 1/2 price slushes.  Maddox is a fan of the strawberry one…just like his big brother. We went out to the library. His favorite part was the water fountain.  But, by far my favorite first of the week was our first time at church as a family of 5! I won’t lie and say that I wasn’t VERY nervous but Maddox was a rock star! He played with his new little toddler buddies in the nursery and even did a little craft.

We are so in love with this kid and how he just fits right in with our crazy crew. I could go on and on but I’ll leave you with some pictures from the week.

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Two Weeks Home

There are times when I glance in my rear view mirror and see his almond shaped eyes that I’m completely overcome with emotion at the fact that he is really is home. Then there are times that it feels like he has been with us forever. To say that we have come far in the past two weeks would be an understatement. We have come FAR!  Looking back on those first few days in Seoul I can see now what a sad boy we had…even in pictures he doesn’t look like the bubbly, sweet Maddox that runs up and down the hallways here now. It’s amazing to see his progression and we are so happy to know that he is starting to feel like this is home.

We had a small setback this week when David was hospitalized on Monday for colitis. Apparently, the one meal we have eaten out since we have been home contained some bad sushi…that only David ate (Praise God). So, for 4 days we had a very sick daddy. I’m so thankful for friends and family that pitched in to help this crazy mama. The big kids had VBS and a sleepover with my parents while Maddox and I did a lot of camping out at the hospital. It wasn’t ideal but we made it work and thankfully he was discharged on Thursday afternoon.

Other than that, we have been doing really well. In honor of being home two weeks I wanted to share a few things about our new little guy!

~ He LOVES bath time….like water splashing everywhere, crying when it’s time to get out kind of love!

~ He eats everything. The only food he hasn’t gobbled right up is grapes and diced pears. He holds food in his cheeks like a squirrel…control issues much? ; )

~ He is sleeping like a champ. Normally he will go down around 8 pm and wake up around 7 am. Actually getting him to get to sleep can sometimes be a challenge but hey it’s only been two weeks, right?

~When we say “bye bye” he waves.

~ We play this game where we point to his nose and say “Jeong-hwan’s nose” and then point to my nose and say “umma’s nose”. Finally this week he will play back and point to his own nose when we say it. So fun to watch him soak up language and learn things.

~ Maddox and Dawson are the cutest little pair and watching them grow into brothers has been joy to my heart. Today I walked into the hall just in time to watch Maddox reach out to Dawson and give him an unsolicited hug. I may have shed a tear.

Life is good and we praise God for His goodness!

On Friday we spent the afternoon at my parents house to celebrate my dad’s birthday. It was Maddox’s first time out there and he had a blast hanging out by the pool. While we were in Korea my dad had been working on some swimming skills with the big kids and they were very eager to show off their new moves. We had a fun afternoon! Here are a few pictures:

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One Week Home

This very moment one week ago we were walking off an airplane into our hometown with our sweet blessing. We were exhausted and hungry but seeing the flashes going off through the airport windows gave us one last burst of energy. We were greeted with cheers  by our closest friends, family, and neighbors and 1 minute later I wrapped my arms around my two big kids and squeezed them so hard I took their breath away. At that moment we became a family of 5. As I sit her one week later I couldn’t be filled with more joy. The boys are splashing in a bubble bath and my sweet girl is curled up beside me. Life is so good!

At some point late in the week things started to fall into place. Maddox was sleeping through the night. David and I felt like we were alive again. We were seeing so many more laughs and giggles than tears. The big kids fell into a comfortable spot in their roles and everyone was getting along. I know it’s a honeymoon phase and if I had a sponge I would soak it up and bottle it because it is PRICELESS!

Last night Maddox slept in his bed from 8pm to 8:30 am and when I opened his door this morning he gave me the biggest smile. He was finally expecting to see me instead of someone else. It was a big moment.

Every day we see more and more of his sweet personality. Here are a few pictures from our evening in the backyard:

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