A Unique Gift

It's been almost a year since I wrote a blog entitled "Defining Beauty."  At the time, my heart was full of emotion--wanting Jenna home instead of thousands of miles away in China and feeling concerned about her skin condition.

And now, nearly a year later, my heart is still full of emotion though the feelings are a little different since Jenna is home. 

I can now carry her in my arms, sing "Jesus Loves Me" with her at bedtime, and hear her giggle.

But I can't fix her skin.

And I can't fix society's definition of beauty.

Yet I can help Jenna learn about true beauty and a unique gift she can embrace.

Last weekend, we spent a fun-filled Memorial Day weekend with great friends at a lakehouse in Tennessee.  After a good night's sleep on Friday night, all seven kids were pumped and ready to get out on the lake.

 
Jenna obviously enjoyed her first boat ride...

but after five hours, she was one tired, little girl.

And after five hours of being in the heat, Jenna's skin had had enough.

My previous post was about the fact that Jenna doesn't sweat.  Thankfully the breeze from going 20+ miles an hour on the boat helped keep Jenna cool.  However, no sweating aside, the heat alone did a number on Jenna's skin.  And honestly, I haven't seen Jenna's skin look so poorly in the 6 months since she's been home.  Out of respect for Jenna, I'm not posting pictures here.  However, I did take a lot of up close shots of her skin to show her doctor when we see her in July.

I have to admit this was the first time since bringing our sweet girl home from China that I really felt concerned about the long term effects of ichthyosis.

The second time I felt this way occurred earlier this week while enjoying our first day at the pool.

Jenna's skin tolerated being in the water for a couple hours at the pool much better than sitting on a boat for several hours.  In fact, immersing Jenna's skin in water is GOOD for her, so I am very thankful she enjoys swimming.  However, I did notice a few adults at the pool look at her with suspicious eyes, probably wondering what was wrong with her skin.

Concern from a momma's heart.

Concern for how Jenna will feel about herself in a few years when she realizes her skin looks "different" from other people.

Concern for how Jenna will handle other people's looks or words that may be hurtful.

Concern for how I will handle all of this as her mother.

But I'm choosing to believe this...

Not only does ichthyosis cause Jenna to have thick skin in the physical sense, but my prayer is that she'll have thick skin in the emotional sense.

The American Heritage Dictionary defines "thick skinned" as "not easily offended;" or "largely unaffected by the needs and feelings of other people; insensitive."

I do NOT want Jenna to be insensitive.  In fact, I hope she'll be extra sensitive to others' needs and feelings because of what God has done in her life and the story He continues to write.

I DO want Jenna to have thick skin so she's "not be easily offended" but...

Knows that she is loved by Almighty God who created her and wants to know her in a personal way.

Knows that she is loved by her family that pursued her and wants her.

Knows that what other people think of her does not matter.

Knows that true beauty emanates from a person's heart.

Knows that true joy is found in relationships--first with God, then with people.

Knows that the skin condition she has is minor compared to the diseases some children deal with each and every day of their lives.

Knows that she is a gift to be treasured.

Now that's some thick AND wise AND beautiful skin...a unique gift indeed!

Thank you, God, for all that you are teaching me through the journey of motherhood.  I pray that all four of my children have "thick skin" so they are not easily offended by others but rather find their value in You.  Help me to model for them what truly matters in this life and teach them embrace the gifts You've given each of them.  AMEN.











 
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No Sweat

As a nurse I obviously have an interest in the human body that God created.  I’m amazed at how my heart constantly pumps blood through thousands of miles of blood vessels.  I’m amazed at how my bones and muscles work together to enable me to run mile after mile each day.  I’m amazed at how my brain can think about when each child needs taken to their various activities while writing a grocery list at the same time (though there are times multi-tasking can be a curse, ha!)

One function of the body that I’ve never really considered “amazing” is the ability to sweat.  I love to exercise and it feels good to be covered in sweat after a run, but I usually take it for granted.   Sweating isn’t just proof of hard physical effort through exercise or other activity.  Sweating is an essential function that helps our bodies release heat in order to stay cool.

But what if a person doesn’t sweat?

And why am I even writing about this?

If a person doesn’t sweat, he or she can get overheated very easily and develop heat exhaustion or even heat stroke, which can be deadly.

And I am writing about this because Jenna doesn’t sweat.

The skin condition that Jenna was born with is called ichthyosis and there are many types of this genetic skin condition that is characterized by very dry, scaly skin.  I am thankful that Jenna’s dermatologist has told us several times that her ichthyosis is mild and manageable.  However, when the doctor told us that Jenna probably doesn’t sweat due to ichthyosis and to be cautious in the heat, I admit that I got concerned.

Why?

Because we live in Georgia…the Deep South.  It gets HOT.  It gets REALLY HOT.

It’s not even June yet and we’ve already hit 92 degrees.

 

It's hard to tell in this pic, but Jenna's face was VERY red after sitting in hot car for a few minutes.

Fanning herself in the van after playing on the playground

 

I first noticed that Jenna didn’t seem to sweat on “Gotcha Day” in China.  I was sweating buckets in the room where all the families waited to get their sons and daughters.  Jenna was crying and upset for several minutes after we first got her, and on top of that, she was bundled up in two layers of clothes.  Never once did I feel her sweat, unlike everyone else in the room.

 

Then it became pretty clear to me that this may be an issue while we were at some friends’ house for a Super Bowl Party in early February.  Jenna was having fun playing inside and it didn’t take long for me to notice her face getting really red.  I felt her skin and it was on fire…but absolutely no sweat.

Since that memorable Super Bowl Party, there have already been many times that I’ve been out-and-about with Jenna when it’s warm outside and her face has gotten really red.  People ask me if she’s okay or they comment that she’s getting a tan (HA!)  Without going into details, I tell them she’s hot because she doesn’t sweat.

For now I feel like I am able to “control” Jenna’s environment pretty well since she is only three and with me all the time.  But there is bound to come a time as Jenna gets older when she’ll want to do activities with her friends that may be dangerous because of the heat.  And obviously, as she gets older and goes to school, camps, and participates in other activities, I'll need to educate her teachers and friends about the importance of keeping her cool when the temperatures heat up.  She may not always like this, just like a person with diabetes doesn't like to have to deal with checking blood sugar levels, but it will be necessary.

So what’s the key?

There is no one key, no magic bullet.  But aside from prayer and lots of lotion, one thing I’ve quickly learned to provide for my sweet girl that doesn’t sweat is this: WATER, WATER, WATER!

For someone that doesn’t sweat, water is a MUST.  The FIRST Foundation is a wonderful resource for people with ichthyosis, and I recently read an article about a young boy that runs cross-country.  In order to prevent him from getting overheated, his mother stands at certain places along the race course and throws gallons of water on him when he runs by her.  This is just one example of a mother with a child that has ichthyosis doing what she needs to do so that he can do what he loves to do.

And I want to do the same for Jenna now and as she grows.  Jenna loves to drink water and thankfully I already know that she loves being in water.  She jumped right in the water at a recent birthday party at a pool.  She loves her nightly bath time.  And she had a great time running through fountains at the park on Mother’sDay.  I have a feeling we’ll be spending most of our time this summer running through sprinklers or at the pool near our house.

We can't wait for the pool to open in a few days!

 

This was last summer when I was still dreaming of having Jenna in my arms.

Water is obviously necessary for all of us, and for Jenna, it can be a lifesaver.  But as a mom to four precious children, my greatest desire is for them to soak in the Living Water, Jesus Christ...the true life-giver and lifesaver.  In this life, they will have trouble, but with Jesus, they will never be thirsty and their souls will never run dry.  In fact, I recently heard Chris Tomlin's new song called "Waterfall."  It speaks volumes about how God is an ocean to our dry souls and His love soaks us like a waterfall.  And for someone that doesn't sweat, I think it may become Jenna's theme song.

No sweat?  With Jesus...no problem!

A Banner Weekend, Part 1--RACE for the Orphans

The 2^nd Annual RACE for the Orphans was on Saturday.  Watching over 375 runners and walkers, adults and children, from our community and beyond participate in the RACE was absolutely amazing. 

 

 

 

 

The two families that this year’s RACE supported said they have never felt more blessed.

And watching Jenna run the Tot Trot and cross the finish line with a huge smile on her face was miraculous. 

 

 

A lot of work is put into this “event” that is over within a few hours.  But I see it as more than an “event.” 

Psalm 147:10 says God's "pleasure is not in the strength of the horse, nor his delight in the legs of a man, the LORD delights in those who fear him, who put their hope in his unfailing love."

That is my hope for RACE for the Orphans.  It's more than a one day running event...it's an opportunity for lives to be transformed and for the Lord to be glorified.

Only God knows whose hearts may be changed for eternity by participating in the RACE.  Only God knows what families may feel called to adopt by participating in the RACE.  Only God knows who may develop a love for running and living a healthy lifestyle by participating in the RACE.   Only God knows how many children that were once orphans will run in the RACE with their forever families. 

My heart bursts with joy at the possibilities and all I can say is…

A Banner Weekend, Part 2--Mother's Day 2014

As if Saturday’s RACE for the Orphans wasn’t enough for a banner weekend, Mother’s Day was on Sunday.  Last year on Mother’s Day I wrote a blog entitled "A Mother's Day Like None Other."  And that was the truth…it was my first Mother’s Day without my mom, it was my first Mother’s Day with a daughter thousands of miles away from me, it was my first Mother’s Day wondering about our daughter in China’s birthmother, and it was my last Mother’s Day with three children to embrace.

But now I am realizing that this Mother’s Day was also like none other.  It was my second Mother’s Day without my mom, it was my second Mother’s Day praising God for Jenna’s birthmother, but it was my first Mother’s Day to coincide with the 6-month anniversary of Jenna’s “Gotcha Day,” and it was my first Mother’s Day with four children to embrace.

 

It was a joyous day being surrounded by my four blessings from God.  Jason went to be with his mom in North Carolina, so after church the kids and I relaxed for a while at home and then ventured out to Carl Miller Park. 

The "castle park" area was closed, which ended up being a good thing because it was very hot outside and the fountains were open for business.  The kids loved running through them, another first for Jenna.

It was a beautiful day together, and I often found myself in disbelief that four children call me "mom."  There is no greater name to be called!  

I couldn't help but look at Jenna on our first Mother's Day together and praise God.  I am so thankful that one woman in China chose life for our precious Jenna.  I am so thankful that her courage outweighed her fear in order to give Jenna over to the unknown with the hope of a life better than what she was able to offer her.  And I am so thankful that God led us on the journey to bring her into our family...forever.  It's hard for me to believe that it's only been six months since our "Gotcha Day" in China, but there was no better way to celebrate Mother's Day than remembering that special day and all that has transpired in these six months...it's truly been miraculous! 

But I'd be lying if I didn't share about my deep grief and how much I missed my own mom on this second Mother's Day without her.  In fact, I cried myself to sleep.  It was a gut-wrenching cry, which doesn't happen as often these days, but obviously my soul needed a good cry.  As much as I'm thankful she is in heave and no longer suffering, I admit that I miss her voice, I miss driving to Ohio to see her, I miss talking to her several times a week on the phone, I miss getting her silly texts and emails, and I miss telling her all about her amazing grandchildren. 
  

Mother's Day will never be the same without my mom.  Even though there is sorrow, I find joy in all the memories I had with her and I hope my four children will look back when I am gone one day and experience this same joy.  But above all else, I hope my children know the love of their Heavenly Father and my love for them to the very end.

Roots and Wings

Lately I've been struggling more than I usually do with my children growing up. 

I recently registered Jenna for preschool and earlier this week I registered Andrew for "big school" kindergarten.  Nathan will be 10 later this year and Shelby is getting so tall I feel like I can see her growing with each new day.

And to be honest, I often wish I could make the ticking of the clock just STOP.

I vividly remember so many milestones with Nathan, Shelby and Andrew--their first smile, their last night of nursing, their first steps, their first days of preschool, and so many other significant moments. 

And even though I wasn't able to experience most of these milestones with Jenna, just in the last 5 1/2 months there have been so many "firsts"--her first taste of Chick-fil-A, her first time sleeping without me in her room, her first time to go to church, her first Thanksgiving, Christmas, and Easter, and her first mommy & me program (just to name a few). 

All of these milestones are cherished memories that I hope my brain will always remember.  But at the same time, holding on to these memories often makes me sad because time goes by so quickly and children grow up so fast.

But this week I was reminded that it is GOOD for my children to grow...that is what they are created to do. 

And it was this tree that God used to remind me of this truth.

We planted this tree three years ago in front of our house.  Nathan got it from his kindergarten teacher at Elm Street Elementary School on Arbor Day.  It was just a seed three years ago and now it stands tall, strong, healthy and beautiful. 

Yesterday I read this quote by one of my favorite pastors:

"Everything great begins with a tiny, fragile seed. Every seed takes time. Plant well. Stay faithful. This is the way of God." —Louie Giglio

WOW!  I love this and it was a clear reminder to me to stay faithful in taking time to give my children the roots they need to GROW.

My greatest desire, my greatest prayer, is for my children to love God and love people.  Or as we often say at home, "LGLP."  The kids know what those four letters mean.  Nothing else truly matters in this life.  If they grow up loving God and loving people, my mission as their mom will be complete.  And this isn't something I dreamt up...it's straight out of God's word.  When asked what the greatest commandment is, Jesus answered:

"Love the Lord your God with all your heart and with all your soul and with all your mind.  This is the first and greatest commandment.  And the second is like it: Love your neighbor as yourself." (Matthew 22:36-39).

But my children don't just need strong roots (and I'm obviously NOT referring to genetic roots here) but rather roots of faith, love, compassion, and grace. 

They also need wings to become all that God wants them to become in order to love Him and love people.

This is often where my struggle lies...giving my children wings.  Birds have wings so they can fly...or should I say, most birds use the wings God gave them for that specific purpose (some are too heavy to fly, but this definitely isn't a scientific blog, ha!)  Wings allow birds to fly away and fly wherever they want. 

As a mom of four precious "birds", I want to keep them safe in the nest.  Do I enjoy watching them thrive and experience new things?  Of course I do!  But at the same time, there are days I just want time to slow down or completely stop so they don't keep growing and can't fly away. 

But that day will come.  In fact, last September when Nathan turned 9, he started singing the line to Bon Jovi's "Living on a Prayer," song that says "Oh, oh, I'm halfway there..." (yes, that is the one Bon Jovi song my kids have heard because it's on an '80s mix CD that we all have fun singing to in the car).  I asked Nathan why he was singing that and his answer: "I'm halfway to going to college."  OUCH!

The day my four children leave the nest is coming sooner than I'd like to admit.  And since I don't want to keep them from becoming all God created them to be, I need to give them strong ROOTS but also strong WINGS...not simply to fly but to soar!

So back to this amazing truth by Pastor Giglio:

"Everything great begins with a tiny, fragile seed. Every seed takes time. Plant well. Stay faithful. This is the way of God." —Louie Giglio

I want my children to be great...great in God's eyes.  They start out as tiny, fragile seeds that require lots of time and nurturing...sometimes more than I think I have to give and that's why I have to rely on the Lord.  And if I'm faithful, they will grow and become all God intends them to become. 

Roots AND wings...this, too, is the way of God.