So Long, Farewell

Tomorrow, we pack. Ladybug to the grandparents, Lightning bug (our foster daughter) to our friend's R and LC, Pugbug will be packing to visit Uncle Frank, and Lovebug and I will be packing for a few days visit to Duke University Medical B&B. I will hopefully have some stomach issues resolved with a gallbladder removal and two other procedures in my stomach. I am not looking forward to being away from my girls, sleeping in a single bed, and taking medications that make me sick to my stomach. But I am thankful for what this stay represents.


TWO YEARS and SEVEN MONTHS since my last overnight stay in a hospital!

Wow, over TWO years!

Let's just say, It has been over TWENTY YEARS since that last happened.

Ever since I was 8 years old, I have been a patient at Children's Hospital of Philadelphia and then at Duke for at least a 2 week stay each year. The hospital became my second home. But not any more. It is such a nice blessing, to enjoy and appreciate this moment of being free for so long and not needing medical treatment overnight in a hospital facility. It will be weird going back. I may not remember what to pack. I know for sure: a fan, my own toiletries, my computer, something to read, a blanket. But what else am I missing? Clothes, yes. Because I have always refused to wear the hospital gowns. Except when I was in the ICU setting. I need to partner up with someone, and come up with some tasteful gown-wear. Pictures, yes. So I can show all the awesome staff at Duke how far Gwyn has come from her 1 pound, 6 ounce preemie cute self.

Thank you all for your prayers for this surgery. Lovebug and I will now, live and love each other gallbladderless. Sounds so romantic. It's nice to share something medical in common. We can compare scars. Perhaps, I should mention to Ladybug's surgeon next month about our family's inheritance of gallbladder issues. Yes. Ladybug is scheduled to have ear tube surgery #2, and eye muscle surgery #3 on September 2nd. Please be in prayer for her also. We would all appreciate it. Our medical journey seems never ending.

The end.

Worshiping in the midst of pain

Lately, I have been thinking, pondering, and praying for those dealing with painful situations. I have especially been touched by my friends and loved ones dealing with cancer. Of all my life experiences, cancer was one that touched me and took a great hold of my life and spirit. It was my first real and painful battle of depression. It was very difficult for me to live a joyful, passionate, eager to see the next day kind of life. It was a very painful experience. In the midst of the pain, God used music to really speak to my soul. My husband is a worship leader and so the songs he would choose for our church to sing each week, really reached down to the core of me and break me. I have noticed, that some of the top songs and albums of this year's Christian song list, can touch those going through difficult times in so many ways. Their lyrics are very powerful and so are some of the stories behind these song artists.

Blessings by Laura Story: It talks about God's mercies in disguise. The music and lyrics are lovely.

"Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise"



I loved reading the stories behind the songs. Here is Laura's personal story about her husband and creating this song.



"What does it look like when I spend years praying for healing for my husband that never comes? I feel like we’ve gotten to a place of having to make a choice- are we going to judge God based on our circumstances that we don’t understand? Or are we going to chose to judge our circumstances based on what we hold to be true of God? I’m learning that every morning when I wake up, to choose to trust God. And that’s what “blessings” is about. It’s just considering… MAYBE THE BLESSING IS ACTUALLY FOUND IN THE ABSENCE OF THE THING THAT I’M PRAYING FOR."


I Lift My Hands by Chris Tomlin: Another powerful song about crying out to God who is our refuge and strength and who is faithful and full of grace. The pictures used in Tomlin's video for this song are touching. It shows a little boy being treated in the hospital. Wearing a mask, doing a breathing treatment and riding around on his hospital bike. I can really relate to this little guy. As a child, there is so much trust and hope in one's future. As an adult, I can relate to Tomlin's words of just pouring out our hearts to God and allowing Him to hear our cries for mercy. "Let Faith Arise"

Psalm 28:2 "Hear my cry for mercy as I call to you for help, as I lift up my hands toward your Most Holy Place. "

Growing Up with a Chronic Disease

Growing up with Cystic Fibrosis was a challenge but my parents and family helped me live a very happy and vibrant, young life.

At a very young age, my body was dependent on many medications to help me battle against the inward physical deterioration that was taking place in my lungs. I was also dependent on enzymes that I learned to swallow to help my body digest my food. But most of all, I was dependent on my parents and family who so awesomely took on this challenge and placed it in God’s hands. Each and every day they so creatively found ways to allow me to live my life as a normal little girl with such abnormal routines.

Now, as the parent of a child with special needs I am so grateful for all the sacrifices my parents made on my behalf. Having a child with a chronic disease; your constantly in thought of medications, equipment, learning new medical lingo, huge expenses, hospital stays, doctor visits, limitations, emotional needs, and what their future may hold. I am sure the list could go on.

I would love to hear a perspective from a child with a chronic disease or parent and how they can relate to these sacrifices. How they look upward, when your world comes crashing down on you. What creative methods you have used, that have helped your child. And what good have you seen from such a terrible fate?

As I look back on the many wonderful things that my Heavenly Father has done in my life and think of how He used my CF and certain life circumstances, I can only be amazed and thankful for how He has used these burdens and turned them into blessings, both for me and for those around me.

“For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” {Psalm 139:13, 14}

The Hospital: A Poem

The Hospital

A building, a structure

A haven for the unwell

Where life & death are prevalent

A place so many dwell

Its outside frame seems somewhat dull

But inside; it’s quite a mix

The people there are what really matter

Without, it would be nix

Some enter it with confidence

Others with high hopes

Some come in with scared eyed looks

Others, unable to cope

Hearing the sad news of a loved one

An accident, disease, or scare

That led them to this place

It all seems like a night mare

The people here are universal

Races mixed and matched

People come in all shapes and sizes

From age 100 to just being hatched

The environment is distinctive

Some areas silenced with peace

The ER is certainly not one of them

Where most are barely at ease

The outwear is unique as well

For those who choose to stay

They wear scrubs, white coats, suits & stethoscopes

The patients wear what they may

It’s ironic that this building

Can hold so many mixed emotions

If only doctors could cure all

With some magic potion

This is a place for the dying

It’s a place for the bereaved

A place of caring, loving hearts

And hope for the well to soon leave

This place is called, a hospital

Those who enter it should know

That its worth all the pain and strife

If you leave from it and grow

-Tricia Lawrenson

{I wrote this several years ago, after living a good portion of my life behind closed doors in The Children's Hospital of Philadelphia and at Duke University Medical Center. Not only can a parent and patient of a chronic illness like cystic fibrosis can relate to this poem. But so many more lives who have been dramatically changed when walking through those doors.}