Holiday decorations

Sunday we decorated for the holidays at two special places.
Granny and Grandpa Brown's place.

And, Megan's place.

We wanted them to know that we were still thinking about them every single day. They are part of all our holiday memories and will be forever.

Please take the hand of your small child

Holding an infant's hand is a miracle. Their hands are so soft. Their fingers are so tiny around one of ours. I loved it when my girls would hold my finger while I held them in my arms. I never wanted to move or put them down.

When my girls got older they would grab our fingers less and wanted to be more mobile. Megan was content to ride in a stroller when we went places. Monica, on the other hand, was the complete opposite. She liked to go, go, go - the energizer bunny that girl is. She wanted to get out and run all over. She didn't want to hold hands either. She wanted to be free to roam wherever she wanted. This made me nervous when we were in public places (parking lots, shopping centers, and the like). She would wiggle out and break away at the slightest chance - she made her own chances too with that fiery attitude of hers.

Finally, I got it through to Monica that she needed to hold someone's hand and stay nearby. Monica would hold Megan's hand alongside the stroller and later the wheelchair. This would help us know she was as close as possible to us at least. Monica knew that Megan couldn't hold her hand too tight and force her to stay. But, Monica also loved Megan and wanted to be near her anyway.

Every time we got out of the van when we arrived somewhere I would say to Monica, "Get a hand." She would always say, "OK, Megan's!" Ken and I would push Megan and watch as Monica held her hand and talked about what we were going to do at the store or wherever.

This October, after Megan went to Heaven, Ken and I took Monica to Disney World. We talked to her about what it was going to be like, that there would be many, many people there, and that she needed to stay close to us and hold one of our hands because we didn't want her to get lost.

Monica was a little more cuddly in October anyway and said she would try to help us out. When we got to Disney World we said, "Ok, take a hand." At first she made a game of it and said, "Both hands." Then she wanted us to swing her back and forth as we walked across the parking lots.

Eventually, Monica saw all the people and would either hold a hand or lean into one of us so we could put our arms around her.

Every place we went inside Disney World - whether it was a show, a ride, a train, a ferry, or a monorail - the voice from the loud speaker would always say, "And please take the hand of your small child while you exit." The first day, I repeated those words to Monica over and over and she would reluctantly take my hand because she heard it and she was starting to understand why. (It wasn't just me telling her this time).

Toward the end of our visit, Monica would hear the voice on the speaker and say to me, "Please take the hand of your small child."

When we got home from our trip, the first few times we went out in public I said to Monica, "Please take the hand of your small child" and extend my hand for her to take. It only took one or two times for her to realize what I was talking about.

Now, she says to me, "Please take the hand of your small child" when we go places. My answer to her? "Gladly, you don't have to tell me twice."

Holiday Hospitalizations

The following list is of all the times our family has spent in the hospital on holidays. Illnesses do not follow the calendar and come whenever its convenient or causes the least stress. Our family celebrated the holidays no matter where we were. We brought meals to the hospital and did our best to have the best holiday we could just knowing that our family was together. These holiday hospitalizations show the year and the reason why Megan was hospitalized. We joyously celebrated the fact that we were together.

Halloween 2000 = Feeding Difficulties
Christmas 2000 = Dysphagia and swallowing
New Year's 2001 = G-tube placement
Spring Break and Easter 2003 - G-J tube placement, nissen, muscle biopsy
Memorial Day, Monica's Birthday, My sister's birthday- 2003 = Parainfluenza
Spring Break and My sister's wedding 2005 = Pneumonia
Thanksgiving 2006 = Pneumonia with pleural effusion
Spring Break and Easter 2009 = Suspected neuroleptic malignant syndrome and parainfluenza
Mother's Day 2009 = MRSA infection
Father's Day 2009 = Central line bacterial infection
Labor Day and Ken's birthday 2009 = Respiratory failure

Today, we celebrated Thanksgiving as a family changed. We also took a trip to the cemetery and thanked God for giving Megan to us for nearly 10 years.

Now, I would like to invite everyone who reads this post to please pray for any families who may have a member that is struggling with their health. This holiday season I am going to try to remember to pray for those who are celebrating in unfamiliar and scary situations because I know what it feels like. These families need strength and comfort wherever they are.

Thankful for...

...family!

These people have walked with us for our entire journey. We couldn't have gotten through so many rough periods without them. We continue to lean on them for strength, prayers, and a shoulder to cry on. Hopefully, we haven't leaned too hard. We love them all so much!!

Treasures in Heaven

Matthew 6:19-21
Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moth and rust do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also.

We can have things to remind us of our treasures, but those things in and of themselves are not the treasure. Those we love and show love to are the real treasures.

Megan showed us how to love and to prepare for the future. While it may be a long journey before we see her and our other loved ones again, we know with our whole hearts that we will see them again.

A few weeks ago our pastor gave us a visual of the concepts of life and death here on earth and in heaven that has been helpful. Here on earth we endure the laws of subtraction. Everyone has a limited amount time on earth and our family members are taken from us one by one. In Heaven, our time is infinite and those we love just keep coming and coming and coming. What a Celebration that will be!

Picture Proof

I never really knew my great-grandparents. We have a picture of my younger sister being held by my great-grandfather (on my mother's side) as an infant. That picture was taken just months before he passed away. Although, I am not sure who has this picture now.

My Grandpa Brown was given a life-extending (30 years - a true miracle) kidney transplant just after my parents were married in 1972. Well, when my two daughters were born, I rushed them to see my Grandparents to get "proof" that they met in real life. We knew my Grandfather was getting frail when Megan was born.



So, as soon as Monica was born we rushed her over too. This was taken when she was only a week or two old.



This one was taken with Grandpa and Monica just a few weeks before he died.



We were fortunate enough to get a picture of my Dad's parents with both of our girls at a family reunion just over a year before my Grandma died. They lived across the country from us. Actually, this is a picture of all of their great-grandkids at the time. Megan (left of Grandpa) and Monica (right of Grandma) were the youngest.



Then, in 2008, when my sister got pregnant after being told it might not be possible for her to get pregnant, we encouraged my Granny to "keep on" so that she could meet little Livie. When Livie was born, we couldn't wait to get a picture of Granny and Livie. Here she is snoozing with Livie - Monica was watching and had to get into the picture too.



Granny loved babies and loved holding them. She loved being a Grandma and a Great-Grandma. She could hold our babies for hours and hours.

This spring we were lucky enough to find and purchase matching dresses for Megan, Monica, and Livie for Easter. As it turned out, Megan spent quite a bit of time in the hospital this spring (3 weeks in April). We didn't know if we would be able to bring Megan home, much less attend Easter Sunday at church. I shared with a friend that we had purchased matching dresses for Easter and were hoping to be able to get a picture of the girls wearing them and I hoped that God would allow us to keep Megan long enough to get that picture that we wanted. When Megan got better enough to come home we decided as a family to save the matching dresses and just take the girls to a portrait studio when Megan was feeling better.

Needless to say, Megan had a difficult time staying out of the hospital this summer too (1 week in May, 3 weeks in June, and 1 week in July). We never got a chance to take the girls to the portrait studio. However, on Tuesday, August 4, we got this picture.



It is of the three girls wearing their Easter dresses for the first time at Granny's funeral. Megan had a very sleepy day and we didn't really see much of her eyes. But we have this "proof" of the fact that she met Livie if we weren't able to get to the portrait studio.

Livie will know that she met Megan and that Meggie loved her too.

In the Arms of the Angel

Thank you, Kristi, for making this video from the pictures on our blog. I didn't realize I had so many different ones already posted.

Hope

Jeremiah 29:11-14a
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you," declares the Lord.

The bold words of this passage are the part most people are familiar with. As a matter of fact, these words were the only part I remember memorizing or hearing anyone quote. My dorm floor at college even put these words on the back of one of our t-shirts one year. I wore it until it virtually fell apart. Every now and then I read the words on the back.

This verse has come to my mind a lot recently. What my family has been through the last ten years, and even more so the last couple of months, has felt like harm. We can physically feel the pain and longing for something better. We have felt feelings that don't even stand on the scale of prosperity.

Then today I read the couple of verses following this passage. Jeremiah 12-14a says, "Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you," declares the Lord.

I don't know what my future on earth holds. But, He has given me a reason to hope for my future. He has my daughter.

Running beauties

The wonderfully romantic pose I wanted to create - ended up looking like this:


If only I had her grace.

Familymoon - Beach Love

We spent a week of our "familymoon" at a hotel on the "Gulf side" beach. I was working on a sandcastle our last beach day when Monica came to me and said, "Look what I made, Mom!"



I expected to see that she had finished a nice mold and looked up. "Where is it?" I asked, looking around for the molded sand she'd created. "No, you have to come over here." She said. This is what she made.



I told her I wanted to take a picture of her "creation," her declaration of love towards her sister. She said, "Wait! I want people to know I wrote it."



But, I couldn't fit it all in one frame.



God knew I wanted to write about Megan in the sand but was too scared to ruin the wonderful time everyone was having at the beach. I gave Monica the biggest hug I could right at that very second. She wrote it for me.

A Poem

Heaven's Very Special Child

A meeting was held quite far from earth,
"It's time again for another birth"
Said the Angels to the Lord above.
"This special child will need much love.

Her progress may be very slow,
Accomplishments she may not show.
And she'll require extra care
From the folks she meets down there.

She may not run or laugh or play,
Her thoughts may seem quite far away.
In many ways she won't adapt
And she'll be known as handicapped.

So let's be careful where she's sent,
We want her life to be content.
Please Lord find the parents who
Will do a special job for You.

They will not realize right away
The leading role they're asked to play.
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge so meek and mild
Is Heaven's Very Special Child."

--author not known

Thank you Denise for giving me this poem.
I hope it is a blessing to others who read it also.

Nightly Prayers

Every night I pray with my girls before bedtime. I sit by their bed, rub their foreheads with my hands, tell them I love them, and say our prayers.

Every night I would pray the exact same words for Megan.

"Thank you, Jesus, for my Megan.
Give her a good night's sleep and protect her tonight.
Help her to not be afraid
And to always know that You are with her.
In Your Name, Amen."

I was always afraid that Megan would need something and not be able to tell me about it or that she would be afraid and I wouldn't know it.

Monica's prayer was:

"Now I lay me down to sleep.
I pray the Lord my soul to keep.
Let angels watch me through the night.
Until I wake with morning light."
(And then she could add anything else on her mind too)

Last night Monica and I were praying and Megan's prayer came to my head as it has almost every night since she's been gone. Monica and I prayed:

"Thank you, Jesus, for today.
Give us a good night's sleep and protect us tonight.
Help us to not be afraid
And to always know that You are with us.
And give Meggie a kiss for us too.
In Your Name, Amen."

Jesus, I heard you had a big house!

I grew up in a family of singers - although I don't personally sing. I remember my sisters singing with my Dad in church as children. One of the songs my older sister sang for many years was "Jesus, I heard you had a big house" written by the Gaithers.

Our family always enjoyed the message of this song and thought it was good for kids to know that Jesus had a place He was preparing for them also. We had no idea way back then how much this song would mean to us now. It was one of the first songs I thought of when Megan was diagnosed with her terminal illness. I also played this song to Megan many times this September to help prepare her for her Great Transition. My dad made me a slide show with pictures of Megan using a professional recording of this song.



Here are the words to this wonderful song:

Jesus, I heard you had a big house,
Where I could have a room of my own.
And Jesus, I heard you had a big yard,
Big enough to let a kid roam.

I heard you had clothes in your closet,
Just the right size that I wear,
And Jesus, I heard if I give you my heart,
then You would let me go there.

Jesus, I heard about meal time,
when all your children come to eat,
I heard you had a great big table
Where every kid can have his own seat.

Jesus, they said there will be plenty
of good things in heaven to share,
And Jesus, I'd just like to tell you
I sure would love to go there.

Jesus, I heard in your big house
there's plenty of love to go around.
I heard there's always singing and laughter
to fill the place with happy sounds.

And I've been thinking that a friend
who would give me all that he's got
Before I even have met Him
Well, He sure must love me a lot.

And Jesus, I'd just like to tell you,
I sure do love you a lot!