Today is day 365!

If you look down to the left sidebar at the Twitter feed you'll see that it has been 365 days since my Megan went Home! She was rare! treasured! priceless! I have been getting by emotionally lately by not thinking about the fact that today was coming. But, the last couple of days I have been thinking about how I can make today turn into the best that it can for our whole family.


Ken is working today and Monica is attending school. I have been here in my studio working. The only project I have been working on today has been to finish writing the Back-to-School Handbook for Special Needs Children. This handbook is turning out to be really awesome. I haven't released it yet because its a bit more than I was expecting it to be. I think it is really going to help people who have a special needs and/or medically fragile child start an awesome conversation with the school and keep the lines of communication open, honest, and enjoyable.

I am using today to start contributing to my daughter's legacy rather than choosing to succumb to the personal stagnation that grief can create if we allow ourselves to be overcome by it. I am choosing to take each step as I feel led to offer inspiration, help, and hope to those who are living the amazing struggle of caring for their children in unfathomable ways. I can't wait to show you what I've been up to!

"I can do all things through Christ who strengthens me!"
Philippians 4:13

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Dear Megan,

I miss you, girlie! Whenever I start to think about you, my heart smiles...then I think about what you must be doing right now. I can't wrap my mind around the place where you are, what that place looks like, how differently you look, what you are thinking about, and if you are thinking of Daddy, Monica, and I waiting to see you again.

When I hear someone speak of Heaven, I think of you. When I hear songs about praising Jesus, I wonder what it feels like to you to actually be there. I can't fathom the emotions that you must feel surrounded by everyone there. It makes my heart smile, and glad that Jesus made a way for us to know and see one another again when I get there too.

Then, I start to think about how long it may be before that takes place and I feel my eyes getting moist and start to wipe the tears. I am not sorry that you don't have to live in a body that doesn't work anymore. I don't know how you did it with such a pleasant attitude - I don't think I could have lived in your body and still smiled most days.

I just want you to know that I miss you and can't wait to see you again. You are in my thoughts every. single. day.

Love,
Mommy

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This video...

was taken exactly one year ago today!



It makes my heart sing and break at the same time.

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My girls

...loving each other. (Pooh was just wishing he could be in the action.)

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Memorial

Tuesday evening was the Riley Hospital memorial service for children who died there between July and December 2009. We drove down as a family and took along the memory book that my sister made for us in September while we were living at Riley with Megan. When we got to the service we were signed in and given a memorial booklet. It showed the order of service, the shared reading passages, a couple of prayers -- and 83 precious names.

They invited us to decorate a square in honor of Megan. They posted them on the front wall together so that we could remember those that came to honor their children that night.


This picture shows what Meg's quilt squares looked like.


They welcomed everyone.
We had a shared reading passage.
They read a passage from Psalm 139.
There was a special reading for children from an adaptation of Ecclesiastes where there is a time for all types of feelings that may be felt throughout their lifetimes.


They read the names of all the children in the program while a soothing harp played. Meggie's name was 12th, alphabetically. They also added an 84th name throughout the reading. I couldn't stop myself from thinking that it felt like a graduation ceremony. But no one was cheering. I didn't want to cheer. It's the type of event where you don't want your child's name to be read but it's coming anyway. You wonder how it will sound when its your turn. How it will feel to hear your child's name. If they will wait long enough between names. Or, if the silence will seem too long between names. There were many tear-filled eyes in the room.

Then, they called the parents forward into a circle around the front table. They shared a poem and lit the four candles which represented the light our children were in our lives and that they will continue to be present in our lives even though they are no longer physically with us. Then, they presented all of us with a carnation as we went back to our seats.

After that, the service was concluded with a short reading and we were invited to have some refreshments and to share our pictures with others and mingle. We showed a couple of people our memory book of Megan and looked at pictures of other children.

We also spoke to the parents of the girl that passed away just a few rooms away from us in September. Monica played with the 22 year old girl in the play room the first week of September. The girl was discharged by the end of the week. We congratulated her for getting to go home. The parents thanked us for raising a daughter that looked beyond disabilities and treated their daughter normally. (Monica doesn't care if the person is big, little, deformed, have tubes in their arms, legs, nose, etc. If they are able to play with her, she would play with them.) About 10 days later the girl came back into the hospital. Two days after that, she was in heaven. I didn't know the exact date until I asked last night. It was 9 days before Megan left us. They thanked us for the discussions we had with them in September. They said the way we were making decisions for Megan helped them make the right decisions for their daughter.

In retrospect, it seems amazing how being available while traveling through situations can affect the lives of others around us just before they will be making similar decisions. God's preparations and timing are perfect even when it seems long and pointless at the time everything transpires.

After that, we went to our hotel for the night. We stayed in Indianapolis because we had a mission for the next morning.

To be continued...

P.S. - Sorry I said "Then," so many times!

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100 days

...have come and gone since our beloved Megan ran to Jesus. I last tweeted that we were happy to spend any minute, hour, or day with her exactly one day before she left us.

I have created this new blog button in her honor.


If you are new to "Our Special Needs Life" you can get more information on the left sidebar titled "About Megan."

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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.

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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."

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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!

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Familymoon - We wondered...

...if Megan's mansion looks anything like this in Heaven.

...if Megan is singing and dancing like this in Heaven.

...if they clear the streets multiple times a day for parades to pass through in Heaven.

...if there was a parade in Heaven when Megan arrived the night of October 1st like this one with the most amazingly different creatures.

...if Megan participates in any beautiful parades in Heaven. (Yes, I know this is Cinderella. I didn't get any good pics of Sleeping Beauty, LOL!)

...if Megan is meeting all of the celebrities and Bible story heroes like this in Heaven.

...if Megan is eating snacks at every corner in Heaven.

...if Megan is making music like this in Heaven.

...if Megan is bathing in the Fountain of Living Water in Heaven like this.

...if Megan is as proud of us as we are of her.

At first, I was very upset that we could be at such a place so soon after saying goodbye to Megan, especially when the first thing we saw was the show at the base of the castle where they sang about dreams coming true. After all, our family was living our greatest earthly nightmare. But then, something clicked for us as we thought about it. After we composed ourselves, we realized that this was the closest place there is here on earth to help ourselves understand how great Heaven really is and the wonderful time Megan must be having there.

Then, we wondered if Megan was laughing at how much better of a time she was having than we were.

We hope she is doing all of this and more, of course!

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Flowers

Megan's flowers were beautiful. They included soft pastels to match her white and pink trimmed casket. We made sure that we ordered the yellow color she loved and even mixed in her beloved "Tweetie Bird."

Even though it is tecnically the fall season, the flowers gave me the feeling of a spring beginning.

They were soft and young, yet vibrant at the same time.

I was worried that because of the nature of the event the flowers would coincide with the life of someone who was old was mature and had lived a long life.

I was pleasantly surprised to see how many of the bouquets had so much pink and yellow. I love pink and yellow together.

The flowers combined together as one huge hug over Megan's grave site.

I just noticed the purples as I type this too.

Soft, fresh, so spring like.

The fact that it rained on Thursday and Friday has probably helped keep them looking fresh for as long as possible.

Megan's temporary marker made a perfect tie-out for the balloon bouquet we got her on Thursday for her 10th Birthday.

She was one of our pink princesses and our sunshine who loved tink along with us.

We sang Happy Birthday to Megan. We know her birthday was happier than we could ever imagine.

One of our duties of being parents is helping our children live as full of a life as they can even if it creates our greatest sadness here on earth. We truly are happy for her.

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Processing

I am an analytical thinker. I was going to put this post on about Megan's funeral and the many wonderful flowers, thoughts, etc. that everyone has sent to us. It has really been a great source of comfort to us.

I was really worried about what my last memory of seeing Megan was going to be like. I have always been very uncomfortable with death, not wanting to get close to others who were dying or already passed away. I have been the type that has trouble dealing with viewing people in their caskets. When I was in college my class on bereavement visited a funeral home and I had nightmares for a couple weeks after that field trip.

The funeral home did a very nice job with preparing Megan's body. I always viewed her as a baby because of all the care she needed. However, she looked like a porcelain angel just sleeping. I always knew she was a beautiful little girl. But, she was breathtakingly beautiful. I took pictures so that I could remember how she looked because it felt like a message to me that she is at total peace now.

Many of you also know that Megan's 10th Birthday was the day after her funeral. We bought a balloon bouquet and took it out to her grave site - which looks beautiful with her flowers on it. It was a very emotional day for us. Our family met out at the cemetery, held hands in a circle, and sang "Happy Birthday" to Megan. I could only sing two lines of the song before I started crying.

While I took many pictures last week, I find it hard to edit and prepare them right now. It is still so hard for me to say out loud that Megan is not with us anymore. It has been almost two weeks - long enough to feel the absence, but not long enough yet for her to just return from a vacation (even though I know better).

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Megan and some other friends

Megan seems to be responding to all the new changes (antibiotics, pain medications, fluid levels, and nutritional formula) we have made this last week. She slept pretty well two of the last three nights even though we have had some snags during the day with her comfort level.

We are trying to take advantage of all the time we have with her awake and comfortable. We are also thankful for the times she is resting well.

There are other families on our unit with similar circumstances that have immediate prayer needs as well. Please keep them in mind as you say your prayers for our family and Megan. We have been speaking to these families and our hearts also break for their situations because we have the knowledge of how it feels to us. I don't know if that made sense but please just remember other families who are also on the verge of saying their earthly goodbyes to their children.

We are also reminded each day just how fragile the lives of our special needs children are. Serious health crises can arise so quickly and catch the most vigilant parents off guard when they occur. This is one of the reasons we are so thankful for all of the quality time we get with Megan. We know that at any moment (or not) we could also be faced with another serious, life-altering challenge, which is another reason we so appreciate everyone who is praying and sending us their support.

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Fever and restlessness

Update: Friday, September 18, 2008
Thankfully, Megan finally slept about 10 hours last night. Her fever has also kept to 100 degrees and lower using all of the available techniques. She was less fidgety overall and took a couple one hour naps.

Megan has been having very high fevers on and off during the nights early in the week. Since Wednesday afternoon, fevers have been non-stop. Tylenol, Ibuprofen, the cooling blanket, and ice packs have kept it between 100 and 102 degrees. Megan has also been very restless the past 24 hours. She has only slept small bits of time last night and today.

We thought we had her pain under control (and evidently verbalized it too soon) just before her fever started constantly spiking yesterday. The urinary tract infection she was diagnosed with in the beginning of the week is improving.

So, we are looking for other reasons for the fever. They started Megan on anitbiotics today for a possible pneumonia. They have seen small changes in her chest x-ray that point to either problems with her inability to take deep enough breaths to get all the sacs inside her lungs to properly inflate or other infiltrates (which could be bacteria or aspiration) could be present.

We were told at our meeting on Tuesday that Megan could have up to weeks if she is experiencing respiratory failure with no other infections making it worse. If infections infiltrate, she could have less time with us. Right now we are not sure which is happening. We are praying for the "path of least discomfort" for Megan.

Whatever God's will is for Megan we ask Him to have mercy on her and that these symptoms will be contained so that we may spend quality time with her.

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Breath

Take a deep breath. Now exhale.

This simple act is something we take for granted each and every day.

For Megan, this has become so hard. Her entire body's energy is focused on supporting just this one activity. We are so very thankful for our daughter's every breath.

This Fragile Breath (Todd Agnew lyrics)

 

I searched the world for a song that I could sing
Praise to my King A gift that I could bring
But no music I found could compare to you
Not one could do Justice to your glory
What are my songs compared to yours

You speak with thunder and lightning
Your voice shakes the mountains
The foundations of the earth
All I can offer is this fragile breath
With each one I'll praise You
With each one I'll praise You more

I searched the world for a poem I could read
A rhyme that would bring Glory to my King
But no writing I found was worthy of
This God high above All other gods
What are my words compared to yours

You speak with thunder and lightning
Your voice shakes the mountains
The foundations of the earth
All I can offer is this fragile breath
With each one I'll praise You
With each one I'll praise You more

Speak to me, speak to me please
Won't You speak to me

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Maybe not now...but soon

We are waiting. We know what is coming around the corner in the near future. And, we are ready. In the meantime, we are trying to make plans about whether we should stay here, go home, or seek other placement options. 

It seems that Megan has been given relief from the virus she was fighting. The non-invasive types of support we chose to help her has gotten her through this time. She is not struggling as she was. But she is not the same as even a couple of weeks ago either.

We are loving her, caring for her, and enjoying all of our moments with Megan. If the Lord tarries, we may come home next week and be responsible for all the new changes. We have a meeting scheduled for Monday or Tuesday to discuss our treatment and/or placement options for Megan since she seems to have stabilized, although we are still working on finding the right dosages of her pain medications.

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Happy Birthday, Dad!

Well, today is my Dad's birthday. Is there a better present than seeing your granddaughter able to rest and relax for the first time in months? Granted, it has taken quite a cocktail of interventions to make it possible.

Ken and I were very glad to see the restful state that Megan has been able to achieve through the wisdom of the developmental doctors, the ICU doctors, the hospice nurses, and we can't forget the Hands of our Father who gives us gifts even in the midst of struggles.

This was our gift. Rare. Treasured. Priceless.

 

Yes, this was our Megan this morning. She has a nasal "trumpet" in her left nostril that goes to the back of her throat to keep her airway from collapsing on her, a nasal canula for oxygen support, tape to tape the tape to (did you get that?) in order to save her skin from multiple tape removals, BRIGHT EYES, AND A BIG SMILE!  

James 1:17 - Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. (NIV)

(By the way, I was able to brush her hair today too. Only after this picture was taken.)

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How God must've felt

I am a dreamer. I think in my sleep. I cry in my sleep. I have written term papers in my sleep. And, I have brainstormed solutions to problems in my sleep.

Last night was no different. Only I was given a different view or focus of my family's current situation as we watch Megan's tired body struggle to catch her breath as her chest and airway muscles are constantly in motion and we are trying to find the right combination of medications to relieve any suffering she endures.

Another bit of information I think is important for you to know is that I have never viewed the movie "The Passion of the Christ." We were gifted the movie a couple of years ago but I have never been able to bring myself to watch it. I know that the many people I have talked to about it say it is very powerful and followers of Christ are given an entirely new perspective on what exactly Jesus did for us when he died on the cross.

John 3:16 - For God so loved the world that he gave his only begotten son, that whoever believes in Him should not perish but have eternal life.
(from the version of childhood recollection)

That promise is what we hold onto to comfort us and know that our daughter is not going to be gone forever. She is getting a perfect, pain free body where she can eat, sing, dance, walk, play, praise Jesus, and pray for the rest of us here until we meet again.

With that said, I have told a few people lately that "I wish that Megan and I did not have to go through this process. Why couldn't she just fall asleep and wake up in heaven? I don't want to watch this."

Early this morning it came to me in true "Job fashion" (character full of suffering in the Old Testament)- a question. How must God have felt to watch His Son be tortured, beaten, and hung on a cross knowing that he was not going to a place of happiness, complete rest, and fellowship?

Jesus took our punishment for those few days until He Rose Again so that we wouldn't have to endure it for eternity. And, let me tell you, my friends, this - that feels like hell to us right now - is the closest we ever want to get. And, God knows how I feel exactly (actually, He knows worse).

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Finding some roses along the thorny patch

Megan is resting again now. She had a good day overall. She made eye contact with us quite a few times when people were talking to her. There were only a few times that we thought she was having pain - mostly during the peaks of her fever.

We formally admitted her to the hospice service this morning. She had a new PICC line (more permanent IV) placed this morning so that we will not have to poke her to draw blood if needed or replace IV's gone bad. (Although she was upset with the process of the procedure and voiced her opinion on the fact that she was getting "messed with," everything went well.) This is good because they got it in before the three day weekend and I certainly did not want her to turn into a pin cushion again.

They are using the IV for more continuous control of her pain medication and the medication is also absorbed into her body instead of being digested and processed like the g-tube pain medications she has been taking at home. They usually took about 30-40 minutes to kick in once they were administered.

We are still making sure she gets all her medications and feedings as we were keeping for our schedule at home. While we expect her bodily condition to worsen, we do not know how long we will be here with her. We are taking advantage of the moments of alertness we have with her, comforting her when she is fussing, and doing our best to be positive in her presence.

"The Rose"

Some say love, it is a river
that drowns the tender reed.
Some say love, it is a razor
that leaves your soul to bleed.
Some say love, it is a hunger,
an endless aching need.
I say love, it is a flower,
and you its only seed.

It's the heart afraid of breaking
that never learns to dance.
It's the dream afraid of waking
that never takes the chance.
It's the one who won't be taken,
who cannot seem to give,
and the soul afraid of dyin'
that never learns to live.

When the night has been too lonely
and the road has been to long,
and you think that love is only
for the lucky and the strong,
just remember in the winter
far beneath the bitter snows
lies the seed that with the Son's love
in the spring becomes the rose.

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