Unpacking

Sorry it took me a few days to get this one posted.  We are home!

We had a sweet last day on the unit.  Maggie said goodbye to several of the team members who took such great care of her.   We were sad to leave them and I think they were sad to see her go.  She loved her time in therapy and the nurses became like 2nd mommas to her.

On the last day, I dressed her in an outfit that was given to her while she was still in ICU.  It says, "I Am God's Masterpiece."   I saved it for her going home outfit as a testimony of all that God had done in her life in such a short time.

The ride home was uneventful and similar to car rides of the past.  She was out in a matter of minutes.

The night we got home, the excitement continued when Ruthie lost her first tooth.   Life never slows down around here.  

So I titled this "Unpacking" because that is what we have been doing the last 3 days on several levels.  Yes we have been unpacking physically but we have been unpacking emotionally and spiritually as well.  I was thinking in my only quiet space (the bathtub) yesterday about how we have brought home both baggage and gifts in each of those areas.   I had just finished putting away our physical baggage and gifts when it hit me that there was a lot still out there to deal with that might not be put away as easily.  

This experience has changed all of us.  Emotionally I discovered that I am stronger than I thought I was but also more complex than I anticipated.  Here when things are settling down, I strangely feel most unsettled.  I know it doesn't make sense, but it comes in waves and I hear that it is normal and to be expected.  We are all finding our place again and the family is being patient with my sudden urges to clean out various closets or take on big projects.  The kids seem much more settled now that we are all together and Trent I think is adjusting better than any of us.

Spiritually this experience has strangely been a gift.  Trent and I have both grown in our understanding of who God is and how He moves.  This has prompted great conversations with the big 3 and I think in the end we will all say that we are spiritually in a better place for having to deal with God honestly through this.  I have been doing some writing about what God has taught me and that has been incredibly therapeutic.  I don't know if it will become anything more than a gift to Maggie some day but we will see.  

This picture was taken tonight.  We are taking turns sleeping in Maggie's room so we can administer her 2:00 am IV and I shot this just before she crashed.  Sweet girl.   :) 

Thank you as always for all of your prayers and encouragement.

Guided to the End

Today is Maggie's last day of therapy and our last night in the hospital.  I have known this day was coming for weeks but it is still a bit surreal.   We have spent this week slowly bringing things home and saying goodbye to all of the friends we have made at TCH.  Several people have stopped by her room just for social visits.  I love the relationships we have formed with her care team.  They really do love her.   Several have mentioned how amazed they are by how good she looks and how her improvement encourages them.

I had a cool moment yesterday with one of the nursing assistants.  She came in to change Maggie's bedding and was humming a song that I recognized.  I smiled and started to sing along.  She got all excited and started singing too.  Here are the words to the song:

Wonderful, Merciful Savior

Wonderful, merciful Savior
Precious Redeemer and friend
Who would have thought that a lamb could
Rescue the souls of men
Oh, You rescue the souls of men

Counselor, Comforter, Keeper
Spirit we long to embrace
You offer hope when our hearts have
Hopelessly lost the way
Oh, we hopelessly lost the way

[Chorus]
You are the one that we praise
You are the one we adore
You give the healing and grace
Our hearts always hunger for
Oh, our hearts always hunger for

Almighty, infinite Father
Faithfully loving Your own
Here in our weakness You find us
Falling before Your throne
Oh, we're falling before Your throne

The verses hit me and I started to cry.  I knew God had ordained that moment here in the wrap up to remind me that he had been there right beside us the entire time.   A friend texted me as I was listening to the song over and over and asked how I was feeling.  I responded, "held".   What?  Did I really just say that?  Yes, I finally felt what it meant to be held.  It was not a momentary feeling of comfort but an overarching reflection on God's continued presence and sovereignty.  I didn't even think about it before I typed that word which is probably why it got out before my filter of self-reliance caught it.

My friend Rebecca and I have had multiple conversations over the past few months about what it means to be held.  I have told her how I didn't feel held but instead I felt like God was sending me out to do what I needed to do.  Rebecca who normally affirms all of my spiritual insights refused to accept this one and would regularly throw verses back at me about God carrying us and holding us in the palm of His hand, but I just didn't feel it.  I didn't at any point feel abandoned but I certainly didn't feel snuggled either.

Yesterday it came together for me, I think.  I believe the language we use in the church of training people up and sending them out is short sighted.  It implies a sense of self-sufficiency.  The message is, you have the tools you need so go put them to good use and climb that mountain for God.  But that is not the picture for me (after this experience anyway) because it leaves out the guide.  We aren't sent out.  No, we are guided.  The guide makes the map, packs our supplies, pitches our tents for a place to rest our heads, nurses our injuries, cheers for us when we struggle, debriefs with us along the way, and leads us over the mountain while taking every step beside us.  And yes, Rebecca, sometimes even carrying us. :)

So it appears we will wrap up this guided adventure in about 24 hours.  Thank you for all of your prayers, words of encouragement, and tangible support.   Please continue to pray for our adjustment when we get home.  Maggie is not mobile yet and has not had anyone further than arms length away from her in 2 months.  I believe we may be in for a bit of an adjustment.

First Day Memories and Hopes for a Great Year

Today I sent the big 3 off to their first day.  Like most of our summer, it didn't quite fit the motion picture I would have written for us, but it was sweet in its own special way.  Trent was at the hospital this morning with Maggie and I managed the send off just fine.   The last few years I have planned a photo shoot around the first day or even made a video to share our experience.  This year, I was really proud of myself when I remembered to pull out my camera.

 Jack had to leave early to catch the carpool for his first year of intermediate school.  He was super excited and that was a real blessing to this nervous mother's heart.  His enthusiasm was evident in his willingness to even stop and let me take his picture.  We did, and he was off.  I am praying it is a great year for him and that God places some sweet friends in his path.

Ruthie was none too excited about waking up early or having her picture taken.  I believe she is the most nervous about this day as she was not her usual expressive self.  She has had a rough summer and I am praying for a year of confidence building for her.  She has a great teacher and that gives me real peace.

Sam woke up as sweet as ever.  He is excited about his teachers and to have so many of his friends in his class.  He has already told me that he wants to learn to play guitar, learn to play the piano, win the spelling bee, and be in the high school musical this year.  I love his ambitious spirit and zest for life.  I am praying for responsibility for him this year.  He will be switching classes for the first time so getting where he needs to be with everything in tow might be a bit of a challenge. 

Trent left notes for the kids to open this morning.  Jack read his before he left and said, "that's cool".  His heart was in a good place and I am certain Trent's words contributed to that.  Sam and Ruthie read theirs too and it was an equally sweet time.

Sam wouldn't hold my hand on the walk to school.  Apparently he is too old for that 3 years before his brother figured out I wasn't cool anymore.

I love those kids and I trust that God has them right where they are supposed to be.  I doubt it will go like I see it in my head (because it rarely does), but I believe it will go exactly like it is supposed to.

Adopted!

I had a sad moment with Ruthie the other night.  We were eating dinner with some friends who are preparing to adopt their foster child.  I asked Ruthie to tell him what adoption means and she said, "It is where I live."  

What?! That's All?  Just where you live?  Clearly I have failed somewhere.  
A hundred thoughts went through my head in a few short minutes:
Have I not told you that you were chosen?
Do you not know how much you are loved?
Have you heard what we sacrificed to bring you into our family and how worth it you are?
Is it not clear that even though you were not born to me, I feel as though you are completely mine?
Did you miss the part where I love watching your life unfold and anticipating how you will change the world?
Adoption is not just where you live!  

Later that night we snuggled in bed and discussed what adoption really meant.  I said all of the things that I thought I had said before but that she clearly needed to hear again after a tumultuous summer.  I saw this peace wash over her as she reached out and grabbed my hand then fell asleep.

Last night I was back up at the hospital.  As I was falling asleep myself, I replayed my experience with Ruthie in my head and God said, "Now you see exactly how I feel!"
It was an aha moment.  
How many of us relate to God adopting us into his family as just a place to live? We see heaven as the goal and the end?  How many of us miss the relationship? the love? the sacrifice? the hope and future? the purpose for today?  

Ruthie wasn't ungrateful for a place to live and I don't think anyone is ungrateful for heaven, but there is soooooooooooo much more!  Let us grab hold of the life that adoption in Christ gives us and not just the residence it secures. 


In case you are not familiar with the notion that you were adopted by Christ:
“In love he predestined us for adoption as sons through Jesus Christ, according to the purpose of his will, to the praise of his glorious grace” (Ephesians 1:4-6)

“But when the fullness of time had come, God sent forth his Son, born of woman, born under the law, to redeem those who were under the law, so that we might receive adoption as sons.” (Galatians 4:4-5)

“For you did not receive the spirit of slavery to fall back into fear, but you have received the Spirit of adoption as sons, by whom we cry, ‘Abba! Father!’” (Romans 8:15)

“And not only the creation, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for adoption as sons, the redemption of our bodies.” (Romans 8:23)

Slowing Down

The strangest thing happened over the last 7 1/2 weeks.  My crazy busy life came to a screeching halt.  All of those places I had to be and things I had to do were immediately put on hold so I could focus on what was most important.  And you know what happened?  Yep, the world went on.   My perception of what was important and the reality of what really needed my time were not in sync prior to June 29th.

Life is starting to pick back up again.  Ruthie started soccer last week, school starts next week, Maggie comes home on the 28th, and the cycle will resume.  Oh how I want to do it better.  I so don't want to get sucked back into the hurried life that inevitably works to choke out the purposeful life.  We may have to institute some changes around here.

So an update...

Maggie had another MRI today.  Her frontal lobe continues to improve at a steady rate.  Her thalamus, however, is improving more slowly.  The plan is to send us home in a week on continued IV antibiotics.  Maggie will have 8 hours of in home therapy per week as well.  Because of her pic line and because her WBC is low, we will be limited to where we can take her and what we can do.  It will be great to have her home though and I am setting my focus there.

On another note, we had an incredibly special visit today from another member of the family. Our good friends who are adopting our former foster child were in Houston and came by the hospital.  It was great to see him again and hug his neck.  He is doing very well with his parents and you can see God's hand all over that family.   We figured out that he has grown three clothing sizes in one year.  It's amazing what a little love can do.  We are thankful that God allowed us to be a part of his story.  What a blessing!

A Very Special Visitor

Maggie had a very special visitor today.  A friend arranged for  Princess Anna from Frozen to come see her.  Maggie watches Frozen probably 5 nights a week and can even sing parts of Let It Go.  Disney gets them young and it is certainly true in this case.

I wasn't sure how Maggie would respond but I think it is fair to say she was stunned.  Princess Anna was great about giving Maggie room to warm up to her. 

We practiced walking for Princess Anna.

And spent a lot of time reading together.

Eventually she let Anna pick her up.

By the end she was overwhelmed by all of the excitement and started to fall asleep.

It was a sweet visit and we have been saying "Anna" all day since. 

Updates and A New Prayer Request

Overall Maggie is continuing to improve everyday.  She is sleeping better at night and goes to all of her therapies with a smile on her face.  The staff here go out of their way to make it fun for her and that certainly helps.  Here are a few shots from the last week.  

(As you can see from this picture, she is still having a little trouble with her eye muscles when focusing)

Maggie's speech and cognitive ability seem to be returning the fastest.  Her left leg is slower to come along.  She steps erratically with that left foot so they have placed a weight on her ankle to help her with control.  I would say her left arm is the slowest to improve.  It is getting better but she still doesn't use it voluntarily.  

Maggie's WBC count is steadily dropping and this is most likely due to her IV antibiotics.  Today they decided that she cannot participate in pet therapy because of the risk of infection.  They are calling Hematology and Infectious Disease back in to address their concerns and determine what is best to do next.  You can pray that her WBC comes back up and if you are the least bit sick, it is probably best to stay away.  

The big 3 are getting ready to go back to school in 10 more days.  Even though I am spending every other day with them, I don't feel completely connected.  You can pray that my time with them next week is sweet and that we get some real eye to eye time.  Trent and I are planning to go on our first date in 2 months this weekend.  Trent's mom is coming in to help out so he and I can get dinner together.  I am looking forward to that more than you know. 

Our tentative discharge date is still August 28th.  I pray she is walking independently by then and using her left arm more. I don't want to take her out of the hospital immunocompromised either so I would really like those WBC counts to come back up.  Thank you for praying and caring for our girl.  

On a side note:   I was talking to Jack this week about what it looks like to not just obey God because you are supposed to but to be authentically transformed into the kind of person who naturally obeys God.  We talked about it in comparison to people who step up and help others when the world is watching and it brings them attention compared to those who step up when they have nothing to gain.  I was able to use the generosity and selfless sacrifice of so many of you to illustrate over and over again what it looks like for someone who loves Jesus to respond to a need out of the overflow of being transformed.  Your sacrificial and even sometimes anonymous love of our family has demonstrated to my children what it means to be a true follower of Jesus.  They have seen it and they are better for it.  Thank you for being my village. 

Where We Have Been and Where We Are

Let me explain what you are looking at.  The top picture is Maggie's cyst on her cortex.  The picture on the left was taken on July 1st and the picture on the right on August 6th.  The bottom picture is of her thalamus.  Again the one on the left is from July 1st and the one on the right from August 6th. As you can see, we clearly have improvement but we are not out of the woods yet.  

Maggie's rehab recovery mirrors her images.  She is getting better everyday but we still have a long way to go.  They are trying to train different parts of Maggie's brain to compensate and re-map the function that was controlled by the damaged areas.  One way you do that is to take her back through her developmental milestones starting at the beginning.  This week we celebrated a modified commando crawl and pulling up.  Next week it would be great if she could crawl on her hands and knees and stop locking out her knee when trying to stand.  We are also celebrating that she is transitioning between positions better.  Like I said, we are better but we are not out of the woods yet. 

Trent and I are doing well with the switching off.  Our church has been providing meals and that has been really helpful.  The big 3 are hanging in there just fine.  They do best when I don't make them go anywhere so we are laying low except for when we have to switch.   Our projected discharge date is still August 28th.  It will be nice to all be together again.  

Thank you for continuing to pray.  

Wherever You Are...

...Be All There.

"Wherever you are, be all there" is something I have said to myself for years.  When I am at work, I have to remind myself to be mentally completely at work.  When I am at church, I actively fight the urge to think on the rest of my day.  When I am home, I have to hold myself accountable to not  be pulled in several directions but to focus on my family.  After all, my kids don't want to relate to me from the other side of my phone or computer screen.   Truthfully,  I think my fear is that if I am not all there, I may not give it my best or remember it later and I don't want to live like that.

But as true as that statement has been the last several years, it has never been more true than now.  Trent and I switch hospital duty every 24 hrs now.  We take turns spending a day at home with the kids (or at work) and a day with Maggie.  Switching is hard because you are always leaving someone behind.  Furthermore, with every switch, I am leaving Trent behind.  It is easy to focus on what I am missing at the other location, but I can't.  So when I lay my head down at night and wonder what the other 1/2 of the family is doing, I repeat to myself, "wherever you are, be all there" because I know that is the capacity in which I can be most useful.

So that's where we are and now for the important part.


An update:  Maggie is continuing to improve everyday.  Her speech appears to be back to normal.  Her left side is improving but still has a ways to go.  She is showing more personality every day too and that is fun to see return.   She loves the ice cream sundaes at McDonalds so when we get a chance we take a stroll downstairs to watch the trains and have a treat.

I had a great conversation with one of the physicians today about mission work in China.  I was able to pass on my Chinese therapy training material and she plans to use it at an international conference in August.  God is definitely using this to impact the world in ways we never imagined.  I am thankful for that new friendship and hopeful it leads to more opportunities.

Prayer Requests:
1. Maggie has an MRI tomorrow at 3:30 to look a the abscess on her Thalamus.  It did not shrink with the last MRI and if it hasn't shrunk this week, they will likely need to go in and drain it.  This would put us back on a regular floor or maybe even in ICU.  Please pray the abscess is gone and everything is looking better.

2. Maggie is having some separation anxiety.  She cries when I have to step into the restroom or out to get a cup of water.  She didn't want to sleep last night or take a nap today but just wants to be held. I am not sure the 24 hour switch off has been best for her.  Pray she feels secure and learns that we always return.

3. Please continue to pray for the big 3.  They are growing weary of the back and forth to the hospital and spending every other day at dad's office.  Pray for peace and understanding for them.


Thank you again for holding us up.

FREEDOM! Well Almost.

There are so many great things about this rehabilitation unit that have nothing to do with rehab:

• She is no long monitored so no more wires unless she is getting meds which is only 2 hours of the day. 
• She can leave the floor for walks.
• No middle of the night vital checks.
• She can go outside!
• No more fluid restrictions and she can have more than that nasty Boost stuff that she is not a fan of.  Hello milkshakes. 

We had a great day discovering all of her new freedoms.  It was pretty amazing. 

Continued prayer requests are for full recovery and no more clots.