Dietrich Bonhoeffer

There is a quote I stumbled across several years ago and have always loved.  When certain people have had loss in their life, God has laid them so heavy on my heart and prompted me to intercede for them for years in prayer, even some I wasn’t very close with.  This is a quote I would always share with them.  I see now He was slowly preparing me for my own deep anguish and loss.  I had to dig this quote back out for myself, and for each of you who loved my angel so deeply.

“There is nothing that can replace the absence of someone dear to us, and one should not even attempt to do so. One must simply hold out and endure it. At first that sounds very hard, but at the same time it is also a great comfort. For to the extent the emptiness truly remains unfilled one remains connected to the other person through it. It is wrong to say that God fills the emptiness. God in no way fills it but much more leaves it precisely unfilled and thus helps us preserve — even in pain — the authentic relationship. Further more, the more beautiful and full the remembrances, the more difficult the separation. But gratitude transforms the torment of memory into silent joy. One bears what was lovely in the past not as a thorn but as a precious gift deep within, a hidden treasure of which one can always be certain.” -Dietrich Bonhoeffer


Funeral arrangements

I hated typing that title. I’m ready to press delete, lay in my bed and never come out…..

We will have a time for anyone who would like to come and visit with us at DeMotte Christian School from 11am-4pm on Saturday May 27th. This will be a kid friendly environment. There will be no casket, just a beautiful picture of Laila and lots of love. No one would recognize her without her smile……. We will have coloring stations and balloons and bright colors to celebrate who she was.

We will take a short break from 4-6:30 to rest and then will have a memorial worship service at Grace Fellowship Church. Again, all are welcome including children. We will remember Laila and be encouraged in God’s word and praise him with some of our special friends who will lead us in a time of worship. Laila loved music just like her momma so it seems only fitting to make that a part of this.

We are working with Wheatfield Elementary to create an award and scholarship to one second grader every year who spreads joy and light throughout the halls of the school in memory of our precious girl. We’re not much for flowers or empty spending so if you feel like you need to do something please contribute to the scholarship fund we have set up at DeMotte State Bank or mail it to PO Box 61, Wheatfield IN 46392.

I feel God has put much to share on my heart but that will come in time. Thank you for walking this journey with us. Please, please remembers us in your prayers.


Update

Some know and some do not. If we did not get to you personally and you think we should have, please extend us grace. Laila is in a time of drawing nearer to seeing the Lord face to face. She has not woken up since Saturday night. She is peaceful thanks to the help of our amazing palliative care team from Riley and a local hospice. I think she’s spent so much time fighting that she now doesn’t know how to let go. Pray for her to run into the arms of her savior full force. I have no beautiful Laila smile to share with you but I think this devotion a friend posted suits today. We love and are grateful for you all!


The Little Lilac

I was sitting on my front porch swing this afternoon trying to catch up on my bible reading.  Little moments like that are few and far between right now in the middle of the of chaos caring for Laila, Emma’s end of 8th grade activities, Jackson’s baseball season and RJ’s therapy, homework and karate classes.   Phew, that made me tired spelling all that out, let alone living it!

As I sat there, I suddenly smelled lilac.  I have this beautiful lilac bush right next to my porch by the garage but it blooms and fades away quickly every spring.  Sometimes I don’t even get the chance to smell it.  This year I had watched for it and enjoyed it when the smell was strong and sweet and I even called my mother-in-law, who used to live here, to have her come while she could enjoy it.  But that was a week or so ago and it had since died and the smell that was coming in my front window so strong was gone.  This bit of sweet smell surprised me and when I looked I found one little bloom remained.

That one little bloom had such a strong smell and held on much longer than the rest.   It that got me thinking….. one little thing can sure make a difference in this world.  One small word, kindness, action, can bring so much sweetness.  I think about the way the Lord has used each of my kids in their own special way, not just my life but in the lives of so many others.  And especially as I am watching one of my little bits of sweetness fading, I know that the strength she has will never fade.  The lives that she has touched will never be the same.  The joy and light that she spreads will be here forever.

Thank you little lilac for that reminder today.  Thank you Lord for using your beautiful creation to speak to this hurting momma’s heart this afternoon.  I’m so grateful for the reminder.

Side note:  my kids say they are going to have etched on my gravestone that I was the lady that could make a devotion out of ANYTHING.  One time it was a pile of dirt.  Not such a bad rep to have ;) Thankful for the clear way God gets through my tough mind.


The Tired One

We are finally getting a little bit of a grasp on the new routine here.  We truly have what looks like a fully stocked hospital room and it is pretty crazy.

Laila has been having some good days.  You may have even been one who has been lucky enough to see her out at church and smiling and having fun.  I love that.  I love that you get to see her that way.  I have had people tell me how she looks like she is doing fantastic.  Looks.  Looks can be deceiving, my friends.  Many, many medications are bringing you those smiles and giggles.  I’m very thankful for the happiness but also know that her body is so very tired.

Our reality is now that we don’t leave the house much.  There are too many medications to be given and too much risk for infection to be gone longer than small amounts of time.  Her IV pump is not portable and since all her meds go through there we stay home.  It is also very dangerous for us to be accessing her lines in environments that are not set up for us to be careful and sterile.

So no more school.  That breaks my heart.  Laila loves school and being social.  She loves thinking she has a job as secretary or librarian.

But… This girl.  This girl is still full of smiles when she is feeling good.  A friend heard that she could no longer “steal Crystal’s job” at Wheatfield Elementary, so he came over and asked her to be his new secretary.  He provided her with a binder and notebooks and business cards.  She “works” a lot!  Sweetest thing ever!  It was her favorite birthday present :)

Can’t we all just be like her?  Man, I have so much to learn.  She has a body that is worn out and tired.  She has exhausted all medical possibilities to ever make her body work without constant pain.  But there she is, smiling.  When she has the energy and when the pain meds are working, she lives life to the fullest.  Smiling and spreading joy to all she is around.  She amazes me every day.  I so hope and pray that God gives me one ounce of her strength, one ounce of her joy.  And I pray that you see it too.  Don’t let this go to waste.  Let God use this beautiful little ray of sunshine  to speak strength over you today.  You are loved, important and full of life.  Go live it today.

In John 10:10 Jesus says “The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.”


Not ready yet

I have a lot to say. A lot. But I’m not ready yet. I know a lot of people are worried and wanting an update. It doesn’t make sense that Laila was sent home if she was still sick. And still is. But it does makes sense.

I’m formulating a post over the next few days, just know I’m fielding a million phone calls from doctors, nurses, pharmacists and trying to care for a very complicated girl that I love with all my heart. The days are going by in a blur.

Also know, from the bottom of my heart, that I am so appreciative. I just can’t explain how much awe I feel for how many people this amazing girl has touched with her life.

I’ll leave you with this smile tonight. May it warm your heart and make you remember that our God is a God of miracles. This smile is a miracle. Please believe that.


Isaiah 55:8-9 “For my thoughts are not your thoughts, neither are your ways my ways,” declares the Lord. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.


Going home….. sick

We are headed home. She feels pretty miserable but they can’t find anything wrong with her…. she has been vomiting all day. Pain meds, nausea meds, and all kinds of new equipment to learn and manage. Everything is IV now.

Please pray she feels better soon.

Thanks!


Update Hesitation

Seems like every time I want to write an update I hesistate because things change back and forth all day long. Yesterday morning she was not doing well at all. She was vomiting stool again, very lethargic and out of it. Then she started to come around a little in the afternoon and started talking some and even smiling. Then in the evening she spiked a fever and we couldn’t keep her heart rate down. So I didn’t write any of that yesterday because as soon as I would think about updating, things would change.

Overnight was pretty rough as well. On top of the fevers and pain she has some unusual tremors and shaking. Don’t think it was seizures necessarily but it was scary. They are messing around with all of her medicines right now trying to find the right mix and switching everything over to an IV form. I think the tremors were probably some withdrawal symptoms from some of her other pain and seizure medicines. Scary though. Especially after the large seizures episode we had back in January.

Things were frustrating last night and evening. Orders came through different than doctors had told me, her TPN was wrong, and they are just telling me one thing and then doing another. The nurses have been great in helping me decipher what the doctors are up to. I feel so bad for them when they have to keep going back and questioning.

So with the fevers they drew blood cultures last night to rule out a line infection. Same as last week. This means we will definitely be here until late tomorrow night :( Not that I’m at all ready to go home with her when so many things are going on. But I’m ready for sleep and my hubby and big kids. They are coming here today so that is a bright spot!

Laila is amazing. I honestly have no idea how she is so strong. Having a heart rate in the high 170′s and pain and low oxygen and tremors and she just keeps going. Every time she gets a little relief she smiles and talks. I look at the monitors and I know she is in pain but she just fights through it. Sometimes I feel like giving up and I’m not even the one feeling the physical effects…. but the emotional and mental are hard as well….

I’m having a hard time watching her go through all of this. It’s terrifying and frustrating and heart breaking. How much is too much? This is where my faith comes in. God is holding us so close and honestly the only way I have the wisdom and insight to keep all of this straight and catch so many mistakes in her care is by the grace of God. I have a horrible memory but somehow can do this for her. I’m trusting God to continue guide and show me His plan for her. And most of all for Him to help me have the strength to carry out that plan even when I’m so very weary.

She is so worth it.

1 Corinthians 1:25 For the foolishness of God is wiser than human wisdom, and the weakness of God is stronger than human strength.


Our Little Champ

The before and after picture….

The doctor said the surgery went well. She now has the double lumen central line and he opened her ostomy wider hoping that it will start working better and not block.

The pain was pretty bad so they put her on a morphine pain pump. It seems to be helping.

So far her ostomy has not woken back up yet and there has been no output.

She is such a trooper!

We will be here for a few days and appreciate your prayers.


The Tough Stuff

Disclaimer: This post was written with RJ’s permission and approval

Adoption is hard.  It is not God’s plan A.  Adoption comes from hurt and suffering and sorrow.  God placed these kiddos in the tummy of a mommy and that is His plan A.  Adoption is beautiful and beauty comes from it for sure, but it is definitely not easy.  And older adopted kiddos who have memories and questions… well, let’s just say it can get very interesting.

This blog has been revived over the past year and a half because of Laila’s health and a way for me to get info out without having to answer many, many text messages on how she is doing.  It has been a way for others to cover our family in specific prayers.  But, it was created originally to continue a little blogspot blog that I created when the kids were younger as as we went through our journey of fostering which led to Laila’s adoption, and then RJ’s.

I’ve written many times about the struggles with adopting an older child (search the archives for more info) and a few weeks ago beauty and ashes were brought to me in the form of a cute little Indian boy with questions.  I’d like to share that with you today.

The adoption books and seminars and classes and webinars and on and on all tell you what to prepare for but real life hits and sometimes knocks you off your feet.  RJ and I have struggled to connect on and off for years.  Just when I think we are getting somewhere, one or both of us pushes away again.  You see, mom’s get the brunt.  Mom’s are there all day everyday (in our case).  Mom’s aren’t supposed to fail.  And so mom’s are typically the ones that get the worst behavior out of their adopted kiddos.  All of those classes and seminars tell you that as well.  I host a dinner once a month for other mom’s in similar situations as us and it rings true in some of those ladies too which makes me feel less insane, less like a failure.

RJ goes through ups and downs.  Switching schools was a great opportunity for him to learn to express his feelings of sadness, fear and disappointment in a healthy way.  He did great for a few months but the rough patch came in, as we knew it would.  Comfort levels come and because he stills has a hard time when things get comfortable, he started pushing.  He had several incidents that were just unlike his normal behavior (good patch behavior) so I knew something was up.  Here is where the days of uncertainty come in.  I never know how long this will last and very rarely does he express verbally why or what is going on in his head to make him act this way.  I’m not sure he even knows.

This time it finally came out one morning at breakfast.  The conversation I had thought about and tried to prepare for.  The conversation that has haunted me because I knew when it came I would have no real answers for him.  The conversation that broke my heart.

Quiet, somewhat angry RJ:  What is my birth mom’s name?

Me:  Oh honey, I don’t know.

RJ:  Where is she?

Me:  I’m not sure.

RJ:  Silence

Me:  You know that the police found you and they aren’t sure what happened to you.  They tried to find her but couldn’t.  Do you remember her?  Do you remember what she looks like?

RJ:  No

Me:  I bet she is beautiful.  I bet you look like her.

RJ:  Really?!?

Me:  Probably :)

RJ:  Why didn’t she want me?

Me:  Oh honey, I’m not sure.  I’m so sorry I don’t have an answer for you.  Can I tell you what I think?  From my research on Indian orphans… even though I’m not sure?

RJ:  OK

Me:  You were old enough that someone cared for you for a while.  You were not a baby when they found you.  Many people in India do not have enough money to buy food for their children.  My thought is that your mom loved you so much that she was willing to give you up so you could live.  She left you somewhere for people to find you who could help you get food and a home and live instead of…. dying.

RJ:  Will I ever see her.

Me:  We can pray that someone will share Jesus with her and then I hope that God will let you and I meet her together one day when we get to heaven.

RJ:  I would like to do that.  (returns to cereal and never mentions it again.)

You see, there is so much rolling around in that little mind that I never get to know.  There was another time a few years ago that he was in a really bad patch and he finally ended up telling me that in the orphanage they used to beat him with a broomstick.  So much I don’t know.  He has the best memory of anyone I have ever met.  He remembers vivid details of things we’ve seen and done and that is such a cool thing….. until I remember what his first seven or eight years of his life were like.

This stuff is hard, you guys.  He and I both have a hard time.  I want him to be normal and expect him to be, but with his beginning and his   disability the cards are stacked against him most of the time.  I have to remember that.  I have to remember that his love language is quality time and I have to get past myself and give him that even when to me it seems like a reward for bad behavior.  This is NOT my go to parenting strategy.  God has turned my world upside down with this guy and He is making me into someone new.  I need to be better at this.  For him and for me.

Remember both of us in your prayers this week.  He struggles when he is scared about Laila and so do I.  For him, routine and normalcy are key to him feeling secure and things are anything but normal around here.  I struggle with guilt when I have to be away so much to care for her and his behavior reminds me of that.

Today we were gifted a day together because Laila and RJ didn’t have school and since Laila doesn’t feel well she has been sleeping a lot.  RJ is doing great because he is getting my attention and even helped me write this today.  He wanted me to share it with you.  I’m thankful for today and need to remember to take it one day at a time.

2 Corinthians 5:17  “Therefore, if anyone is in Christ, the new creation has come:  The old is gone, the new is here.”