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.”


A Few Days Rest

The tests results showed that Laila has a narrowing, causing a blockage, close to her stoma site.  This has been an ongoing problem for her ever since she had her ileostomy placed.  She has had three revisions in the past year for the same problem and it has never worked for longer than a few months. Since August we have left a tube sticking out of her stoma to keep it going but that is no longer working and caused everything to get backed up.  That is where the stool was coming from that she was vomiting and the blood was the lining of her stomach because it was so irritated and angry from all of it.  The doctors kind of shrugged their shoulders…. not sure what to do.

So momma bear had to come up with a plan.  Thankfully our own surgeon was there all throughout our stay and he and I were able to bounce ideas off of each other.  He didn’t want to do surgery again knowing that it hasn’t worked in the past.  I wasn’t willing to stop fighting.  I came up with the plan to have him take out the narrowed portion and then put her on a schedule of coming down to have them dilate her stoma often to try to stretch it and not let it narrow again.  This would be A LOT of back and forth to the hospital but I’m willing to do whatever it takes to get more time with my girl.  The surgeon agreed that this *could* work and said he would give it a try.  He also said that if it is working he might teach me how to dilate it myself at home.  I can’t believe all the things I know how to do now.  Crazy!

Surgery could possibly have been yesterday but the surgeon decided that we could do a few things to give her time so we could come home for a few days and spend time with family.  We spent Easter last year in the hospital and he wanted to give us that family time this year.  I’m thankful.

We have also decided to have her central line replaced and changed to a double lumen.  Her current line only has a single lumen (access port) and that has been a problem.  Only one thing can be running at a time and several things are not compatible with TPN (her feedings).  TPN and having a central line is going to be a permanent thing now.  Changing it out is a higher risk for infection but it will also give us what we need to change some of her medications to IV so we can be using her failing intestinal organs as little as possible.

Jack and I also met with Laila’s palliative team again and are thankful for their input and support.  It’s a hard thing to know that things aren’t getting better but we love having people who specialize in this and can just talk us through some of it.

I know a lot of that doesn’t make sense to others who aren’t in the medical field or have been a caretaker of someone medically fragile but I know others are interested and try to understand so I figured I would spell it out the best I could.

So…. we are home.  We are thankful.  We are nervous.  We are sad.  We are tired.  We love Laila.  We love each other.  We trust God.

We will spend the next several days loving on each other and doing life.  Wednesday night or Thursday morning we will head back to Riley and will hopefully only be there 4-5 days.

Pray us through this would you?  Pray for strength and understanding.  Pray that this plan will work… at least for awhile.  Pray for our other three kids and what this does to them.  Never forget how hard this is for them too.

Thanks for all your love and support.


Zero to Sixty

I’ve had a post rolling around in my head about adoption and RJ and tough stuff and birth parent questions. I thought that would be my next post but apparently the small one decided she needed more word space first….

Laila is always, always keeping us on our toes. She went from fine yesterday morning to having me packing bags for a trip to Indy to the ER by 2:30 in the afternoon. She went from ok ostomy output to zero output for almost 24 hours. Crazy stuff.

When her ostomy stops working eventually all that yuck that goes through her intestines has to go somewhere so it backs up into her stomach and after time has to find a way out. In walks vomit on the scene.

Vomit is a way of life in our house. Wow, that sounds super depressing. True story though. So it doesn’t usually concern me or those who care for her much but something was just different and off yesterday.

I got on I65 headed for Indy and when I got almost to Jack’s work exit I felt a strong urge, almost a physical pull to get off the highway and pick up Jack. I had hardly got off the highway and Laila started vomiting again. I had to try to catch it in a bucket while holding her hair out of the way, driving a car and putting it into park barely off the side of the road. Thank you Holy Spirit, thank you God for your hand on me to get off the highway.

So while it is not convenient for Jack to travel with me and we had to juggle the other three with friends and family, we went together.

The ER knew we were coming so we got right in. Then the vomit turned very dark and started having blood in it. Wretching after wretching, watching our pale little girl suffer….. this will be another vision that haunts me I’m sure. She looked like she was dying…. again….

The night was rough and carried into the morning. Surgery and GI teams consulting, tesing and guessing and we’re still not sure. The vomiting has settled down but her heart rate is hanging high and her pain is not controlled.

Jack and I had a meeting with her palliative team today. I’m thankful he was here. We have a lot to think and pray about. This is so hard watching our girl suffer. So hard. Like crazy hard.

As always God has met us here and is giving us glimpses of Himself and His love for us. I cried and begged Him not to make me watch my child suffer and all I could hear is “I know.” How appropriate. How appropriate that I would be able to fall to my knees before a God who can say “me too.” How appropriate that this time of year is when I would have that conversation with Him. We do not have a God who can not sympathize with us. He is so good. Even when I don’t like His plan and am terrified and act like a two year old, angry one minute and wanting to crawl in His lap the next minute; He is good. He lets me cry and question and He whispers small meanful phrases to me hidden in His word.

Hebrews 4:15-16 For we do not have a high priest who is unable to empathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet he did not sin. Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.

Please keep praying for Laila to have the pain subside and the vomiting to be over. Pray for answers or for me to find peace with no answers. Please pray for my anxiety because every scary, out-of-the-blue episode makes me want to never leave her side in fear. Pray boldly, dear friends.


My Beloved

It’s 4am and I just tearfully said goodbye to my husband for a week.  In an unfortunate turn of events for one of our friends, a spot opened up for Jack to travel to Haiti on a mission team.  It was very last minute but all the details lined up and God made very clear this was His plan for Jack.

I’m so sad.

I love my husband.  I not only love my husband, I actually like him.  Like, like him and he is my best friend.  This week marks 18 years since we met and there have actually been few times where I haven’t liked him.

I am so lucky.

My husband is amazing.  For real.  I don’t talk about him enough.

I have a man who prays over me, out loud, every morning before he goes to work.

I have a husband who does dishes and tucks kids into bed every night.

I have a husband who draws up countless medications before he goes to work so it is one less thing I have to do with Laila in the morning.

I have a husband who reads devotions and prays with our boys every night.

I have a husband who is raising up boys who will be amazing fathers and turn into amazing husbands because they have a beautiful Christlike example to follow on a daily basis.

I have a husband who can’t resist the plea of one tiny little girl who begs him to lay in her bed and snuggle her every night.

I have a husband who can tease his lovely teenage daughter but also dries her tears when she is so misunderstood by others.

I have a husband who is willing to follow the call of the Lord even when he has his own tears and is so worried about leaving us.

So….. I’ve been saying that I’m jealous of him this week.  We have such a heart for missions and we used to go on trips and plan trips for people and travel and adventure and see beautiful people from other countries and share God with them……. together.  But as I sit here and focus on Jack and our life and our little mission field here in our home that God surprised us with….. I’m just happy for him.

Thanks for walking with me as I counted my blessings this morning.  It helped :)

Please keep the whole Haiti team in your prayers this week.

Matthew 28:19-20 Therefore go and make disciples of all nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit, and teaching them to obey everything I have commanded you. And surely I am with you always, to the very end of the age.”


For Better or For Worse

I’ve been spending the past few weeks feeling…. weird.  Trying to capture our new reality while also having many memories of this time last year.  My amazon photos app keeps reminding me of what pictures I took this time last year….. like this one

March 10, 2016 was one the scariest days of my life.  I have memories and images in my head from that day that still haunt me.  It was the day that I thought for sure I would soon bury my child.  There is definitely a lot about that 34 day hospital stay that was scary but this was the day that I raised my palms in the air and offered up my Isaac (Laila).  I was terrified and yet beautifully willing to allow the Lord to take her.  I spent a long time riddled with guilt about that, feeling like I was willing to give up on her.  I hid it and let it eat at me.  Thankfully I had a good support system in place and through sharing with my CR sponsor, friends and recently some counseling I have allowed the Lord to replace the lies of the enemy.  I know that I was placing her rest above my grief.  I still battle lies but I’m a warrior and can handle it with my gracious Lord.  I never wrote about it at the time.  Didn’t know if I ever would.

I also have recent images that roll around in my brain……. the ambulance…… the palliative care team walking into her most recent hospital room….. panics on nights when she actually sleeps wondering if she is still alive…..  Fear knocks at my door on a daily basis.  I battle this with truth in God’s word, sharing with accountability partners, prayer and counseling.

In some ways things are worse now than they were a year ago.  Last year there were still options.  Last year there was a different kind of hope.  But….

This year there is a smiling, silly girl.  As I read back through entries it is hard to even imagine how long I went without hearing her laugh or seeing her smile.  Those things get me through the day.  She has gone to school more this semester than she has the past two years during second semester.  She has been the healthiest (besides GI issues) that she has been really since we’ve known her.  No pneumonia, no flu, no ear infections, no UTIs.  That is truly amazing.  The song “Count Your Blessings” comes into my head A LOT!

Hope has constantly been a problem for me.  I self-protect by not wanting to hope so then I think I won’t get disappointed.  Recently I discovered a song by Tenth Avenue North called “I Have This Hope.”  It has lifted the veil I have had over my eyes for months.  God revealed to me that I don’t have to hope for details about Laila.  I have to anchor my hope in God alone and His promises in scripture.  I don’t have to hope for healing or new medicines, or cures.  Those things may be fine for someone else but I know they are an opening for the enemy in a spiritual battle in my mind.  I choose just to focus on the fact that God will never leave us or forsake us (Deut 31:6).  I choose to focus on the fact that God  will make good out of all things (Romans 8:28).  I focus on God redeeming the years the locust eat (Joel 2:25).  I claim the promise that the Lord is with me and will uphold me wherever I go (Isaiah 41:10).  And I am constantly reminded by our sweet, gracious Lord that He sees me (Gen 16:13).

That last one I literally wear around my neck as a reminder.  It has been a common theme in my life this past year.  I read it in my blog entries and I hear it echo in conversation after conversation.  I ask God to show me something every day to remind me that He sees me and what we are going through and guess what…. He does.  And then I praise Him for it and share these little victories and this enlightenment with others.  He truly sees me and loves me and weeps with me.  He is truly amazing.

I pray you remember that He also sees you today.