I'm So Scratchy!!!

We've been pretty busy over the last few weeks, and thankfully, time has passed fairly quickly.  Pretty soon, I'm going to start counting down the actual days until the halo comes off.  I haven't really wanted to do that quite yet, just in case the doctor tells us that he has to wear it longer...ugh.  Over the last couple weeks, we've had a few rough nights with painful pins, and yesterday, Ian slipped in his socks and fell flat on his back, landing on the pins.  To be very honest, when those things happen, I have a love/hate relationship with the halo.  I am grateful for the protection it offers, but I hate how it hurts him and how I feel like I've been living with a pit in my stomach for months because of it.  After the fall, there were LOTS of tears, and I was trying not to freak out and cry myself.  It's times like these that I am extra grateful for my wonderful husband who brings both compassion and rationality to these situations.  He checked the halo for movement (which there was a tiny bit) and the pin sites for bleeding (which there also was), but he assured me that he was ok and reminded me that we're seeing Dr. Fedor on Monday.

Distraction often works to calm Ian, so I got him the iPad and we found a game he likes.  He was able to calm down, and I went to get ready for the day.  My mind is very busy, and I find that when I'm doing menial tasks like getting dressed, cooking dinner, laundry, etc., my mind seems to replay somewhat significant (or difficult, or regrettable) life events over and over, and often times, I don't even realize it.  As I got dressed, I was still thinking about what had just happened and how I had no control over Ian falling or the pain and fear he felt afterward.  It brought me back to one very dark night I had in the hospital with Ian.

Jason was able to stay with us in the hospital the first night after surgery, but the second night, he had to drive home since he had court (or a meeting) in the morning.  I understood and was feeling fairly confident being alone with Ian through the night.  The night after surgery, Ian slept several hours at a time, and we were still in the PICU, so there were lots of nurses around to help.  Well, I had no idea what kind of night that was going to be.  I got him pretty much settled in around 9 and he fell right to sleep, so I laid down on the little chair/bed thing they had and tried to get some rest.

Sometime around 11, he woke up, and he just started crying.  I tried to calm him, but it wasn't working.  He was only half awake, but he was becoming more and more frantic by the minute.  I called the nurse after about a half hour, and she tried to help, but there was really nothing she could do to help - and all the things they do in the PICU - like taking your blood pressure, temp, and checking the IV every 30 minutes wasn't helping!  After about 2 hours of inconsolable crying, the nurse paged the doctor on call, who came in and said really the only thing they could give him to help him calm down was possibly Benadryl.  At that point, I was willing to try anything.  He'd had Benadryl before without a problem, so they tried it.  After a few minutes, I knew something wasn't right...he had become inconsolable and was so adjitated that I hardly recognized my sweet boy.  He kept screaming, "I'm so scratchy!" over and over again.  He had literally pulled out half of his IV, he was pulling on his halo, he was going crazy trying to scratch, and it was so itchy under his vest where I couldn't reach.  I tried to call Jason over and over, but no answer!  Now, I was freaking out...trying to hold it together, but it was the middle of the night.  The nurse paged the doctor again after a couple hours (it was now about 3AM), and she said that sometimes Benadryl through and IV can cause itching.  Great.  The nurse was very sweet and helped me try to soothe him by giving him a sponge bath and applying warm lotion, but nothing helped.  The entire time, I was just pleading with God to make this stop.

Finally, when the nurse left, I found myself straddling Ian to keep him from pulling on everything (mostly the halo and the IV) and I just started praying out loud for him - and for me.  I could no longer hold back tears and so even though I didn't want him to see me crying, I couldn't help it.  I just cried out to God on Ian's behalf, and when I had no more words, I sang him songs - Trust and Obey, Tis' So Sweet to Trust in Jesus, and Holy, Holy, Holy - his favorites, which I can no longer listen to or sing without bursting into tears.  Almost immediately, and for the first time in over 4 hours, Ian was calm, his body relaxed, and he actually fell asleep.  He slept for about 30-40 minutes then woke up, and it all started again.  I prayed over him again and after a few minutes, he fell asleep.  This repeated several times through the night until about 6:30AM, when he fell asleep for several hours.

Wow...even though it's been months, thinking of that night brings me to absolute tears.  It seemed so strange that praying over him (literally) would bring such peace to his body and heart.  Obviously, God was at work in Ian's heart and in mine.  Looking back, I can see that although I felt completely alone, I was never alone!  What a tangible way to experience the sweet gifts of His love, His grace, and His mercy...right before my very eyes.  The Lord doesn't always work that way, but I'm so grateful for the kindness He showed us that night.  When I remember that night, I think it may have been the most difficult night I've ever experienced, and yet the Lord is using that night over and over again in my life to remind me that He is part of this whole ordeal.  He is sovereign over every single detail of my life and He can be trusted - even with my deepest fears.

I know I've shared this picture before, but it was from that night, and it is such a picture of God's faithfulness and mercy in this storm!

My Fear in the Storm

Fear.  This is something I struggle with daily.  I have a myriad of fears, to be honest, but my most recent battle with fear relates to Ian (surprise!).  I completely realize that my fear and worry do not help my current situation - or any situation, but the worst part about this struggle is that it's a battle with my own sin, and it separates me from God.  It is a daily battle to bring it back to Him...the only one who can calm my fears and bring peace to my heart.

On Sunday afternoon, I was carrying Ian and I noticed that I could hear a rattling sound coming from the vest and/or halo.  I tried to ignore it, so I didn't say anything to him or even investigate further, although I secretly worried.  But later that night, when I was putting Ian to bed, he tells me that his halo has been "clicking."  Great, it wasn't just me who had been hearing it.  I told Jason, and he immediately checked to see if there was any movement of Ian's head in the halo, and sadly, there was.  I knew I'd have to call the neurosurgeon in the morning to let him know.  I tried to find calm, reminding myself that he was acting fine.  Yes, he was complaining about the clicking, but he wasn't having any pain at all.  I actually put off calling the doctor's office until Monday afternoon.  I had to leave a message and the nurse called me back on Tuesday.  She wanted more information and she was going to run it by Dr. Fedor (our beloved neurosurgeon).  She said she'd probably be calling me back the next day (Wednesday) after the doctor had time to respond to the message.  I was feeling better...she wasn't panicked, and was simply going to let him know.

Not ten minutes went by before the nurse called me back wanting to know when we could come in.  Apparently, she had sent the message to Dr. Fedor, and he responded RIGHT AWAY, asking for us to come in ASAP.  He wasn't going to be in the clinic on Wednesday, but he was going to come in (from surgery) to see Ian as soon as we could get there Wednesday morning.  Let me just say that at that point, I started freaking out (inside) and my mind went all sorts of places that involved fear and worry.  Why was this such a big deal?  He's coming in just to see Ian?  Will he need surgery?  And on and on and on...(you get the picture).  I told Jason, and immediately I started to cry.  A while back, I shared how I feel like I'm always on the verge of a meltdown these days, and this just pushed me over the edge.  But, let's just step back for a minute...nothing had even happened yet!  All I knew was that the doctor wanted me to bring Ian in the next morning.  I knew that I had to bring my fear to the Lord.

Tuesday night, we decided it would be best for Ian and me to go stay overnight at my parent's house in Claremont so we would be closer to LA.  After everyone went to bed, I knew I needed to spend some time praying and reading God's Word.  The fear was overwhelming at that point, and honestly, I don't know why.  It wasn't a huge deal, but it was really affecting me.  I literally felt sick.  As I sat down, I opened to where Philippians 4:6-7 were clearly highlighted - Do not be anxious about anything, but in everything by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God which transcends all understanding with guard your hearts and MINDS in Christ Jesus.  I prayed for the Lord to give me the strength to trust Him with every detail of my life - including Ian.  As I flipped through His Word a little more, I kept coming across verses about peace.  Colossians 3:15 Let the peace of Christ rule in your hearts...you were called to peace and John 14:27 Peace I leave with you; my peace I give you.  I do not give to you as the world gives.  Do not let your hearts be troubled and do not be afraid.  Wow!  He wanted me to be reminded to see His peace instead of being a slave to my fear.  As I went to bed, I did have His peace and comfort.  I was actually able to sleep - a little - as a side note, I do not recommend sharing the bed with a very affectionate four year old in a halo...it's downright dangerous!!

Storytime with Papa

The next morning, we made the drive to LA (where thankfully, Jason was able to meet us) and saw Dr. Fedor.  I truly had peace.  The fear that was overwhelming me just a few hours earlier was gone.  We were so grateful that the surgeon was able to tighten the screws and make a few adjustments, and all those things that I so greatly feared were not coming to pass.  It was painful for Ian, and that is always so heartbreaking, but he was feeling much better after a few minutes and we were on our way.  Dr. Fedor told us that if this happens again, he will have to do another surgery to fix the halo (since we're only 3 1/2 months into the 6+ months he needs to wear the halo).  And...there it was again...the fear started creeping back in.

Waiting to see Dr. Fedor

 I realize that this is a constant battle for me.  It's a battle for many women (if not all) in some form or another.  This situation was a great reminder for me to BRING MY FEAR TO THE FEET OF JESUS!  My dad told me something a while back that has really stuck with me.  He said, "When you feel afraid and worried, that is the Lord reminding you to give it back to Him."  I have to do this over and over and over every single day, but He is always faithful and He wants me (and us) to have His peace.  The battle against fear and worry is one worth fighting.  Especially in times when He is calling us closer to him, because our fear can cloud our minds and keep us from leaning into Him.  I'm a slow learner when it comes to things like this, but I'm forging ahead, daily (hour by hour and minute by minute) praying that I'll trade my fear for His peace.

Ian asleep on the way home...sweet boy.

Sleeping With A Halo

Here's a question that people ask all the time..."How does he sleep?"  Well, that's a great question.  Let me say that he definitely doesn't get the quality or quantity of sleep that he got before the halo, but good sleep is possible.  I also had that question before we left the hospital, so I asked the neurosurgeon and the halo manufacturer representative, and both told me the same thing...he can sleep however he can get comfortable.  That meant on his back, side, or stomach!  They also told us that we could put a little pillow behind his neck because it might feel a little weird to have your head suspended while you're laying down.  We never did that (seemed like the space was a bit small for that), but I think when you're four, you kinda just go with the flow more than you would if you were older.

When we got home, I spent the first few nights sleeping on his trundle bed...terrified that he'd fall out of his bed.  Then I had a revelation (ok, so I was tired and wasn't thinking!), HE should be the one sleeping on the trundle.  That way, he was only inches from the floor!!  Since then, that's what he has done, and I don't have to worry about him falling out of bed.  He thinks it's cool that he gets to sleep on the trundle, and I can rest at night.  I also put a monitor in his room so I can hear if he needs me, since he can't come down the stairs alone (he likes to use the monitor for other things too, like serenading me and telling me that he's hungry during his nap, lol).  I asked him today what he would say to another child in a halo in regards to sleep, and he said, "Well, you can sleep on your back, or your side, or your tummy, but don't fall out of your bed."  Just for fun, I had him demonstrate how he sleeps so you can see how it looks :).

Here he is sleeping on his side...

On his tummy (this freaked me out until I realized that he can breathe because his face is elevated by the halo)...

 And my personal favorite, but the position he chooses the least, on his back...

When your head hits your pillow tonight, just be thankful that it does just that - touches your pillow!  I am so thankful that by God's grace, he does get the rest he needs!

Finding Forgiveness

If I would have written this post last week, it would have had a very different feel.  Last week, I was looking for forgiveness in a much different way than God graciously gave me this morning.  What a blessing...what an amazing and unexpected gift.  Today was truly an example of God's goodness in the storm.  See that picture there at the top?  That is my grandma.  I have never really had much of a relationship with her.  Very long story short, she and my dad didn't have a strong relationship, and so I just never really knew her well.  I saw her at Christmas and maybe one other time during the year and other than the birthday and anniversary cards that she so faithfully sent, I didn't have much contact with her.  When Ian's accident happened, months went by and I started getting upset that she never called to see how he was (okay...I see MY stubbornness in all of this now, but I didn't see that last week).  Last week, my cousin invited me to her son's baseball game because my grandma was going to be there too, and thought she'd like to see me.  I agreed to go, but my heart just felt so yucky!  Here she was, coming to a baseball game for my cousin's son (in the same town where I live) and yet she didn't call to see us.  I felt so hurt, and although I went to the baseball game, I was on the verge of tears almost the entire two hours I was at the game.  Why was I feeling so emotional about this??  I got in the car and thankfully I was alone, because I burst into tears!

At the time, I just didn't understand why I was feeling so deeply distressed about everything.  So, I prayed and prayed and in my devotional time during the next week, I kept coming across passages about forgiveness.  Ugh.  Did God want me to forgive her?  I knew I certainly didn't feel like doing that.  As days passed and God kept bringing me the same words, I realized that forgiveness was EXACTLY what He wanted me to offer to my grandma.  You see, growing up, my grandma was not a believer.  She was far from God and when my dad came to Christ, she thought he was crazy - a Jesus freak, I'm sure.  But...about ten years ago, my grandma found Christ, and He really changed her.  The Lord was at work in her heart, but I was still holding a grudge.  She and my dad had begun to mend their relationship - I knew he had forgiven her and was making an effort to have a closer relationship with her.  I, on the other hand, had ideas of what kind of grandma she was supposed to be yet wasn't.  In my sin, I was refusing to forgive her (and seek forgiveness from her).  Even this morning, I was apprehensive about spending four hours with her.  To be honest, I was really doing it for my dad.  I didn't know what we would talk about, and what if I got emotional again and started crying?!  So, this morning I prayed again that God would give me His love for her and show me how to "feel" like I could forgive her.

When she arrived and the door opened, God gave me an amazing gift.  I felt an immediate and overwhelming love for her, and as I hugged her, I thanked God.  I can't explain it, and it doesn't even matter how it all happened.  I felt complete love and forgiveness.  It truly flowed from my heart.  Completely unexpected and yet so beautiful.  We were able to have such wonderful conversation - I was able to ask for her forgiveness and through tears she shared how much she loved me and how she felt so sad about our relationship up to this point.  I got to hear how she got saved and how she lovingly prays for the unbelievers in our family.  She told me how she and many, many ladies at her church had been faithfully praying for Ian after his accident.  Wow!

I am so grateful for this day and for the relationship I can now have freely with my grandma.  I know she loves me and my kids.  She WANTS to be part of our life and I want her to be in our life too!  It is only through Christ that our relationship was restored.  Saying goodbye, she gave me a huge hug and told me how much she loves me and I know she meant it.  God showed me her beautiful heart, and it was full of love for Him and for me.  Wondering why I'm sharing this?  Just thought that maybe someone reading this might find encouragement to pray about a relationship that needs to be restored.  Even if we don't "feel" like it, God can give us His love for others, and it is true and real.  His love for us is so wide and deep and long and high, and He gives us the grace and strength we need to share that with others.

Another way Ian's accident has brought us blessing and a deeper relationship with a grandma I love and care about! For you, oh Lord, are good and forgiving, abounding in steadfast love for all who call on you.  - Psalm 86:5