Family Vaca!

Gabe has been improving so much lately.  We’ve got so much to be grateful for.  But with the up and down nature of topical steroid withdrawal, we don’t take it for granted, because we know he could flare again.

(Yes, we dance in public!)

I’m just very, very thankful.

We have a family vacation planned for later this week and we are tentatively on track.  Up until today we have been debating having my husband stay home with Gabe.  But we really need a vacation.  Gabe really needs it.

And thankfully, he has been improving by leaps and bounds.

Friends, could you please pray that we would be able to all go and that God would keep Gabe healthy during the trip?  Please pray for Gabe to have a wonderful trip and forget about his condition for the period of time.  Thank you! 35645578_10160622787290074_285025338411450368_n

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Waiting for the Son

My son missed school Monday for another doctor appointment.  The previous round of antibiotics had failed to clear up an increasingly serious staph infection.  He did find a “diamond” in the parking lot though, so that made it all ok 😉 20180423_101234.jpg

While we waited to see the doctor he asked about his birth story.  Well, he asked if he had ever had a medical emergency that was life threatening and then I told him about his dramatic entrance into the world.

It was a chilly January morning and my husband had left for work, which at the time was a 50 minute commute.  I was laying in bed with contractions (I wasn’t sure if they were the real deal or not) when my water broke.  By the time my husband rushed back home to drive me to the hospital, I was in full on, active labor.

As we drove to the hospital I saw the most beautiful sunrise.  I thought, in the calm between contractions, “what a beautiful day to be born”.  By the time we got to the hospital I was almost fully dilated and all the jostling about caused the umbilical cord to prolapse (he was still in, the umbilical cord had left the building!) so with every contraction his oxygen supply was being cut off and his heart rate was dropping.  The room filled up with people ready to do an emergency cesarean section, as his life was in very real danger in those tense moments.  But I was able to push him out in a record 4 pushes.  Pushing for his life really, not to mention the fear of being cut open.

He was born blue and motionless.  They whisked him away to revive him with oxygen.  He was totally fine.  When we were cleared to visit him in the nursery I remember every other baby was wailing away but not Gabe.  He was looking around, very still and quiet, just taking everything in.

I think so much of life is like that.  Joy and pain intermingled.  The joy of a child but the pain in bringing forth new life.  shutterstock_112249904

When we’re weak and hurting the enemy likes to whisper in our ear, “you’re hurting and alone because God doesn’t really love you.  You’ll always be a failure.  You’ll never succeed.  I own you.”

What the enemy doesn’t want us to know is that the pain we feel is often the birth pangs that precede new, fresh life bursting forth- if we don’t give up in the dark stretches of the night.  We have a birthright.  We are true heirs.  Nothing can separate us from the love of God that is in Christ Jesus.

God is writing a story with our lives.  There will be twists and turns, pain and discouragement… but also beauty and marvelous light breaking forth.

“But for you who fear my name, the Sun of Righteousness will rise with healing in his wings. And you will go free, leaping with joy like calves let out to pasture.” Malachi 4:2

Refuse to give up or lose faith.  We know who has the final say.  We know who writes the final chapter.

“Lord Jesus, thank you that we know that you have NOT left us here on Earth as orphans.  You promised that you would never leave us nor forsake us.  We thank you that we never have to carry our heavy burdens alone.  We pray that your will be done on Earth as it is in Heaven, and most especially- in our own Hearts.  May we honor you name with our lives. Amen” 

Growing Up

I guess I’ve been feeling very nostalgic lately.  My oldest child, Michael, is almost 13 and…we’ll just say he’s rapidly changing.  Everyday when my facebook memories pop up and I see how he looked just a year ago, I am blown away by how much he has changed in just a year.  He’s shot up like 4 inches, gained like 15 pounds and is losing his boyish look.

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Look at that sweet face!
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Same two kids, five years later.  Now he’s too cool to smile.

He’s growing up.  He’s changing.  Most of these changes are involuntary, and the spring forth (often in the most awkward of ways!) like a force of nature.  Growing up is a part of life.  But growing spiritually is completely different.  It doesn’t just happen.  We don’t wake up one day spiritually mature by accident.  It’s a process.  It takes time, experience, and cooperating with God through the work of the Holy Spirit.

 

God wants us to grow up.

“When I was a child, I spoke and thought and reasoned as a child. But when I grew up, I put away childish things.” 1 Corinthians 13:11

This past year has been one of growing up.  Of throwing down the gauntlet.  For a long time I was struggling with my doubts and really walking the fence.  No wonder I felt so unsure and struggled so much to obey God.  I made the decision that I was going to pursue God, no matter what.  Daily I was going to seek, daily I was going to submit my will to His.

“My heart has heard you say, “Come and talk with me.”
And my heart responds, “Lord, I am coming.”…Awake, harp and lyre! I will awaken the dawn.” Psalm 27:8, 108:2

I’ve got my alarm set for 5:30.  I’m spending an hour a day with God in the morning.  It has been completely changing my life.  No more waffling.  This is my commitment and I will carve out the time.  I want to grow up.  I want to be a mature believer that God can use mightily.  I want to go from the spiritual, infantile milk to the spiritual meat described in Hebrews 5.  I don’t want to live my life in spiritual diapers.

I want to be full of the Word, full of the Spirit, I want to advance the kingdom of God with every day and every breathe that I take.

“Lord, we thank you that you love and care for us regardless of our state or level of maturity, but we also know that you want us to grow up in the things of God so we can accomplish the plans and works you established before the dawn of creation.  help us to get off the fence, and to love you with all our hearts, minds, and strength.  Thank you that in living for you we find abundant life and you fulfill the desires of our hearts. Amen.”

Prayers and Doo-Hickeys

I feel like God often speaks to me in themes and the theme of the month has been on prayer.

It really started Thanksgiving went I went to visit my Grandma Judy for Thanksgiving.  My grandma is basically a saint in my eyes.  When I was a young teen mom she came to my rescue and worked her grandma magic many times at the drop of a hat.  I don’t get to see her enough because she lives a couple hours away.

So when she invited us for Thanksgiving of course I said YES (she is also an incredible cook….) but when the day rolled around my daughter, Shiloh, was on the tail end of a cough.  Which gave me pause because my Grandma and Grandpa are both on oxygen for their emphysema.  They also care for my Great Grandma who is 91.

I texted my grandma whether or not I should still come with a sickish kid and she said yes.  So we went and had a great time….. until that night when we got home and realized Shiloh had a fever and was getting sick with something else.

The next day I started coming down with the flu.  I felt absolutely terrible with worry that I am may have exposed my grandparents to a sickness that would be far more devastating for them than for us.

I really entered some fervent prayer.

In my praying I felt very undeserving.  I hadn’t been seeking God like I should…I felt like that kid that makes that collect call home on Father’s Day.

I said, “Lord, I don’t deserve this answer to prayer but please….do it on account of everything Jesus did for us on the cross.”  At that moment it dawned on me why we finish every prayer with “In Jesus name”.

See, we always enter prayer undeserving.  Whether we feel it or not.  It’s best to just get that out there.  We can’t possibly earn the right to “deserve” anything from God.  It’s just all based on his grace and goodness towards us.

“The effectual fervent prayer of a righteous man availeth much.”

I had to bust out the Old King James for that one.  Our prayers are so powerful.  Especially when we double down with fervency.  “But I don’t feel very righteous.”  Yeah, I don’t always float around on a cloud of happy, holy emotions either…but-

“God made him who had no sin to be sin for us, so that in him we might become the righteousness of God.” 2 Cor. 5:21

In Him we have access to the righteousness of God.  That’s why we ask that He answer our prayers in the name of Jesus- the name above every other name.  So when Satan tries to discourage us from praying we can tell him where to go because through Him we have access to the throne room.

My grandparents didn’t get sick.

Also, my oldest son has been doing really well.  I’ve been getting glowing emails from school.

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We called it his “doo-hickey”

And we witnessed nothing short of a miracle this morning…. my son Gabe has had a very troublesome blood vessel protruding from his cheek for months.  Almost daily he would accidentally scratch it and it would bleed like crazy.  It had grown and grown so I made an appointment to have it lasered off.

That appointment was supposed to be today.  I say supposed to because I cancelled it.  A giant scab came off his cheek and revealed that the vessel (which had been protruding quite a bit) had gone back under the skin and was healing over.

I had been praying that God would heal it so that we could avoid another traumatic visit to the doctor, and He did!

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Doo-hickey no more!

 

 

 

The Sunrise

My son, Gabe won student of the month at his school.  The theme was “courage”, which I thought was extremely fitting!

His school had an awards ceremony this morning at 8 am so we had to wake Gabe up way earlier than usual to get him there.  We couldn’t tell him why, since it was supposed to be a surprise.  We usually let him sleep until 9 and get him to school around 10:15 after a bath and various treatments…se we all had to get up pretty early to get him there on time.

As we were about to head out the door we saw the most beautiful sunrise.  Because of his sleep issues, Gabe hasn’t seen a sunrise in a long time.  He stood at the window and marveled for a good ten minutes. 20171201_071752Something about the sunrise inspires praise.  It’s a little bit of glory breaking through the bleakness.  It’s the light cutting through the darkness.

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The ceremony was pretty brief and there were a lot of proud parents there but I’d doubt that there were any more proud than we were.20171201_115819  For me, this moment represents so much.  At one point I told Gabe that he was so brave.  He said, “but Mom, I’m scared a lot.”  I said facing hard things and not quitting makes you brave.  If we never felt afraid we wouldn’t need courage.

God is faithful.  He promised to never leave or abandon us.

“Weeping may last through the night, but joy comes with the morning.” Psalm 30:5

A Good Day

Yesterday was a good day.

My little girl turned five on Thursday and my mom and step dad came out last night.  They gave her possibly the best gift for her- a gumball machine! 18519821_10158791140855074_8977889329133441059_n Shiloh is a bit obsessed with gum so it’s perfect for her.  Gabe had a good day too.  His little friend came over and he got to play and have fun like a “normal” kid for the first time in a loooong time.  Then he felt up to playing outside with another friend for another hour and a half.  Lots of giggling and running around.  It made me so happy because since we quit topical steroids nearly three months ago he has been going through hellish withdrawals and had many days where he had to carry him because he was too weak and in too much pain to walk.

20170519_182541So he had a great day and got to have cake and ice cream!!  You can see there is still some redness and scabbing on his face.  But he has come so far from these days…  20170225_083718   I got another gift as well.  Gabe had been upset about getting disciplined by his dad.  He was really pouting but I went up and cuddled him anyways.  He said, “Mom, I like being around you because you are always really happy.”  That meant a lot to me because I have really struggled with depression but I don’t want it to affect my kids at all.  I’m so glad Gabe doesn’t see that.

 

Spring, Sadness, Hope

I watched this video yesterday and broke down crying.  It pulled on my heart strings because I know exactly how each of the moms feel.  You struggle privately and have to put on a brave face for your kiddo.

Going through TSW is incredibly isolating because it isn’t a well known condition.  People have never heard of it.  Whenever I post updates or pictures I always get people saying things like, “OMG!  That’s an allergic reaction!”  or “coconut oil took care of my small patch of eczema!”  Insert head-slap here.

Also not particularly helpful is reaching out to the mother of a sick child….trying to sell them something as a MLM distributer.  We’ve tried every lotion on the planet at this point, I’m sure yours isn’t going to be the magic bullet that will end his suffering.  But….um thanks for offering??

Or posting progress pictures.  I always point out that’s he still has a long way to go.  But still people “be like” Hallelujah!  He’s finally healed!!  Um…slow down.  He’s still very much suffering and going through this.  I just like to post pictures when there is any progress to encourage myself and let everyone else know how he is doing.

Speaking of that, he has come a long way.  When you deal with something like this it is easy to fall into hopelessness because it just goes on….and on.  He’ll make major progress and then flare again.  Our hopes will rise, then get squelched.  But I know every single day we weather brings us one day closer to him being healed.

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This was about 1 1/2 months ago.  Yep, RSS is that horrific.
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That’s him now.  Not healed but making progress!

At the moment he is flaring on his face pretty badly.  He doesn’t want to leave the house, because he is so embarrassed.  He’s lost weight off of his already very skinny little body.  In spite of seemingly eating 24/7 he is very thin and his clothes hang off of him.

I also believe he is healing on the inside too.  His organs became steroid dependent as well.  Every morning he has a hard time getting going.  We need to carry him out of bed, get him breakfast, and then bathe him.  I still need to wash all his bedding every single day.  Because every night it gets bloody and crusty and covered in his dead skin.

We are hitting this thing from every possible angle.  Probiotics, vitamins, homeopathy, bone broth, garlic, sea salt….just every thing we can do to help him.

That’s been our focus and it’s really brought us all together.  I feel closer to my husband than ever.  I thank God for our solid marriage.  He has been my partner in this 100% and is so quick to sacrifice for his family.

Most days we are doing pretty good considering.  When you’re going through a long term crisis everything else get’s backburnered.  We barely celebrated Easter.  We haven’t really been able to go to church in ages because it takes so long to get Gabe going in the morning.  I was ok with that until I drove past a cross with ribbons billowing in the wind the Monday after Easter.  I felt an unexpected tidal wave of sadness at not being able to celebrate my favorite holiday the way I would have liked.  It threw me into a bit of a depression for the rest of the week.

But I know that next year will be totally different.  Next year we will go all out for Easter.  Next year we will properly celebrate our Anniversary.

We know that our faith has carried us through this and also all the many prayers offered up for Gabe.  Thank you everyone for your continued support and prayers!!