Face like Flint

I just got kicked out of an eczema support group on Facebook.

I was acting as sort of an awareness raising vigilante for the dangers and prevalence of topical steroid addiction amongst those who suffer with eczema.

Like, “LOOK!  Guys I have the answer.  You can get completely better!!  Your steroids have been causing your worsening condition all along.  Now you just need to go through this hellish withdrawal!!”

Obviously I wasn’t met with much enthusiasm.  The people who administrate the group are familiar with TSW and for whatever reason, have decided against it.  Not only that, but because of the suffering associated with it, they label it as “dangerous” and “misguided” and the people, like myself, who try to sound the alarm, are promptly booted from the group.

My reasons for wanting to warn people is simply that I wish someone had warned us before our level of dependence on steroids got as bad as it did.  We could have avoided so much pain and suffering for our son.

But the road is a hard one, no doubt.  And many try for a time, before going back to steroids and concluding that TSW doesn’t work.

I’ve gotten some unexpected feedback sharing my blog within my TSW support group.  People commending my husband and I for doing a good job.  It is great, in a sense, mostly because it’s vindication.  When we entered into this, it was going against medical advice.  It was going it alone.  It was entering into some pretty bleak and abject suffering.  We felt very defensive about our decision because while we knew we were doing the right thing, we felt a lot of heat over it.

But at this point it is finally paying off.  My son is getting better.  There is a spark of vitality and health that strengthens every single day.

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He was thrilled to get a McChicken before school~

In our case we found the answer to our prayers, to our searching, but it meant pressing through a whole lot of pain and difficulty.  “As the time approached for him to be taken up to heaven, Jesus resolutely set out for Jerusalem.” Luke 9:51  Another version says, “He set his face like flint.”  Jesus knew full well what he was getting into and he pressed into it.  He was resolute.  Because he knew the joy set before him.  He knew the end game.

 

My husband and I never wavered, not once.  We knew that God had led us to this point.  We knew Gabe had to go through this withdrawal.  We were of one mind, and there is so much power in that.  Gabe, young as he is, he understood and was 100% on board too.

We’ve gone through a pretty extreme trial, but, we all go through stuff.  We all deal with pain.  That’s why we need hope.  We need to know the end game.  We need to know our Shepherd.

Often, the only way out is through.  We have to be resolute.

“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off every encumbrance and the sin that so easily entangles, and let us run with endurance the race set out for us.

Let us fix our eyes on Jesus, the pioneer and perfecter of our faith, who for the joy set before Him endured the cross, scorning its shame, and sat down at the right hand of the throne of God.” Hebrews 12:2-3

I know there are those who don’t get their healing.  At least, not here on this earth.  But we know the end game.  We know in whom we have believed.  We know this life isn’t the “be all, end all”.  It’s like a cosmic waiting room we bide our time in until we can get to the real deal.  And hardships help to wake us up to the eternal consequences and weightiness of how we live our lives here while we wait for the children of God to be revealed.” Romans 8:19

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Beginners Guide to TSW

I’m writing this guide to help the many who are starting their TSW journeys.  I’m writing this because you won’t get much help from the medical community or even alternative medicine practitioners.  I’m writing this purely to help.  I am not affiliated with any of the products I recommend.

I’ve read blogs and watched videos from people who healed quickly and are giving out advice but they had only a short period of T.S. (topical steroid) usage.  Well, no wonder, right?  I’ll give a short back story so you can know that we have dealt with severe TSW.

My son used hydrocortisone for a couple years and then fluocinonide for about a year.  During this time his health deteriorated.  He developed asthma and had multiple rounds of pneumonia.  He always had dark circles around his eyes.  When we asked his dermatologist about it she prescribed protopic to rub onto his eyelids. (insert forehead slap here!)

After a month on oral prednisone in an attempt to clear up very serious pneumonia, Gabe developed full scale red skin syndrome.  At that point he was getting red rashes on his torso and they would go away if we applied the fluocinonide.  Right before we discovered topical steroid addiction we were applying the super potent steroids AND protopic and sealing it up with plastic wrap in a desperate attempt to get his skin under control.

Gabe was exposed to a lot of steroids and went through an extreme withdrawal. When we discovered TSW (or RSS or TSA) we knew we had found the answer but had no idea what to expect or how bad it’d get.

In these two pics you can see how he looked in the first week.  His skin turned bright red, obviously.  You can see on his neck in the second pic how bad the oozing was.  It was running off like water.  I’d go to pick him up and his clothes would be practically drenched.

This is normal TSW and happens because the steroids work by shutting down the blood vessels close to the skin.  It calms the bodies own immune response and seemingly fixes the problem.  But when you’ve used for a long time and you suddenly stop, those blood vessels flood with nitric oxide.  You get bright red, angry, hot, oozing skin. Though people of color never get red skin, their skin gets several shades darker.

At this point we brought him back to the dermatologist.  It was a mistake.  Don’t expect much help from your derm at all.  They wanted to hospitalize him and slather him head to toe in steroids with a steroid drip to treat his “infected eczema”.  We stormed out.

We were able to find a much more sympathetic dermatologist who wrote us a school note for why Gabe couldn’t go to school.  Even she wouldn’t come out and admit it was TSW.  She wrote it as “severe eczema”.

You need to find doctors you can work with but don’t expect any miraculous breakthroughs or much help.  The dermatologists do largely know about TSW but either they don’t care or they hide behind a thick wall of denial.  They aren’t about to completely overhaul the way they practice and admit that their care has made so many people not only worse but desperately ill.

If you’re a parent of a child going through TSW it’s important that you establish that you are seeking medical attention for your child.  Make it clear that you aren’t refusing treatment, just steroids.  Ask that steroids be listed as an allergy on their chart.  Call their school and do everything you can to work with them.  You need to cover your butt because there are nutjobs who troll support groups and report parents to CPS.  You may even face a lack of understanding in your own family.  You need to have this proof that you are getting your child the help they need medically because the last thing you need is CPS opening an investigation.

Speaking of nutjobs…avoid the Dr. Aron people.  Not all of them are like this but there are a select rabid few who troll the recovery groups and try to deter people from the true path to healing.  The Dr. Aron method is not magical by any means.  It’s a quick fix and it doesn’t address the underlying problem- the addiction to the steroids themselves!  Many of them are stuck applying a concoction of steroid and antibiotic lotion 5-6 times a day.

When you do see your doctor you can ask for prescriptions to help you through this TSW hell.  Hydroxyzine (atarax) can be helpful to get some actual sleep.  We use it once in awhile because daily use was making our son incredibly irritable and depressed.  Like most drugs, it can be helpful but it has side effects.  We have a bottle of tramadol as well, for days when the pain is just too much.  Many use gapapentin or lyrica for nerve pain.  It is also helpful to have a script on hand for antibiotics in case of a sudden staph infection.

Depending on your usage and history you may need to take an extended leave or even quit your job.  My son required so much care that I quit my part time job to take care of him.  If you’re single, you may need to move back home.  Do whatever you can to enlist help and support to help you get through this.  My son missed months of school.  We did a homebound program where a teacher from his school came out and spent an hour a day with him so he wouldn’t fall too far behind.  It was necessary because he basically spent months in this chair unable to walk. 20170518_221523

You’re going to be utterly exhausted and afflicted with terrible insomnia.  The T.S. didn’t just affect your skin.  They were your supply of cortisol and adrenaline so your body simply stopped making it’s own.  It’ll bounce back but it’ll take many months.  In the mean time you’ll probably watch every episode of every show on Netflix in the wee hours of the morning.

Just about everything you experience is “normal”  Swollen lymph nodes, chills, edema, crust, ooze…all normal.  My son swelled up and was constipated for the first time in his life the first week of withdrawal.

What you need to familiarize yourself with is signs of infection.  Google “impetigo” and “eczema herpeticum” and get very familiar with how it presents so you can catch it early if (or when) it happens.

Virtually all TSW people have a major staph (staphylococcus) overgrowth problem.  The steroids actually enable the staph to grow out of control and further colonize your skin.  The best bet in beating it is building up your immune system, not tearing it down.  Steroids are a quick band aid, and actually make the problem so much worse in the end.  Same with immunosuppressants.  You need to get healthy so you can actually heal and stop covering up the problem.  Many people do bleach baths (a 1/4 to 1/2 cup regular bleach in full tub) to reduce the staph on their skin.  We also used liviaone probiotic spray off of amazon.  The good germs help coral the bad ones.  I wash my hands carefully after treating Gabe or I get staph bumps.  I wipe down commonly touched surfaces with Lysol wipes and I clean his tub with bleach pretty frequently.  Nothing else kills staph.  Believe me I’ve gotten infections to prove it.

Regarding immunosuppresants or “immunos” this option should be an absolute last resort.  I’ve read many blogs of people who used immunos and it made their symptoms much better until they stop using them and they are virtually back to square one and need to start withdrawing all over again.

20170705_114604The absolute best thing you can do is support your health, not undermine it.  Especially since your immune function is already very compromised.  At one point my son contracted the measles from being around a toddler who had recently had her MMR shot.  That was four days of sheer hell.  So be aware that you are immuno-compromised and that risk is there.  For heavens sake don’t get any vaccinations.

After you go through the bright red skin phase you’ll go through different phases.  It’s helpful to take pictures so you can document your progress.  I took pictures of my son at his worst.  For evidence in case we ever file a lawsuit for the harm inflicted on him by negligent doctors and also to encourage us that he was making progress.

At his worst his legs were actually purple.  He looked like a victim of radiation poisoning.  20170707_204127The areas that were hit the worst were the ones that had received the most T.S. over the years.  But it really affected his entire body.  From the swelling and bacterial infections he lost virtually every single finger and toe nail.  In this picture you can see that chunks of skin were rubbing off while the skin underneath was still too raw.

In TSW it’s like you’re a snake and you shed your skin every single day.  There’s just going to be skin everywhere.  We still (8 months in) vacuum nearly every day.  I wash his blankets every day.

We use $5 fleece blankets from Walmart.  He sleeps on top of one with another one covering him.  Then in the morning I can easily roll them up (to contain the crust) and toss it in the washer.  It’s so much easier than stripping off sheets and all his bedding every day.

Speaking of laundry, switching to a free and clear detergent is helpful.  I wash my sons clothes and blankets in a natural powdered detergent and use white vinegar as a rinsing aid instead of fabric softener.  Vinegar helps deodorize and soften fabric, as well as getting all the soap residue out.

“TSWers” argue big time about the importance of diet and even what diet is best.  My thought is that the body needs the building blocks of a nourishing diet to properly heal.  This is not a time to go on a ridiculous diet.  You need extra protein.  You need a lot of healthy fat.  Avocados, grass-fed butter, bone broth, fish, nuts, etc. you need a balanced diet with the amino acids from complete sources of protein.  You also need antioxidants from fresh produce.

Because your adrenal glands are already completely slaughtered from the steroids you want to avoid further stressing them with sugar, alcohol and caffeine.  I’m willing to bet virtually all TSW people also have candida overgrowth from antibiotics and a weakened immune system.  The candida is a nasty yeast that lives on and in you and it feeds on sugar.  We noticed that our son got instantly itchy after eating sweet treats.  We cut way back and he felt much better.  We noticed his anxiety levels went down as well. Sugar feeds the yeast and it also depresses your immune system.  So it’s extremely wise to limit it, even in the form of juice and fruit if you believe you have candida overgrowth.

Probiotics can also be very helpful in healing your gut and aiding in your healing.  Other supplements we have found very helpful with Gabe have been astaxanthin (a super antioxidant), powdered super greens, vitamin D3, and CBD oil.

I see a lot of questions about CBD.  CBD is cannabinoid oil and it’s the medicinal part of the marijuana plant.  It won’t get you “high” and it’s legal in most states.  It helps with inflammation, anxiety, pain and insomnia.  It was extremely helpful in the first few months for us.  Gabe would be exhausted and in so much pain until I gave him a few drops of his CBD and he would be able to get a few hours of peaceful sleep in.  Or he’d be able to get up and move around a bit.  I ordered mine here https://www.anandaapothecary.com/shop/cbd-formulas/

We’ve just lately found Maxasorb BioActive Vitamin B12 Cream to be very helpful.  I apply a few pumps all over his body after his bath and he perks right up.  His skin is also less red since we started using it.  It has also never stung or irritated his skin.

Just this week we tried alkaline water for the first time.  I heard about it on the ITSAN support group and decided to try it.  It’s already made a world of difference for him.  He has much more energy and much less itching.  I highly recommend it.  I found our first bottle at Target and ordered a case of Essentia brand water off of amazon.

We have also done warm baths with either dead sea or Epsom salt nearly every day.  We do salt because it cleans the wounds and is very healing for stressed adrenal glands.  One trick we’ve found to get around the water stinging is applying cocoa butter right before he gets in.  When the skin is very dry even water stings.  The cocoa butter acts as a buffer until the skin can get used to the water.  The bath was great because for Gabe it was, for a long time, the only escape from feeling pain and itchiness.

I like cocoa butter as a moisturizer because it is very gentle.  It is a saturated fat so it is unlikely to go rancid.  It also has a warm, chocolately scent that can be useful in covering up that oozey smell.  I order my cocoa butter off of amazon.  It comes in a big brick.  I put in in a glass container and melt it as needed with a hair dryer in my bathroom.  It only takes a minute to melt what I need.

We’ve spent lots of money on eczema creams and potions and it’s pretty much a waste.  We used a lot of Vaseline and aquaphor early on but realized it was making him itchier and drier.

Your skin will go through a lot of changes and you need to find what works in each stage of TSW.  Generally, using products with less ingredients is better.  You can even rub something as simple as olive oil on your skin.  Whatever you use it can be helpful to add essential oils, which can act as a natural antiseptic with healing properties.  Thyme, lavender, tea tree, frankincense, and clove are all very good.  I buy my essential oils from plant therapy or ananda apothecary.  You just need to make sure that they are properly diluted. When my son is very upset I put a few drops of lavender in his bath, mixed with his bath salt.  I also put a drop of aura cacias “pillow potion” on his pillow at night.  They don’t work miracles but they do help.

Early on we also used a lot of zinc cream.  Zinc is very protective and can offer some relief to very raw skin.  We liked sudocrem (bought from Walmart online) but you can grab a good diaper rash cream and it’ll do the same thing.

Some people advocate for moisture withdrawal.  We haven’t tried it with our son, because it would be too painful and difficult.  It seems to be helpful in the later stages in teaching your skin to make it’s own oils again.

Getting through those first months is so tough but you can take comfort in knowing that so many warriors have gone before you.  At our low points I probably read the success stories on https://itsan.org/rss-images/ ten times.  My son and I also enjoyed Briana Banos funny and educational videos on youtube.

The best advice is to take it one day at a time.  No one knows how long your healing process will take but you can do so much to make it better and shorter!

At this point my son is getting more and more clear.  He is back at school for half days.  He is starting to get back to normal life.  He’s gone from this terrible “before” to this “after” in just six months. 18010182_10158675908895074_4895123062797969444_ngabebabeHe still has a way to go but we know he is well on his way to being truly healed…and tough as it is, you’re on a journey to being completely healed as well.  Thank you for reading and God bless you.

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When You’re Going Through Hell…

…you just keep going.

It’s a bit of the unofficial motto of TSW, or Topical Steroid Withdrawal.

In the ITSAN facebook group I belong to, I frequently see people post things like, “I can’t do this anymore.”  or posts from people who have just started the process of withdrawal and they are terrified of how bad things are going to get.

It’s like waking up and discovering that you’re up to your neck in quicksand.  You either give up or begin the long and painful process of clawing your way out.

Yesterday I was thinking about the visits we had to Gabe’s dermatologist.  At first he had responded very quickly to the super potent creams.  But on follow up visits his eczema had returned and was spreading.  I remember the almost shrill tone of her voice as she told us we needed to use more cream.  We needed to apply it twice a day.  We needed to seal it in with wet wraps.  We needed to follow her instructions exactly and we weren’t and that’s why he wasn’t getting any better.

Of course now I know that those cursed creams were killing him.  His skin was the tip of the iceberg.  I am so glad we never used as much cream as she wanted us too.  I’m so glad we used the protopic (an immuno-suppressant cream) only a few times.

His health was getting worse and worse.  The steroids weren’t working anymore.  He had a weird red rash on his torso that wouldn’t go away.

My husband discovered TSW reading an eczema blog.  Everything definitely clicked.  We had answers but now we had to weather the hellish withdrawl.  We had to claw our way out of this quicksand that we had stumbled into.

Eight months later and the redness has faded.  But right now he deals with nerve pain where the nerves are healing and regenerating.

His legs aren’t a mottled purple anymore but he still oozes plasma out of too thin skin.  He still wakes up in a pile of his own dead skin every morning.

He is still very dependent on us for much of his care.

I don’t know why I am writing this other than I just need to get his story out there.  The medical establishment almost killed him.

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His entire body went through this extreme and painful withdrawal.  Thankfully, it didn’t hit all at once.  This was the first month when it started on his neck and torso.

 

I implore people, please do you own research.  Don’t blindly trust someone because they have a stethoscope around their neck.  Investigate the ingredients of anything you allow to be put on or in your body. gabebabe

It’s been a long fight, an all out bloody crawl, back to health.  But this is my beautiful boy today… healing naturally with the help of supplement and lots of TLC.

He still has a long way to go but we’re thankful for the progress we’ve made and all we’ve learned along the way.

 

 

 

 

The Empty Tomb

Yesterday was a real let down for me.

See, it’s been raining here for dayyysss.  Our back yard is a soggy marsh!  But yesterday was beautiful.  Sunny and 65 degrees.  I was really hopeful that we’d be able to get out and hike and have fun as a family.

But Gabe went downhill really quick.  By the time we got to the park he was already frantically itching.  He shredded up his legs and feet.  We had to go home where I spent the rest of the day caring for him.

As much as I love him I have to admit that being a caregiver to a very ill child is incredibly draining.  It hasn’t just been weeks, or months, but years of this.

But what also happened is that we had a really rich spiritual conversation.  Gabe’s suffering has made him very sensitive to the things of God.  That and all this time I’ve spent with him has made our bond so close.  ggcici

Sometimes I just stop and thank God for giving me such a great kid.

I think about how when he was so little, the times his father and I knelt down next to his little toddler bed and prayed over him while he slept.  We dedicated our child to God and asked that he would use his life in powerful ways.

I was praying a few weeks ago and feeling very discouraged and hopeless even, but God reminded me of those prayers.  He told me, “Just keep dedicating him to me, every day.”

I woke up this morning and prayed and petitioned God with tears. for his healing.

I got this image in return of the sun rising over the empty tomb.

It’s our faith, it’s our life.  The empty tomb is the hope of humanity.

By his stripes we are healed. 20171008_074619

Suffering and pain may come knocking at our door.  They may even stick around far longer than we’d hope.  But the empty tomb gets the final say.  Weeping may last for the night, but JOY comes with the morning.

Sisters and Grace

Growing up I had two sisters (also a lone brother, pity him).  My older sister is 7 years older than me so I mostly looked up to her, followed her around, and attempted to read her diary (unsuccessfully though because it was in cursive, and I was 7).

My younger sister was only a year younger though so we were incredibly close but fought like you wouldn’t believe.

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We only looked sweet and innocent!

I’m pretty sure my parents considered adoption at points!

We’re both so much alike in that we are head strong, idealistic, and passionate.  We’ve gotten into many debates.  We’ve taken different paths.  At times those paths led us in wildly different directions.  We’ve done things to hurt each other.  I was the dutiful, worried big sister and she was the care-free little sister throwing caution to the wind.

But blood is thicker than water and we’ve always come back and managed to sort through our differences. cicisash

When you love people you find common ground.  You work things out.  You forgive.

Offense can sneak in and bring down families, churches, marriages, even ones faith.

I was wrestling with it recently (um, today, it was today) and I want to share how we can recognize it and deal with it effectively.

As soon as I realized I was upset with a certain someone I tried to quiet my emotions and keep my perspective.  But when you are offended your emotions get inflamed with hurt and anger and indignation and perspective can be quick to fly out the window.  My own tendency is to get offended and then try to figure it out on my own, like “why did that person do that?  What are they really saying?  What is their problem? (it’s always their problem, amiright?!)”…

But today I felt all that rising up in me and I stopped, dropped and prayed.  I did.  I put my hair dryer down and knelt right in my bathroom to pray.  “Lord, I don’t want to be offended.  I know it is a big deal to you.  Lord, help me to let this go.  Lord, please help this person.  Please give them clarity and grace and maybe a gentle smack up the side of the head with an anointing of perspective.  Amen.”

Normally I wouldn’t surrender it like that.  I’d analyze and over-analyze and get all tied up in knots over it.  I would sleep horribly and then feel even worse.  Because offense steals our peace.  It steals our joy.  It stops up the fountain of the grace of God from flowing freely in our lives.

But I did pray, and I felt so much better.  I let it go.  I didn’t pick it back up.

Often, people hurt us out of their own places of wounding.  Our insecurity causes us to act a fool at times.  It can control us if we aren’t careful.  I know I’ve sinned from that place.  I’ve needed grace a’plenty.  Why would I not being willing to extend it?

There are very serious warning about not letting offense come in and take over.

“Pursue peace with all men…that no bitter root grows up to cause trouble and defile many.”  Hebrews 12:14-15 

Your bitter root is not staying contained.  That thing is going to wind its way around you until it chokes the life out of you and goes on to defile many.  Bitterness is something that we starve or nurture.  We need to pull it out by the root.  We need to deal with offenses as they come so that we don’t have any rotten roots growing wild producing rotten fruit stinking up our lives.

We’re all human so it’s safe to say that wherever we gather; stupid, insensitive things will be said.  People will feel left out.  People will clash.

We need to keep strengthening those forgiveness muscles.  Especially in those close relationships where you see people at their best and also at their worst.

There isn’t much sadder than the distance that results from a refusal to forgive.  People can genuinely love each other but lose years of precious time together because of the bitterness that took hold.

Also, (hello) it’s a major, major deal to God.

“But if you do not forgive others their sins, your Father will not forgive your sins.”  Matthew 6:15

God isn’t going to give you this beautiful and costly gift for you to hoard to yourself.  We don’t siphon grace.  We live it out.  He forgave, so we can too.

Mini-Me Emo

Have you ever thought to yourself, “I wish I had a mini-me!”?  lol  Me neither. 15977912_10158152160410074_5460029857167451154_n But it happened.  My son Gabe is so much like me.  He looks like me and basically has my personality down to his music taste.  True story; as a child my favorite song was “Take on Me” by A-ha.  Which is now his favorite song.  It’s so odd sometimes just how much gets passed down from one generation to the next.

I’m a sensitive introvert (an INFJ, to be exact) and I’m guessing he is too.  I swing between two extremes in personality- everything is wonderful and I love everyone…or woe is me!  Nobody loves me!  Life is horrible!

Basically wildly vacillating between these two extremes…

PinkiePieHiRes tickle-me-emo

I see so much of that in my son as well.  Finding out my personality type was extremely helpful in understanding why I think and act the way I do.

I know I write in a very serious manner but that is just part of my personality.  In my life I am really very goofy and silly and weird.  I love to laugh and would do just about anything to elicit a laugh.  But I also have this very serious, reflective side.  Lately, that part has been very much in the forefront in going through an extended health crisis with my son.

Under stress I’ve just not been in the best “head space”.  I think a part of me was upset when everyone else’s life just kept going like normal when mine came to a screeching halt.

INFJs are known for “door-slamming” when under pressure and I can look back and see I have done that multiple times in the past few months.  A door slam is when we reach a point of stress and frustration that is such that we completely cut people out of our lives.

Today I took a major step forward in repairing one such damaged relationship.  It felt really good.  I realized (ouch ouch ouch) that I can be a bit of (!!!) a drama queen at times.  I have compassion on myself though because I’ve been given this weird insight into how I am wired, because I see so much of it in my son as well.

I’m emotional.  I get hurt easy.  I tend to turn inwards instead of just outright addressing problems.  But I’m also caring and thoughtful and quick to forgive when I eventually do come to my senses.

Having children is humbling but also enlightening.  I know, for me, it has helped me to be more compassionate with myself.  I love my children so dearly but I see the humanness there.  Their weaknesses.  Their struggles.  But I love them so much, they are so precious to me.  I love them for who they are, not in spite of their humanity but because of it.  They are vulnerable and they need me and that only makes me love them more.

I think God sees us very much the same.  He loves us in our humanity, in our struggle.  He has a Father’s heart towards us.  It gives me a tremendous sense of comfort to think of God in that way.

“Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you!” Isaiah 49:15

I think that is a word for someone.  I will not forget you! 

“Heavenly Father, help us to get a sense of how much, how dearly, you love us.  Help us to know and truly understand that you will not, can not, forget us.  You fashioned us uniquely in our Mothers womb.  You know us intimately and love us eternally.  Amen”

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.