A Cherry on Top

Last night, I dreamed we were at an ice cream shop.  I walked up to the counter and ordered a gigantic chocolate sundae for B.  He looked at me with pure elation on his face and said, "Is it okay?  Can I really have this?"  I told him, "Yes."  But in the back of my mind, I was thinking, "Something is not right."  An internal panic took over.  I was torn between that delightful anticipation on his face and the sudden realization that he is allergic to that sundae.  Not just a little bit allergic, but throwing up, itchy hives, and who knows what else allergic.  Yet in my dream I was going to let him eat it.  Toss caution to the wind and let him enjoy the taste of the cold sweetness.  As if letting him eat that ice cream would be the end of the allergies.  A big "Take That!"  One act of rebellion to put the food allergies in their place.  I woke up feeling so many things: fear/happiness then empowered/defeated.  Crazy dreams.

B is getting older and we are getting a lot of questions as to the necessity of the diet, the validity of the allergens, if just one wouldn't hurt, is he thin because of the foods he eats or can not eat.  Please know that we have researched everything extensively.  We don't follow advice blindly.  We pray daily.  We've seen the positive changes in his health.  And we make sure B gets a balanced array of foods that contain fats and vitamins and minerals and calcium and iron and......

We would give B that ice cream, cake, chips, pizza, etc. if we could.  We do not follow this protocol for sympathy, attention, control....to be pain in the tush helicopter parents.  Believe me when I say that if an ice cream sundae would paint that beautiful smile on his face without causing bodily harm, I'd be the first in line asking for two scoops, whipped cream, and a cherry on top.  That ice cream represents a big dose of normalcy.  And my wouldn't normalcy taste good!

PANDAS Awareness

Too tired to update tonight, but I did want to share an excellent PANS, PANDAS, PITAND awareness video.    Please watch.  Thank you.

Perspective

"Mom, where's my Cheetos?"
"Mommy, I really miss cheese."
"When can I have pizza again?"
"When will my allergies go away?"
"Will I always have to have allergy shots?"

"I don't want a B12 shot!"

"Why do I need an epipen?  Does it hurt?"
"Am I allergic to this soap?"

Sometimes, I wonder if B feels micromanaged.  I worry that he will resent me for being so hyper vigilant about his surroundings and what he eats.  I do my best to recreate the foods he misses.  I try to let him make choices.  But there is a lot of 'no' and 'I'm sorry.'  He hears it too often.  Sometimes he just wants to fit in.  Eat what his friends are eating.  Eat the cake at the birthday party.  Have the same treats wrapped in cellophane.  Enjoy everything at the family dinner.  I'm always amazed at his will power and the way he mostly lets it roll off his back.  But lately, I've been getting the questions.  The hurt look in his eyes when I once again tell him,  "I'm sorry baby, there's _______ in that."  To him, it must feel like he is controlled.  This worries me and makes me wonder...will he one day resent me?

God gave me perspective today.  He took those worries and eased them.  He worked through B and spoke to my heart.

We met some friends at the park today.  B needed a drink and ran a little further than I was comfortable with.  There were a lot of school groups at the park today.  I ran behind him and watched from a distance as he drank water from the fountain.  When turned around and saw me, his face lit up.  He walked to me and grabbed my hand.  "Mommy?  Is there a gooder mommy than you in this world?"  My mind was thinking, "Absolutely,"  but I answered, "What do you think?"  He thought a second and said, "I don't think there is.  You are the best mommy."

B had an award ceremony tonight for AWANAS.  Each child got a sack of prizes and goodies.  His Spark leaders are awesome and filled his sack with a few fun things and about 4 Dum Dum suckers, a safe candy for him.  Candy is a rare treat at our house.  B prizes it when he gets a kind he can eat.  When we got home, he picked out a strawberry Dum Dum and said, "Would you like this one mommy?"

He is thoughtful and kind and selfless.   I may not be the goodest mommy in the world, but I am the most blessed.  Thank you God, for this little boy who teaches  me so much and for his little sister who fills our hearts with laughter.

On Top of the World

Amazing things happening here.  Amazing. :)  Two weeks ago B was very sick.  He had a high fever, was lethargic, had a sore throat, and his legs were weak.   I was dreading the worse.  The aftermath.  Usually after a sickness like this, his OCD increases terribly, his sensory issues return, and his tics are strong and ever present.  This time, the fever broke and nothing.  Nothing...Other than two days of having a hard time focusing on school work, some shaky handwriting, and a couple meltdowns.

Here we are, 2 weeks later, and B is doing better than he has all year.  He has very minimal tics..just a few a day, that's it!  His appetite is back and little man is eating a lot!  His mood is great!  We are on top of the world! I don't know what that fever did, but that seemed to be the switch that tipped him into better health.  It's been a wonderful two weeks.

We've been slowly testing foods that he had tested allergic to 3 years ago.  Starting with the lowest allergens first.  We dab a little on his skin and watch for a reaction for 15 minutes to an hour.  If there is none, we let him try a little bite.  Then a few days later, a little more of the food.  So far, he's had no reaction to apple or beef.  I'm a little on the fence with rice and would like to try a small portion again.  I think he tolerated it well.  Ghee (or clarified butter with the casein removed) was a definite no go.  We put a little on his skin and in 10 minutes, he had bright red splotches on his arm.  Dairy might be out forever.  Also, he's been able to tolerate a little corn again.  We'll try not to overdo it this time.

School is going very well.  I wanted to love the Heart of Dakota curriculum, but it just wasn't clicking for either of us.  Although we all enjoyed the Bible portion and are keeping that.  I've decided to switch to Five In A Row and we are both in love.  B has a passion for books.  Five In a Row lessons revolve around one book for 5 days.  All science, language arts, social studies, math, and art lessons are centered around the book of the week.  This week, while reading Madeline, B discovered his love of charcoal drawing.  We'd talked about the author/illustrator's use of black and white with a little color.  B has filled up an entire sketch book in one week.  This from a little boy who is very disinterested in crafts.  I guess crafts put his creativity in a box.  Every morning after breakfast, he gets out his sketchbook and creates a new world full of castles and Humpty Dumpty, and happy suns.  We also supplement with Horizons math, dolch sight words, BOB books, and Explode the Code phonics.  I'm excited for this week when we will read Lentil.  B has also been reading.  How cool is that?  He's very impressed with himself that he can read 6 BOB books and his word wall is growing.  I'm so proud of him.  And what a gift it is that I had the privilege to teach him!

I am pleasantly surprised at the difference in our house now.  The whole mood is lighter and we are enjoying our days.  I thank God for guiding us through every step of the way.  Oh, and I'm gluten free now...so maybe that contributes to our happiness?  I know I feel a lot better!  When mama feels good, we all feel good. :)

Letting Go

I wish somebody would have told me while I was pregnant with B.  You know, another mom, "Hey you know I love you and you're going to love this baby more than anything in this world.  Pray before you make any decision...and really listen to God.  Your answer may be different than everything the world is telling you.  God gives you special intuition when it comes to your child.  He is awesome like that.  Don't let anyone pressure you or scare you away from what God is telling you.  Don't second guess yourself because you are getting advice from 500 places.  Close the baby raising books, close your ears, close your eyes, and pray."

I wish I had listened to that voice, that instinct, God whispering to my soul.  I can't turn back time.  I can't undo what has been done.  For a while I thought I could make up for it by fighting.  Warn other moms.  They need to see what is happening to our children.  God gave me a huge heart for children.  When I hear of another vaccine injured child, I hurt all over again.  When I see a newborn baby, I no longer rejoice.  I pray fervently.  I clang the drum over and over and over.  So much that nobody hears the drum anymore.  Nobody wants to know, to believe, to listen.

I went to my Father in prayer this afternoon.  I cried out to him that I hate this.  I hate it.  I hate being on this side of things.  I wish I could turn back time.  I wanted guidance.  I wanted peace.  I wanted B to be healed.  I wanted answers.....see how selfish I can be?  Why, God, am I not getting any direction here?  My answer: "Daughter, you are talking at me, open my Word so I can talk to you."  Point taken.

I flipped open my Bible and ironically (okay, not ironically, God knows what he is doing) I opened to a bible study inside my Bible and the first sentence I saw was this, "Sometimes, you just have to let things go."  Hmm.. The verse above that said "Hatred stirs up dissension, but love covers over all wrongs.  Proverbs 10:12"  I have been full of hatred.  I confess that.  The momma bear in me loathes what the world is doing to our kids.  I've been dwelling on it so much, that I feel myself pulling away from God.  And my prayers have felt hollow.  I randomly opened my Bible to another page and this verse jumped out at me right away, "The end of all things is near.  Therefore be clear minded and self-controlled so that you can pray.  I Peter 4:7."   Ok, God, I'm hearing you.  How have I not noticed that verse before?  I had it underlined even, but today it struck a chord.

So, I'm letting go.  God is bigger than me.  He can handle this...and will in His own time.  I truly believe that.  I can't speed up the process.  I will still advocate for parental rights, for medical rights.  I will still help any mother (or father) who comes to me with questions.  Please parents, ask the hard questions.  Has the current vaccine schedule ever been safety tested?  If you are told yes, ask to see the test.  It doesn't exist.  Research each vaccine and it's side effects and benefits.  Research each disease and it's risks and the benefits of lifelong immunity.  Look at your family history.  Look at the safety studies and how they are conducted.  Was there a true control group?

These are things, as parents, we should all do.  I'm not passing along that info via facebook anymore.  At least not now.  Maybe not ever.  God is more powerful than facebook.  I will spend that time on my knees praying for our kids.

Moms (and Dads), I love you. You love your children more than anything in this world.  Pray before you make any decisions...and really listen to God.  Your answers may be different than everything the world is telling you.  God gives you special intuition when it comes to your children.  He is awesome like that.  Don't let anyone pressure you or scare you away from what God is telling you.  Don't second guess yourself because you are getting advice from 500 places.  Close the baby raising books, close your ears, close your eyes, and pray.

Randoms.

It's been a busy one today and I'm having a bit of brain fog.  I have a million random thoughts.  Any attempt at organizing them will fail.  So, I'm just going to haphazardly share them.

I've been daydreaming of sending B to school.  Being room mother at Christmas parties.  Having mornings to myself to get things done.  Not worrying if B is learning enough, if I'm depriving him of something, if not going to PE and Music will somehow ruin him for life.  Then he does something amazing like read a short book, tell me Sputnik was the first space probe, solve addition problems,  count to 39 and my daydream bubble pops.  I keep thinking about last year when he couldn't count to 10 and couldn't say his ABC's.  He told me he wants to always have school at home.  He's doing very well.  Jilly is too!  She loves everything about school, except for the listening to the teacher part.  We're still working on that. :)

We took a trip to Disney at the end of October with my sister and her boys.  It was so much fun!  B adores his cousins.  I love that they treat him like a big kid, yet will carry him when his legs get tired.  On the plane ride home, B's tics and stims were out of control.  He even had a vocal tic.  It was a rough ride.  These tics and OCD behavior hung around long after the trip.  I was beginning to wonder if we needed to find a PANDAS specialist.  We took him to Dr. B and he told us to increase his probiotics to 3 and slowly increase the Olive Leaf Extract.  Probiotics kill yeast and OLE goes after strep.  We did this and in about a week or two, he was back to baseline.  Dr. B is brilliant!

Dr. B is so brilliant, that I am now a patient.  I am seeing him for an all day long, feels like I need a nap an hour after I wake up fatigue.  I'll get the test results back in a week, then I'm sure B and I will be food buddies.  B is very excited about this.  I'm not so much.  I've known for awhile that there are some foods I react to.  Mostly my favorite foods. *sigh*  Maybe this is the push i need to be even more creative with my cooking.

Jilly turned 3 last month.  Three!  I can't believe it.  The age of 3 has brought with it the love of coloring and a nurturing of baby dolls.  She is a little momma.  She loves to shush us all the time, "Shhh!  My baby's sleeping!"  B said to her, "I love you even when you do naughty things."  I do to.  She is adventurous and fun. Sometimes that adventure and fun leads to boredom in the timeout chair.  But when she looks sadly at us with those big blue eyes and ask for a hug, we all melt.  She really is a sweetheart.

I've been learning more about PANDAS.  Basically, if B is exposed to strep, he forms antibodies.  These antibodies cross the blood/brain barrier and attack his basal ganglia.  It's similar to what happens to the heart in Rheumatic fever.  It's so important that he not get strep.  Other illnesses can trigger a flair as well (which might make it PANS?  Any PANDAS moms help me out here.)  Right now he's fighting a cold and his OCD is heightened.  Over the past 6 months, B's speech has been affected.  He now pauses extra long on words, drawing out some syllables.  I don't know why or if this is permanent.  I'm going to talk to his doc about it when we have our appointment.

That about wraps up the randoms.  Hopefully a good night's sleep will clear this brain fog and my next post won't be so all over the place.

Dear Self of 2010

 I know you are scared.  I know everything you'd hoped for your little boy is up in the air.  You feel alone, helpless, and overwhelmed.  Please know that it will get better.

1.  You are not going to learn this over night.  Have patience with yourself.  You have so much to learn.  Get good sleep.  Take care of yourself.

2. You will feel a thousand miles from normal.  Everyday situations will seem bizarre and what used to be easy conversation with friends turns into distance.  Your mind and heart are with your child.  It's okay.  Because someday, you will ease back into 'normal.'  Not completely.   Your world is changed.

3. Rely on God.  Cry out to Him.  Don't hold your worries and fears in.  You may not realize this now, but God loves B even more than you do.  Even more....I know it doesn't seem possible that anyone could love him more, but He does.  God is in control.  You can't see it now, but you will.

4.  You will have an awesome group of loving friends who 'get it.' I know you are alone in this now, but you won't always be.  Soon enough, you will have a gripe session over how it's unfair that all gluten free items contain rice.  You will rejoice with friends over the improvements in your kids.  You will pray fervently for the health of your friends' children.  You will swap stories and recipes.

5. PANDAS.  It's ugly.   I know your mind can't wrap around this diagnosis yet.  You are naive in thinking that it's all okay.  And that's alright.  Emotionally, you're not ready.  When you are, you will kick yourself for not taking care of that one illness that made B's heart race and his fever soar.  Antibiotics are scary for B but PANDAS is worse.  It's rheumatic fever of the brain.  Find a PANDAS group online ASAP.

6. Love on your family.  Cherish every moment with the in laws.  Bring a camcorder.  Let them know how much they mean to you and how much you love them.

7. Thank your mom.  She will be there for you in big, big ways.  Realize that she loves you as much as you love B and Jilly.

8.  It's easy to get wrapped up in your own pain and confusion.  Overwhelmed.  But realize Erik is just as scared.  He is in this with you.  Not every family has that.  You are blessed.

9.  B will grow in ways that will bring you joy and peace.  While his physical body is ill, his heart contains a love for Christ that makes his physical ailments seem small.  God is working in his heart.  You just watch.

10. Your sweet little Jilly will bring humor in times of tension.  Sunshine when your sad.  She will keep you laughing every day.  God sent her to all of you.  She will be B's best friend and their giggles together will become your favorite sound.

11.  Guess what?  You will homeschool.  No, really!  I'm not kidding.  And you will like it.  And B will blossom.

12.  Reach out to your family.  Right now, you are holding it all in.  And I know it's because you are afraid you'll crack.  And you will....a lot...in public.  And will be embarrassing.  But you will be okay.  Reach out.

13.  There will always be a little nagging worry in the back of your mind.  Right now it is a screaming voice in your head, but it will dim...a bit.  Stop and pause on God's blessings.  Write them down.  Read the Psalms.  Reflect on Gods love and protection.  Write them down.

 God loves you.  He is in control.  He is holding you.  He is holding B.  Take a breath and ponder this.  B is His little boy first.  Rejoice in that.  God is greater than your worry.  In His arms, you will find rest.