Dear doctor who pretended to give a crap about my son,

It has taken me time to fully process our conversation. Weeks, in fact.

My husband and I took our son to see you, the head of neurology at an excellent children’s hospital, hoping to describe his tragic, sudden fall into a controversial autoimmune disease called PANDAS/PANS. Well aware of the controversy, I didn’t expect much from our visit besides a neurological evaluation.

When you readily acknowledged you have other patients who are vaccine-injured like my son, my heart skipped a beat! Maybe, just maybe, we would have an honest conversation. One about healing and possibilities.

I never believed you would jump on board with all our treatments, yet I hoped telling our story could help other kids, especially those who ended up in the ER like my son.

So why, when I was home from our appointment, did I shake uncontrollably? Why did I cry the first, second, and third time I described the visit to a friend?  Why did I cry myself to sleep that night?

I’ll tell you why.

You acknowledged my son’s vaccine injury, yet ignored his healing.

You spent 1/4 of the visit subtly insinuating that my son was still 3%…no maybe 1%…hell, probably at least 4.75% on the spectrum.

Instead of being amazed that my son has friends, was voted into Student Council, enjoys paintball parties and sleepovers, loves hunting and playing volleyball and baseball (when not deathly sick), you twisted my son’s words. You twisted his interest in history—you were the one who freaking asked what his favorite subject was in school—into proof that I was wrong about his healing.

Why? Why didn’t you ask me how he was healed? Were you afraid to? Did acknowledging his healing shake you to your core?

Instead of asking, you chose to hide behind a smile and lying eyes. Wow, you were sneaky. A mere five minutes after admitting you were not an expert in PANDAS/PANS, you proclaimed the treatments prescribed by a doctor who IS an expert in this disease to be unnecessary.

The IVIG, which saved his life and continues to heal him, should be stopped. Lyme disease? Well, that doesn’t even exist in Missouri. The multiple viral and bacterial infections my son tested positive for? We were “chasing infections.”

Why? Why didn’t you, even if you can’t fathom how the treatments are working, why didn’t you ask the rationale behind them? Or at least ask if my son was improving with the treatments?

Doctor, both of us had an agenda. You wanted to validate your belief that PANDAS is so rare, so vague and confusing that no proven treatments exist. Oh, how you wanted to squish us into the narrow-minded box of your knowledge!

My agenda? I wanted help for insurance coverage for my son’s IVIG, the treatment that saved his life. I wanted help getting a PICC line or port so my son didn’t endure 6 or 8 IV sticks every month for his infusion. Most importantly, I wanted—no, I demanded—to know why PANDAS wasn’t on the radar for the ER physician and zillions of med students who evaluated my son, who presented with classic symptoms of acute onset PANDAS in the ER.

Dr. Head of Neurology, I have a couple of choice words for you:

 

THANK. YOU.

 

In January, my son was dying. He was wasting away, unable to eat or drink, trapped in a mind being attacked by his immune system, in excruciating pain. He needed a feeding tube, and he needed to be in the hospital.

Fear caused me to stay at home, waiting for our PANDAS doctor to work magic with the insurance company for treatments. Thank God I followed my instincts. Thank God I did not take my son back to the hospital.

You and doctors like you would have killed him.

Had you asked me (instead of whisking us quickly out the door) I would’ve shown you how one IVIG took my son from this:

 

To this:

 

Had you asked, I would’ve explained how the first IVIG saved him from a feeding tube. Saved him from dying. The second and third IVIGs made him able to process reading again. The fourth and fifth increased his cognitive functioning so he could do math again. Number six and seven allowed him to go to the zoo, go to the park, see friends!

Had you asked, I would’ve explained how treating his Lyme disease and Babesia stopped the never-ending joint pain. After starting antiviral medications, my son was able to stop lying in exhaustion on the couch all day and go to his school field day, playing games and running for two hours in the hot sun! You see, Dr. Not-An-Expert-In-PANDAS, those infections we are “chasing” make his immune system continue to attack his brain. Treating the infections makes his brain heal.

I don’t know if you don’t give a flying duck about my son or if you are scared that I know more than you about my son’s disease. I honestly don’t care. My concern is with the estimated 1 in 250 children with PANDAS who walk through your door with OCD or a tic, looking for help.

May God have mercy on those children and families. May the Holy Spirit open your heart and mind, remembering us the next time you meet a patient with these symptoms. Somehow, someway, may our story reach others, sending light and healing and hope.

Sincerely,

 

The strongest, most determined warrior mom you’ve ever met!

My family needs your prayers!

It’s been very busy around our house adjusting to having ten children! Petra is 6 1/2 months old now. She is beautiful and chubby with a contagious smile that lights up our family. Hopefully I will have time to blog about her soon.

I write this because I believe in the power of prayer. Our son Drake became ill on October 2, 2015. He has never recovered, and his physical and mental state continue to deteriorate.

A month into Drake’s illness, our family was crumbling from stress and worry. I texted this little poem to my oldest daughter after yet another terrible morning. It was a corny way of attempting to reach out to her.

Just Another Morning

Screaming, yelling, threats, pierce my heart.

I refuse to let others see.

Cold tears acknowledge reality.

Smiles hide my empty eyes.

Carry on, my God says to me.

Fight the urge to feel numb.

How will I be okay if he is not?

My family implodes

With constant sadness and anger.

Christ reaches me through Mary’s touch.

Warm, freeing exhale.

Glimpse of peace.

Two mothers embracing.

Blind faith in our All-Knowing God.

Strength for tomorrow’s morning.

Drake has been found to have multiple infections, an autoimmune disease, and an immune system disorder. Insurance (of course) is not wanting to cover the multiple IVIG infusions that will heal his body.

I am in contact with the IVIG company to order an infusion out-0f-pocket because we cannot wait any longer. He is at home, but on IV fluids and medications. My job is to continually call the company, reminding them that we are ordering the IVIG today whether insurance pays or not. It is urgent.

I am sure you can empathize with our exhaustion, frustration, and worry. For weeks I was so angry with God that I had a hard time praying. Instead, I asked the Blessed Mother to pray FOR me. In turn, Mother Mary filled me with peace and hope.

One night as I tried to comfort Drake, who was crying because of pain and nausea, I held him in my arms and massaged his neck. My mind flashed to the image of the Pietà, where Mary holds Jesus in her arms after His crucifixion. I have tasted a glimpse of what Mary felt watching her Son suffer. Like Mary, all I can do is leave the healing up to God.

Now, I’m no Mary, and Drake would attest that he is no Jesus. 🙂 However, he is very, very sick. Could you spare a moment to pray for Drake? He is especially comforted by the Divine Mercy Chaplet (for directions CLICK HERE).

Here is a picture of Drake a couple days ago on his 13th birthday, trying his best to enjoy a milkshake:

 

Dear Jesus, we come to you in prayer asking for complete healing of Drake’s body. We know that Drake has a future that is important in bringing others to Christ and glorifying You. Please help the IVIG to heal him. Please convince insurance to cover the multiple infusions that he needs. Whatever happens, we accept that it is in Your hands. Thy will be done. Amen.

***Update:  Our insurance has denied coverage for the IVIG, but we will appeal. Drake will receive his first IVIG on Monday and Tuesday. Praise God that he can begin healing.

For the sake of His sorrowful passion, have mercy on Drake, anyone physically or spiritually sick, and the whole world! Thank you for your prayers!

Finally—Baby #10’s Birth Story!

Life is a whirlwind these days adjusting to baby #10’s arrival. My days fly by. I nurse the baby, feed the other kids and keep them from fighting, do a load of laundry, and then repeat it all. Until it’s blissfully quiet after they go to bed! 😉

I have had several people ask about my birth story, which is incredibly sweet! Now that the oldest seven kids are back in school, I finally have a chance to write about how it all went down.

My original due date (which we all know is just a guess) was June 26th or 27th. I already forgot. Oops.

I knew without a doubt that the baby would be at least a week “late.” No doubt I got my hopes up a little with all the strong Braxton Hicks contractions, but I was expecting a 4th of July baby.

Well, the 4th passed by with barely a contraction. It was so strange! At 38 weeks my body was having tons of false labor, yet once my due date came (and went) my body stopped contracting at all!

I nested. I rested. I tried to pray the rosary as often as I could.

This picture may be my favorite pregnancy picture ever! As I prayed, the baby in my belly kicked and squirmed like crazy. I tried to truly appreciate every moment, knowing the baby would be out soon.

At my 41 week midwife appointment, baby and I were doing great. I was dilated to 1 1/2-2 cm and baby was at 0 station. Nothing to get overly excited about. That night, I got very little sleep because I had light contractions every 3-5 minutes for several hours. Just as I thought about calling my midwife to come, I fell asleep on the couch. Obviously not the real thing!

At 41 weeks and 3 days, I had another night of light contractions every 3-5 minutes. They weren’t the real thing because they really didn’t hurt at all. I just couldn’t sleep because I was expecting them to turn into actual labor. I drank a bunch of water and they stopped.

The next morning, I was exhausted from so little sleep. We decided to call Mike’s mom to entertain the kiddos. “It” had to be any minute, so it would be easier to have her at our house anyway.

I slept the day away. It was wonderful! I had 2 or 3 contractions the entire day, and I went to bed very disappointed. I felt like I had called my mother-in-law to our house for no reason.

As we got ready for bed on July 7th, I was rocking on my birth ball to try to get things going. Nothing was happening, not a single contraction. I did a little reading, thumbing through my book of saints. St. Gianna, St. Gerard, Mother Mary, and every saint I could think of were praying for me to finally have this baby. As I drifted off to sleep, I learned that St. Anne (Mother Mary’s mother—Jesus’ grandma) was one of the patron saints of childbirth.

I woke up a touch before 1:00 a.m. on July 8th to use the bathroom. As I waddled out of bed, I had a STRONG contraction. I mumbled a quick “Please St. Anne, please, pretty please pray that this is the real thing….”

About 5 minutes later I had another very strong contraction, so I called my midwife. I felt silly telling her I had had two contractions, but I did it anyway. I told her I thought I had a little while but thought it best for her to go ahead and get to my house.

The rest of labor was a complete blur. I had contraction after contraction. They were STRONG and LONG and quickly settled into about 2 minutes apart. I couldn’t think straight. When I opened my eyes, I would see Mike either glancing to see if the baby was coming out or looking out the window for the midwife.

I reassured Mike we had awhile to go because I wasn’t nauseous yet—in my nine previous births, I thought I might throw up right before baby came. I was actually starving but afraid to eat, so I felt like we had quite a bit of labor left.

At that point, none of the positions that usually help me with the pain (standing and swaying, sitting on the birth ball) were helping. I remember being on my knees leaning on the edge of my bed almost crying. I told Mike maybe I was getting old and couldn’t handle pain anymore!

The only position that helped me was to sit criss cross applesauce on the floor (I had spread a plastic sheet and chux pads on the floor in case my water broke). The light pressure of the floor on my tailbone helped a bit.

At last the midwives were at our house! I breathed a sigh of relief, and Mike went downstairs to let them in the front door. It was about 1:45 a.m. Over the sound of the white noise machine in the hallway, I heard some nervous chatting and laughter as they brought in the equipment.

I had a contraction (still sitting Indian style on the floor) and involuntarily pushed. OH *%#@! was all I could think. I reached down and felt my bag of water bulging out several inches. It was the coolest thing, like a thin water balloon ready to pop!

I tried to yell “HELP!” but it didn’t come out very loudly because another monster contraction started. I hiked my right leg up,reached down to tear my bag of water open, and PUSHED!!!!!

My scream—that universal I-am-pushing-out-a-baby scream—brought the whole house running into the room. The details aren’t clear about who reached our bedroom first, but I will never forget Grandma Cynthia’s look of disbelief!

Baby’s head and shoulders were out, so my midwife had me lean a little to the left so I could push the rest of baby’s body out. What a relief!

I was so excited! Was it a boy or a girl? I had been dreaming of holding this little one for months, and finally I would know!

I scooped my baby up, which was a little tricky because the umbilical cord was still connected to me. The cord was so thick and went tightly right between baby’s legs, so it took a few seconds to move it out of the way….

It was a girl, the daughter I had prayed for months ago!

The kids all gathered around to meet their new sister! I was helped up from sitting in the floor and sat on the edge of my bed holding her. We all admired her dark hair. She was alert and calm, taking it all in!

The umbilical cord had stopped pulsing, so Mike cut it. We had everyone go downstairs while I stood up to deliver the placenta—yes, into the popcorn bowl just like my three other home births. I jumped in the shower while the midwives threw the top layer of sheets in the washer for me.

The kids all came back in to watch us weigh, measure, and examine their little sis while I ate a big bowl of gluten free rice crispies! I was still starving! We all guessed her measurements. Was she 8 lbs? 9 lbs?

She measured 19 1/2 inches long and weighed 8 lbs 10 oz. A short, chubby little thing!

Of course, the best part about a home birth (besides not having your baby in the car after a 55 minute labor) is after the birth. We held and snuggled our new baby, talking about baby names the entire time.

The kids all had their ideas of what to name her. Maren wanted to name her Roses. Britta preferred Rosalina. My list was huge, but I knew what Mike’s favorite name was.

We decided to sleep on it before making a final decision on her name. The midwives left,and the kids went back to bed. By some miracle, we actually slept in till about 8:00 a.m.

In the dark, peaceful morning hours, I got to know my little girl. I put the sweet little white crocheted hat on her head (lovingly made by big sister Kelsey) and just stared at her. We had our first “talk.” I felt her long skinny toes and the arch of her feet. I giggled at the fine, dark hair on her earlobes and small of her back. She had adorable little fat rolls on her forearms and quite the double chin. We nursed, and I pressed her soft cheeks against mine. Thank you, St. Anne, for getting the ball rolling on my labor. Thank you, God, for letting me experience this again. Surely holding a new baby against my chest is a small glimpse of how wonderful Heaven will be.

Morning came, and we had to decide on a name! Was she a Lena or Camille? Lorna or Petra? Simone or Audra? Martina or Thea? Maybe I should consider incorporating a version of Anne in her name since St. Anne’s prayers finally got labor started for me?

We finally had to pick, and we decided on our favorite:

Petra Felicity

Now, I know it’s a touch different, which is why we love it. We love girl names that are feminine, yet not overly frilly or hard to spell.

Petra is a form of Peter. Who better to name our beautiful daughter after than St. Peter? After all, St. Peter denied Christ three times, yet went on to lead the early Church, beginning the passing of written and oral tradition down from apostle to apostle. Even today, 2,000 years later!

We also love that St. John Paul II beatified Blessed Petra of St. Joseph Perez Florido in 1994. For my non-Catholic friends and family, Blessed Petra needs one more approved miracle to be called St. Petra. If anyone knows where I can find out more information about Blessed Petra, please let me know in the comments! I would love to know more about her!

Felicity is after St. Felicity. We loved how a more feminine, frilly middle name paired with Petra as a first name.

I have so many blog posts to write—they are floating around in my sleep-deprived brain! Maybe I will have more time to write…someday! Until then, thank you for reading! I would appreciate prayers. We are doing very well. I feel great, little Petra is healthy and such a sweet baby. It’s just quite a job keeping up with everyone. Couldn’t imagine doing it without my amazing husband. Truly, with God, all things are possible!

God bless!

Happy Crappy Father’s Day! (When Life Gets All Screwed Up)

As usual, I’m a day late and a dollar short. Or several dollars short.

My sister-in-law texted me this picture this morning, and WOW! does it describe my life right now.

Father’s Day was everything it wasn’t supposed to be for my husband. We were rushed, snapped at each other, and ended up just plain surviving. I felt terrible about it, but it seemed like the more I tried to fix it the more it got screwed up.

Mind you, nothing catastrophic has happened directly to our family. The biggest blessing of the day was that we all made it to mass together. Two kids were altar servers, one blessed us by singing in the choir, and the rest of the kids behaved well enough for us to actually listen to the readings and homily. As a family, we brought up the gifts to the altar, which filled my heart with happiness.

Life with the tenth baby coming any second is not always easy. Throw in a baby who tried to break his foot, never-ending house projects that can’t wait, a dance recital, a horse show, and three kids in baseball, and it feels like a whirlwind of survival. It seems like ever since my grandma’s funeral we have been running nonstop. Some close family members have been going through tough times, and all we have been able to do is pray nonstop for them. My body is worn out and tired of carrying this big baby around all the time. It seems like I am in early labor constantly, and Mike is dutifully picking up the slack.

I wish we could fast forward a few weeks to when the baby is here and we have adjusted. That’s ridiculous, though! I don’t want to wish one second of my life away! The hard, crazy times are when we lean on God. Nothing else can get us through it. The peace that we are left with is only the peace that can be Divinely given to us. For that we are grateful.

Here is what I had meant to tell Mike on Father’s Day—

This picture of the Holy Family is how he makes me feel. Mike has always been our protector, just like St. Joseph. I know that places an enormous amount of pressure on him, but he handles it well.

I have no idea why God has entrusted us with ten precious souls to raise. Many couples struggle to have one or two children—why does He think we can do a good job with ten?

Maybe that’s the whole point. We can’t really do a good job of parenting without His help. St. Joseph is storming heaven with prayers for us. We’ve got this.

My prayer is that our sons can grow up to be just like their daddy, and our daughters will marry men just like him. All that crazy stuff in between? That’s the amazing life God has given us.

“Buckle up, baby, it’s a bumpy ride….” ~true words sung by Jon Bon Jovi 😉

Small Success Thursday: Blessings in the Busyness

It’s already Thursday, and this whirlwind of a life I am blessed with has me hanging on, just like Barb wrote over at CatholicMom.com! What are your successes for the week? Sometimes just surviving and not biting everyone’s head off when it’s busy is a huge success!

I’m going to jot down a few of the successes I have had over the last week, just to remind myself how blessed I am.

1. This morning, little Brooks was wallowing around in two huge laundry baskets of clean towels that I needed to fold. I hadn’t changed his diaper yet, and he leaked toddler poo all over the place. My success was not getting upset. I didn’t really have time to rewash two loads of towels, but apparently God thought I needed to do just that today!

 

 

This delightfully fun event kicked me in the rear, and I finally ordered two new bamboo and fleece fitteds to hopefully be our nighttime cloth diapering solution. I had been lazy and using a disposable at night, which for the most part I am OK with. However, disposables leak poo. Cloth diapers very rarely blowout. Hopefully we will love the new fitteds!

2.  I am nesting like crazy for the baby. I bought my birth kit and supplies for the home birth, set up my home visit for my midwives, and pretty much have everything I need. The next 6-8 weeks will fly by. I plan to sit on my behind as much as possible, just resting and truly enjoying these last baby squirms and kicks. This may be the last time I ever get to experience it all! Who knows? Only God, I suppose.

St. Gerard, St. Gianna, Mother Mary, and St. Raymond, keep praying for my pregnancy!

3.  Tonight is my grade school kids’ spring concert. I have all their outfits ready. Well, kind of. They are ready in my brain, I just have to pick them out. I can’t forget kleenex because I will probably cry during my 8th grader’s performance. She’s moving on to high school next year!

4. Over the weekend, we attended my grandma’s funeral. My heart is full of love for her. God sent us the coolest sign at the cemetery. Grandma loved hummingbirds, and while we prayed and said our final goodbyes to her, a hummingbird flew around her casket. We all smiled and laughed, thanking God for her life and for the eternal life we all look forward to.

 

Pray as though everything depended on God. Work as though everything depended on you.  ~St. Augustine

 

I will include extra laundry in my list of “work” I did today! Have a blessed, peaceful week!