A Mother's Musings: When the Heavens are Silent

Through Addie's entire life (these past 16-months), I have sought counsel from the Lord as to how to proceed in her care, what resources I needed to look to, how I could advocate for her, and basically what is the best way to help her.  However, I have neither felt nor heard the Lord's counsel.

I felt like the author of the poem "Footprints in the Sand," who queried God:

"LORD, you said that once I decided to follow you, you'd walk with me all the way.

But I have noticed that during the most troublesome times in my life

there is only one set of footprints.

I don't understand why when I needed you most you would leave me."

I knew that if He would just answer me, I could move forward with confidence in what Addie needed--I could demand the doctors to give her good nourishment instead of taking away her mother's milk; I could say no to drugs; I would know what genetic tests to order; I could wean off her seizure meds with certainty instead of self-doubt. I could just act in Knowledge of what would work instead floundering in Faith of what I hoped would work!  Wouldn't that be better than me bumbling along and making so many errors in the life of this fragile gift from Heaven?  Surely Heaven wants me to succeed in this most important endeavor.  Why the silence?

I analyzed my life thoroughly over and over to see if I had breached my covenants in any way that would prevent me from receiving answers.  I asked for understanding behind such limited, counsel sent my way. Was I too tired? Yes. Too time-constrained? Yes.  Too mentally and emotionally preoccupied? Absolutely. The state of my life then and now isn't going to change any of those barriers to revelation, so I prayed in repentance for a way around them.

This month, as I worshiped in the temple, I pondered again how I could get the heavens to unlock for me to give me the revelation I seek on so many matters--not only Addie.  As I performed Initiatory ordinances, I listened intently to the promises given.  Suddenly, my mind and heart felt enlightened.  I realized that I have been promised a mind that can decipher between options.  If I'm not receiving guidance from God then He must trust me to exercise the intelligence he's already given me. He must trust that I can take care of Addie and all my other assignments. He expects me to "use my brain!"   I had to laugh at that!  I also felt humbled.  Here the wisest Man in the universe, who could so readily give me the answers I seek, knows I will grow in wisdom if I learn to use the mind He's already blessed me with.

Put another way, Sister Sharon Eubank spoke in a Relief Society Fireside in my Stake earlier this year.  She said that President Packer once said in a meeting regarding receiving revelation: "If the light is green, its always a Go." Another image that comes to mind is the way an Islander taught his kids to swim: he simply tossed them out of the boat into the ocean.   If the Lord gave us instruction and counsel on everything, how would we ever learn to think, to test, to explore, to grow?  We need times of silence to stretch our capacity to become as He is: able to "counsel in wisdom over all His works" (Jacob 4:10).

Beware, however, of rationalizing away His command to "counsel with the Lord in all thy doings" (Alma 37:37). He may choose to be silent for our personal growth, but we need to ever seek His counsel regardless. To do otherwise, cuts us off from Him by eroding our faith and trust, for we have been commanded "to repent and call upon God in the name of the Son forevermore" (Moses 5:4).  

Knowing that there are times the heavens are just going to be silent for our own growth, we can take confidence, after ensuring we are keeping our covenants, that God trusts us.  We can move forward with faith in Him, His work, and especially in the faith He has in us. Then, we can conclude as does the final stanza of "Footprints in the Sand:"

"My precious child, I love you and will never leave you

Never, ever, during your trials and testings.

When you saw only one set of footprints,

It was then that I carried you."

Addie Update: Indignation & Prayers Please

Good morning Family & Friends--

Little Addie is in the hospital once more.  Her need for oxygen superseded the home equipment’s capability to help her, so we took her to the Pediatrian on Thursday. After 5 minutes, she said, “Take her down to the ER. You’re going to Primary’s.”

While they thought she had RSV, the tests came negative for both viral & bacterial infections.  However, the x-ray looks like she breathed some milk into her lungs.  So--at this point, she has no infection (viral or bacterial), but her diagnosis is Aspiration Pneumonia.  

Will you please pray for her little lungs?  She needs to either cough or absorb that bit of fluid in there in order to expand her lungs to their full strength and get her O2 needs back to a normal home range.  

Meanwhile, here’s some political drama we faced at the hospital.  We informed the medical team that we are using CBD oil to control seizures when asked what medications she’s on. We were told we could not use it for her at the hospital. We insisted that this is the only thing that is helping Addie’s seizures, that we are trying to get to a therapeutic dose, and that we will continue to use it. Without it, it will be difficult to get her out of the hospital as much of the lung stress we see with her is in relation to cough seizures which keep her from oxygenating well.   We were firmly told that if we continued to use it, we would be kicked out of the hospital . . . Addie would stay--parents banned!  NIGHTMARE!!!!  INDIGNATION!!!

Additionally, there is NO other hospital in UTAH that will take children.  Every child HAS to be treated at Primary’s.  We could not take Addie anywhere else & be able to use her CBD. To be threatened like that when you are trying to help and advocate for your child is so emotional and so wrong. This direction came from the very top--the lawyers, CMO, etc.  Our doctor bravely sided with us against the hospital administration, and told us to keep pushing.  We produced our paperwork that legally allows us to use CBD oil in the State of Utah.  You only get this paperwork if the doctors at Primary Children sign off on it!???!!!  He took a copy back to the leadership of the hospital and we waited.  Before 5 pm, our good doctor came back with a message that we can use it, but that we needed to be silent about it (so now I’m shouting it out to you! :-).  Because of  the paperwork, they could not legally stop us.

God is gracious and good!  Here’s why: A month ago, I utterly refused to file the paperwork for my hemp certificate.  I felt angry that I had to pay a bureaucratic fee  and jump through all these red-tape hoops to help my child. I thought, “I just won’t speak about it, and no one will know.” An article from the Desert News said that ⅔ of patients qualifying for medical marijuana do NOT comply with the paperwork requirements but use the oil anyway.  Parents I spoke with also said, “Don’t worry about it.  They can’t enforce it.”  Despite my entrenchment, the Spirit kept striving with me.  I felt prompted three times to file the paperwork.  I kept arguing with the Lord why it wasn’t necessary, trying to rationalize away the promptings and getting him to see my point of view.  After working with me for 10 days, I knew I could not go against the strong promptings and remain in good standing with Heavenly Father.  So, I gritted my teeth, wrote out the check, and sent in my application.  As soon as the check went in the mail, a huge weight of fear lifted from my shoulders.  I did not realize how burdened I felt regarding CBD oil.  I recognized in hindsight that I had been  under attack by the Adversary.  All those chattering voices in my head ceased.  My mind and heart cleared.  I could lift up my head and boldly share my experiences about medical marijuana with others.  No more fear energy.  I immediately felt grateful for the promptings and for the Holy Ghost’s continued efforts to break through my stubborness.

“Verily, thus saith the Lord unto you whom I love, and whom I love I also chasten that their sins may be forgiven, for with the chastisement I prepare a way for their deliverance in all things out of temptation . . .” --D&C 95:1

I was chastened by the Lord in my temptation/sin to not comply with the law. I thought I just needed to submit to the crazy law to be an honest, good citizen of my state and of the kingdom of God, but He saw a lot more than I did.  The paperwork became indispensable to me in enabling me to help and stay with Addie.  I just have to shout out there: if you receive a prompting--FOLLOW IT. The God who sees all things truly will ​​provide deliverance.  Additionally, He will “go before your face . . . will be on your right hand and on your left, and  . . . shall be in your hearts, and [His] angels round about you, to bear you up” (D&C 84:88). I have felt that this week.

Humbled once again to my core--

Desi

Addie Update: Humble Pie--munch, munch!

A few months into Addie’s seizures, my friend Bridget called and said, “You may think this is kinda odd--but have you considered medical marijuana?”  My stomach dropped.  I replied, “Oh no!--that will be just my luck that that will be the only thing that works.  I’ve had to humble myself on everything else!  ” So munchy, munchy humble pie!  Thank you to Bridget for planting the seed that grew into our last hope!

At Primary’s, after Addie failed 7/14 seizure medications,  the neurologists told me that Addie qualified to use cannabis when I finally got up the courage to ask.  In the state of Utah, 1) if your seizures continue after trying at least three medications, 2) you receive a letter of recommendation/documentation sent to the State from the neurologist, 3) you fill out an application, and 4) you submit a $200 fee, then you can receive a “Hemp Card” that authorizes you to use medical marijuana for one year.  After that year, you continue to pay $50/year to keep your Hemp Card active & if you let it expire? $200 again!  Additionally, you must keep a laboratory analysis of the hemp product you are using to confirm that the medicine falls into the strict guidelines for CBD to THC  (medicinal vs. psychoactive parts, respectively)  ratios in medical marijuana.

The price for a 1 oz bottle of Hemp Oil ranges from $35-150.  The pricing and fees nearly scared me off from attempting it--the neurologist didn’t seem that confident that it would work for Addie.  A friend, whose child has seizures,  however, offered me a sample to test on Addie.  I placed the sample on my desk and “ignored” it for two days.  I felt so afraid of trying it only to have the neurologist’s predictions verified--that it wouldn’t help her. I didn’t know if I could face my last thread of hope taking flight.  

Finally, after days of watching my baby seize, we decided to try it.  I held Addie in my arms and uttered a prayer toward heaven as Chris dipped his finger in the sample and rubbed it on Addie’s gums.  Within seconds, Addie’s rolling eyes stopped, centered, and focused on my face.  She made a cooing sound and a giggling sound.  For the first time she seemed like a real baby--a healthy baby.  She was there--in my arms--her body and spirit connected and present.  I just wept. She stayed with us for about 40 minutes before the seizures began to take over again & she fled.  I felt so much awe and humility.

After complying with State laws, we started Addie on a beginning dose of CBD oil last Friday.  At the end of week one, her eyes have mostly stayed centered, she’s gained more rigidity in her limbs (instead of floppiness), her seizures have nnoticeably decreased, and she’s been very sleepy--restful sleep.  We are only on a beginning dose and we have a long way to move up the scale in hopes of finding a ‘sweet-spot’ where we’re hoping the seizures will perhaps disappear altogether! Prayers ascending!!

So back to my dish of Humble Pie!  I remember driving in my car last year listening to a debate on medical marijuana on talk radio and saying aloud: “Give them an inch and they’ll take a mile!”  I mentally entrenched myself against any legislation on marijuana in Utah.  I never researched it.  I acted completely out of prejudice and ignorance.  And, while I never spoke publicly regarding this issue, I’m publicly apologizing.  I’m sorry that I never even considered the opposing side to the argument,  and I’m sorry for my ignorance and callousness to the intense suffering of  so many parents as they stood helpless over the seizing children with no options except TERRIBLE seizure medications. Finally, I’m committing to never speak on any issue again until I’ve heard both sides and actually researched it!   

I stand on the shoulders of so many here in this state who pushed for this option for people.  I feel intense gratitude and humility once again that I have access to this medicine without having to pack up and move to Colorado.  Parents waited YEARS for this option, and I only had to wait a few weeks to receive authorization from Neurology.  Epileptic children marched ever more toward physical and mental disability, increasingly addicted to ridiculously harmful seizure meds, as their parents persistently marched on Capitol Hill to get access to medical marijuana in Utah. I am undeserving of my blessings.  Because of their efforts, Addie has a chance to get control of her seizures, wean off her brutal seizure meds, and progress toward more normalcy.  I’m humbled to my core.

As this legislative session is upon us nationally and in our states, I hope you’ll share my experience with people so that only I have to swallow humble pie.

Lastly (and Firstly), I acknowledge the Creator who truly did  fill the earth with “excellent qualities of the many plants and roots which God had prepared to remove the cause of diseases, to which men were subject” Alma 46:40 . His name be ever praised as the Mighty Healer and Great Physician.

--Desi

Mom and Baby Update

Hello friends and family.  This is Chris.  The past 24 hours have been a whirlwind, but all is good.  Adelaide Elizabeth was born yesterday at 5:08 p.m. at the IMC in Murray.  The doctor saw additional fluid starting to pool around the liver and felt we should proceed with the delivery immediately.  Desi was taken down to the delivery area and induced right as the solar eclipse was starting.  It took about 7 hours, but Addie was born vaginally without any complications and without any intervention from the doctors.  Addie was quite swollen and lifeless due to all of the fluid in her tummy and head.  They immediately passed her through a window into the NICU unit where they got her breathing with an oscillator and drained the fluid from around her lungs.  I was not able to see her until 10:00 p.m.  Unfortunately, Desi had run a fever and was coughing due to the stress of the delivery.   She was not able to see Addie until this morning when her temperature returned to normal and her cough went away.   Addie has tubes inserted in both sides between the ribs, where they continue to drain any fluid that her body does not absorb.  She has an IV inserted through the umbilical cord where she receives food and antibiotics.  The only trouble they have had is getting the right balance of oxygen through the oscillator.  I believe one lung is stronger than the other, so they are struggling to get the right balance of carbon dioxide.  Addie is in an incubator and cannot be held.  She is sedated and does not move much, beyond her vibrating chest.  Her head and face is still quite swollen, but the rest of her body looks more normal and is pink.  She was 5 pounds 7 ounces after they drained the fluid from the lungs.  They said that she still has a lot of fluid, which is inflating her weight.  

Desi was up and showered at 6:30 this morning.  Her doctor did not want to discharge her, but has no more reason to hold her now that her fever has broke and her white blood cell count is normal.  Desi is hoping to come home this afternoon.  The baby will remain in the NICU unit until all functions are essentially normal.  They told us to plan on her due date, which is around Oct 21.  If she does well, they will release her sooner.  Babies do not learn to suck until 34 weeks, so it just takes time for the baby to complete her development. 

We want to express our great gratitude and love for your faith and prayers throughout this experience.  Some may feel that the fast on Sunday was not effective, but you must know the miracle that took place.  Saturday night as I opened my fast and prayed for impressions as to what the Lord's will was, my mind was filled with several negative potential outcomes.  I began to panic and was filled with anxiety and fear.  I worried that the thoughts were preparing me for the worst.  However, I quickly recognized that these thoughts could not be from the Lord (Thank you Gentri).  I knelt back down and cast out the evil spirits that had tried to take over my mind.  The feelings of fear and panic immediately left.  Sunday morning, I had sought out the Lord again for direction.  In pondering again, I received clear direction as to the Lord's will.  This was confirmed again at Church during the sacrament.  As I blessed mom and baby later that day, we knew that Addiewould be coming soon but would be healed in the process.  We didn't realize she would be coming the very next day, but I guess Addie was very anxious to get here.  We feel very blessed to have her and see the hand of the Lord in getting her here.  This knowledge was very comforting to both of us yesterday.  We remained calm throughout all the excitement of the day and knew that everything was happening according to God's plan and will.   Thank you to all who have offered assistance and continue to ask us what can be done to help.  I am sure that next two months is going to seem like an eternity and will keep life interesting, so there will be many days in the future that we will welcome a break from the busy routines and work.  We will keep you updated with Addie's progress.  She has her mother's determination and fight, so she will be coming home earlier than expected.  You can count on that.

Thanks again.

Chris and Desi