The other side of the cot

In the past two years, Ive had quite a bit of experience being on the other side of the cot.  Instead of being the nurse, Ive been the one needing a nurse.  Its provided a unique perspective.

I went in yesterday for a cardiac stress test.  When I had my tilt table test, my EKG showed that my heart is not getting enough oxygen when it is working hard.  The point of the stress test was to see how significant this ischemia, or lack of blood flow, was.  The doctor wanted me to have it done in Cleveland when I was there last summer, but I needed to get home to my kids.  I assumed, that based on the Cleveland doctors recommendation, I would have no issues doing this very routine test locally.  Boy, was I wrong.  My cardiologist here has been less then supportive or helpful.  My primary agreed to order but then the insurance wouldnt cover.  Long story short, Ive fought for 11 months to get this test ordered and covered by insurance.  Meanwhile, Ive spent every day dealing with chest pain and not knowing the significance of the pain.  So, when we finally got the OK to proceed with the test, I was elated.  This test was going to provide the information for us to know how to proceed.

I spent the day before the test fasting from all of my favorite things…coffee, chocolate, wine…I was to stop eating altogether after 12am.  I arrived to my 9am appointment hungry, foggy and a little weak from not eating, but so excited to get it over with.  “This is gong to give us so much closure.” I told my husband on the walk in.  We waited for about 45 minutes before they called my name to go back.  They wouldnt let Darren go with me.  I can handle myself.  Im the nurse.  But, he is my protector.  I always struggle leaving him in the waiting room.  After yesterday, Im sorry that I did.

The nurse who came for me seemed kind, though quiet.  Before she introduced herself, she ushered me into a bathroom where I was told to leave a urine specimen for a pregnancy test.  “Well, how do you do” I thought to myself.  Pregnancy test is standard procedure but you could at least say hello before you ask me to leave you my bodily fluids.  Whatever, must be a busy day, I rationalized.

After leaving my “deposit”, we rushed into another room.  At this point the nurse introduced herself and made some small talk.  I was beginning to relax now.

“I’ll need to place and IV and inject you with this radioactive isotope called cardiolite”

“Im sorry, what?  I called ahead and got a list of medications that were to be used so I could clear them with my lactation consultant.  This med as not discussed.”

“Oh well, its the med we are going to use.  You are nursing?”

“Yes, Im nursing.  We ordered this test, specifically,  because its supposed to be compatible for nursing.”

“Oh, well, I need to give you this cardiolite and you will have to pump and dump for 48 hours.”

“Well, I need this test, so I suppose we will go ahead and I will just figure it out.”

The nurse injected the medication and ushered me to the locker room.  There, she instructed me to change and put on a gown.  I asked if I could keep my bra.  She said no, it would interfere with the EKG leads.  I explained how I had chosen a bra that fit so that the leads would not be affected and asked her to look.  She said the bra had to go.  “But, Im nursing”, I tried to explain.  “It will be painful and not to mention messy, to run on a treadmill with no bra”.  She asserted again that the bra had to go.  “Once you are dressed, go across the hall to the waiting room.  I’ll meet you there”.  I did as I was told and put on the gown.  It was about 13 sizes too big and even when tied, didnt cover much.  I searched the locker room cabinets for a blanket or another gown to be used as a robe, but came up short.  I was freezing, hands and feet turning purple from the cold.

I covered myself as best as I could and headed across the hall to the waiting room.  I was shocked and embarrassed to see the waiting room was co-ed.  A bare chested man looked up as I entered the room trying my best to conceal the naked under my gown.  I sat in that waiting room shivering for over an hour.  The man next to me tried to make small talk.  I think he knew I was uncomfortable.  “What do you think of our new President” he asked.  I tried my best to answer his questions and smile, but inside, the cold was beginning to hurt.  People with POTS struggle to normalize and maintain their body temperature.  The more I shivered, the more I hurt.  A migraine set in.  Black spots and flashing lights clouding my vision.  I felt a drip on my belly and realized, I was now leaking milk.  It had already been six hours since I had been with my baby.  My body was reminding me.  I shifted in my chair trying to keep my chest covered.  “You are awful young to have heart trouble arent you?” The man next to me asserted.  I smiled and sighed.  “Yes, I sure am.”

Finally, after an hour the nurse came to get me.  “Come this way please.”  So we walked briskly down the hall, with me fighting the gown and trying to discretely hold my breasts the entire way.  How awkward.  I gave up my dignity in hospitals a long time ago, but there is no reason to completely reject modesty!

“You will lay here.” The nurse said.  Now, Im familiar enough with how stress tests work, that I could guess that we were here to get resting images before the exercise portion of the test.  But I was really looking for some explanation.  I tried asking a few questions, both for my understanding and so I could also understand better for future patients.  The nurse answered my questions, but with brief remarks.  I climbed up onto the Gamma camera table and laid down as I was instructed.  No further instructions were given.  The camera closed in around me, so that I really couldnt see any of the room.  I wondered if the nurse was still there or if I had been left alone?  I laid on the table for close to 15 minutes.  Then a man stepped into my peripheral vision and said the scan was over and he would be taking me for my next step of the test.  “Oh!” he remarked as the table slid out from under the machine.  “You are very young!  We dont often get young people here.”  “I am young.”  I said back.  I wish people understood how deep that comment cuts.  Thank you for reminding me how young and also broken I am.

He took me down the hall and left me in a room.  I was told a nurse would be there soon.  The room was empty.  No magazines, no TV, no window.  Just me and my thoughts.  I wasnt excited about the prospect of staring at a blank wall, but I was happy to be in a room alone.  Finally I could curl up in a ball and try to get warm without worrying about flashing the world.  “Im so, so cold.” was the only thought I could muster.

The next face that I saw, introduced herself as Jennifer.  Right away, I knew she was a good one.  “Hello, my name is—Oh my girlfriend, you look like you are freezing!  Im going to get warm blankets be right back.” Not a minute later she came back to the room with three warm blankets.  She wrapped me up tighter than a new born baby.  I could feel my heart rate calm.  The pain in my head subsiding.  Relief.

Jennifer took a moment and explained the next steps of the procedure to me.  She checked my arm band.  She asked about my medical history.  She started hooking me up to the EKG leads while simultaneously maintaining eye contact as I spoke and working to keep me as covered as possible.  She was calm.  She moved quickly, but did not seem rushed.  She was empathetic and warm.  I felt so at ease.

Suddenly, just as she placed the last EKG lead, we were interrupted by the male nurse who had brought me to Jennifer.  He barged into the room without knocking.  Make that person number 392 who have seen my breasts today.  “STOP!  STOP WHAT YOU ARE DOING!  WE CANT PROCEED!”  Jennifer and I looked at him confused.  He went on to explain, that because I am nursing, the isotope they gave took up in my breast tissue and the heart couldnt be visualized.  The images we had taken before were “non diagnostic” and we could not proceed with the test.

I stood there shocked and confused.  I began to tear up.  I looked at the male nurse and I said “Ive waited a year for this test.  Is there something else we can do?”  The male nurse explained this and that…all things I know are hogwash we nurses tell patients when we know we have screwed up and want to blame the situation on some sort of red tape over sight.  His lips were moving but I wasnt listening.  I could already see I had lost this battle.  He wasnt going to advocate for me.  “Ill call the doctor and see what we can do”  he said.  Before I could even process, there I was again, alone in that room.  No clock, no window.  I wondered what time it was.  I wanted to ask them to call my husband and update him, but i realized I had no call light.  I had noticed on my way down the hall that there was no nursing station in sight.  The halls were oddly empty and quiet.  I decided to settle back into my chair and just wait.

As I had a moment to reflect, the tears started falling.  The test I had fought so hard for, the test that was supposed to tell me if my heart was in danger, would not be happening.  My baby is home, sick, and I know he will want to nurse when he sees me.  I cant.  Im literally radioactive.  The thought of him screaming for me and not being able to meet his needs made my stomach churn.  I felt alone, I felt discouraged, I felt betrayed.

Then I heard it.  Male nurse is on the phone assumingly talking with the doctor.  I hear him.  He is laughing.  He is making light of my situation.  Telling the doctor “its no big deal, we can just schedule her another day for another test”.  I hear him, on his way back down the hall discussing his lunch plans with another co-worker.  Its been 13 hours since my last meal.  My misfortune is his early and extended lunch period.  The nurses are all crowded outside my door now  They are discussing “what to do with me”.  I hear the male nurse says something along the lines of “I dont want to deal with her.  She’s crying”.  Another nurse says she doesnt want to be involved.  “I dont want to tell her”.

When the door opens, its a new face.  I knew right away, what this face meant.  Defeat.  This person explained that “because I was lactating”.  She explained it like this whole fiasco was my fault.  She explained how the isotope is actually used in breast imaging so its not surprise that we couldnt see the heart because of the breast tissue.  All of what she told me was very true, but she explained it in a manner that made it seem to be my fault.  She told me that the test would not be done, and that I would have to go home.  The way she spoke to me was in such a way that I felt that they thought I was going to make some kind of a scene.   She talked to me as if I was a threat.  Like I might shoot the place up if I didnt get my way.  I was so confused as to why I was being treated like this.  I had not said three words all day.  I had not been cross.  I had not done anything.  I felt violated.  I was angry  But still, I said nothing.  I asked for my husband to be called so he knew why I was taking so long.  So I could tell him what happened.  They refused to call him.  They left alone again int he room with no windows or clock.

The tears were flowing freely now.  All i could think about what how I had failed.  I should have done more research.  I should have known.  I shouldnt have allowed them to inject me.  Ive failed my baby.  How will I ever find out if my heart is ok?!  How do I even start to get answers??? I started worrying about the day of work that Darren missed and how he would have to miss more days so I could see the doctor to get a new plan and hopefully schedule new tests.  I was worried about the bills that would follow for the tests that werent done.  I was worried about how missed days of work would effect our finances.

Jennifer came back into the room.  She was quiet this time.  Her eyes were understanding.  She acknowledged my frustration.  She took the EKG pads off, little burn marks left behind from my tape allergy.  She retied my gown.  The patient advocate lady was in the doorway now rushing her to get done with me.  “I know its against protocol but just take her IV out here so we can get her going”  She said.  Jennifer was quiet and dilligent.  I could tell she felt like she was between a rock and a hard place.  No more words were spoken.  She took the IV out and handed it to the patient advocate for proper disposal.  It was made clear, through the yellings down the hall, that “That thing is radioactive and needs to go in the lead sharps”.  I know they were right, but yelling about it down the hall made me feel dirty and unclean.  I wanted to say it out loud, but I refrained. “Just shut up and do the task, we dont need a play by play.”

Jennifer escorted me back to the locker room.  She told me to get dressed and “have a good day”.   Thats a funny joke, huh.  Me, Im going home to my sick baby that I cant hold or nurse and Im going to listen to him scream at me while my husband tries to get him to sleep and the other children run wild through the house.  Sounds fun doesnt it??  I put my clothes back on and opened the locker room door.  I wanted to just leave so bad.  But there I was again, alone in the hallway, uncertain of which way was out.  After wandering for a few minutes I found a nurse and asked which way to go.  She never looked up from her computer, just pointed to the door.  The tears started falling again as I pushed open that door.

When you are in the moment, you dont realize you are being bullied.  You are just trying to survive.  The scenes are overwhelming.  The information, the papers to sign, the feelings of vulnerability…even for a seasoned nurse, like myself, being on the other side of the cot is overwhelming.  There isnt a feeling quite like being 100% at someone elses direction and mercy.  You dont have rights.  You do what you are told and how you are told to do it.  You trust the medical staff to have your best interest and safety in mind.  You rely on them to be your advocate.

24 hours have passed now, and Ive done quite a bit of reflecting on yesterdays events.  No one checked my arm band.  I could have been anyone.  I could have been completely in the wrong place.  No one asked for a medical history.  No one took vitals.  No one checked my arm band before delivering radioactive materials into my body.  The nurse who administered the medication obviously did not know that it is also used for breast imaging and that it would not be an appropriate drug for a lactating mother, or she would have never administered the drug.  The test would have been stopped or altered before the patient was unnecessarily radiated.  The nurse could have advocated for me to keep my bra and not only made me more comfortable, but also would have more appropriately met my biological needs.  The nurse could have offered a warm blanket.  The nurse could have instructed me how to call her for help if needed.  The nurse could have explained the procedure to me and told me what to expect. So many very small changed could have altered the experience completely.

Nurses, I know you are busy, understaffed, overworked, tired, haggard.  I know you probably havent peed since your shift started.  I know.  Im one of you.  I give a whole lot of grace because I know how it is.  But being on the other side, I see now, how crucial it is, to take the moments.  Tell your patient your name.  This simple process of introducing yourself and explaining to the patient what cares you will be offering can literally make or break the encounter.  Be mindful of your words.  I know that a twisted sense of humor is what gets you through the day.  This job is hard and laughter is crucial to survival.  Listen, you want to make jokes, I give you that permission.  But for gracious sakes, dont do it outside of my door!  Take it to the freaking break room!  Nurses,  you are the font lines.  If you dont advocate for your patients, no one will.  You have the power to change situations.  You have the power to get things accomplished.  Speak up.  Tell that doctor what you need and how you would like to accomplish it.  You are not the doctors slave.  You are an educated individual with first degree knowledge of a patients situational needs.  ADVOCATE.  Yes, it takes more time and more effort.  Yes, you may get shot down or yelled at.  But I can tell you, form both sides of that cot.  The moment you affect change, everyone wins.  Nurses, those pesky protocols that we get so frustrated at because they eat up our time, they are in place for a reason.  Asking me my name and date of birth 8 times a day, every time you pass pills, seems silly, but you know what?  It keeps both the patient and the nurse accountable.  Please, please, please follow protocol.  Check arm bands.  Know about every med you are administering.

Yesterday was pretty awful.  The good news is, the nurse gave incorrect lactation information and it was safe to nurse my baby after 6 hours.  I had to call the lactation staff at another hospital to verify that information after doing a lengthy review of the literature myself.  So, I was able to come home and nurse my sick baby.  By the time I was able to get to a restaurant for food and water  I was almost too weak to walk in myself.  If the nurses yesterday had known about POTS, they would have know that fasting from water that long was dangerous.  I still dont know if my heart is ok.  I have no idea what my next step will be to figure that out.  What I do know, I I will be following up with the managers and Sisters about my treatment yesterday.  Not because I want to get people in trouble or want revenge, but because what I experienced was medical bullying.  I will be the voice of change and the advocate for all of those to come after me.  I hear you patients, I hear you and I stand with you, from both sides of the cot.

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Here we go again…

God doesnt always choose to speak in a thundering voice, but when He does, you can be sure that it is to prepare you for what is to come.

These past three years have been filled with struggle, but God have been undeniably present.  He has chosen to speak to me in His thundering voice many times.  And every time, it has been followed by a command to take a step of faith.

Last year, after a year of being too ill to work for over a year, Darren and I were staring financial ruin in the face.  It was obvious that I had to find a job, but I felt so called to stay home with my kids.  We prayed for God to provide a solution that made His will clear.  He did.  I was given a job that I have no memory of applying for, that allows me to work from home and make a very decent amount of money.  Darren also took a step of faith starting a new career and also taking a sizable pay cut to do so.  This week when Darren and I received our W-2 statements, we were speechless to see, that in 6 months, we made more income then we did the entire previous year!  This extra income has allowed us to pay down almost all of our very sizable medical debt.  6 very large hospital bills paid off.  Just one more to go and we are on track to have that paid off very soon.

Earlier this week, I shared how God had used a verse in scripture that spoke directly to my need.  After a month of frequent passing out and awful air hunger, I read:

“They will walk and not faint”

I knew, because I had heard Gods voice so clearly, that a call to faith was coming.

Earlier this month I had some lab work done in preparation to see a new doctor.  This doctor has POTS herself, and says she has found remission.  I decided to see her in hope that she may have something different to offer.  I looked up the lab work results online.

I have Lyme Disease.

This is really good news and its also the absolute last thing I wanted to hear.  I devoted the last two years of my life to figuring out why I was so sick.  I researched hours and hours at a time.  I lost myself in the work.  The quest owned me in many ways.  But, I figured it out and I sought out doctors who could help and they confirmed the diagnosis. I cant even explain the peace I felt as that Cleveland Clinic doctor typed POTS and EDS 3 in my chart making it official.  After two years, I had answers.  Closure.

Getting officially diagnosed allowed me the ability to stop searching and focus on wellness.  I had accepted my normal and was actively finding ways to live fully despite the many limitations.

But now, now there is a new diagnosis.  The good news is, there are treatment possibilities.  The bad news is, they are poorly studied and not often covered by insurance.  Mainstream medicine does not recognize chronic Lyme even though we can test for it and easily see that it exists.

Ive really been struggling with this information for a few days.  I am gearing up for battle.  I know I will again need to become an expert in my own health.  A researcher.  But, I do not want to loose myself in the task.  Ive worked so hard to find myself these last few months and Ive been good, so good.  My marriage is good, my self worth is growing, our finances are stable, Im so much more calm.  Wellness is an investment.  I know that I want to be well, but I also dont want to send my family back into financial insecurity to achieve it.  There must be balance.

“They will walk and not faint”

Perhaps this phrase wasnt given to me just as a sign of hope.  Perhaps, its a prophesy for my life.  Maybe, God is telling me what I have to look forward to?  Perhaps, God is calling me to see, that He has been orchestrating this all along.  He knows our needs before we do.  He knew we needed new jobs, not only to survive, but to survive what was coming.  He knew I needed a time of recuperation before I could be ready to handle another diagnosis.  God is orchestrating all of this and simply asking me to trust Him.

I’ll admit, the last three days I have felt fear and doubt and emotions I dont even have a name for.  I dont want to fight any more.  I am so weary of this fight.  But I am promised renewed strength in exchange for my faith.

So, Im choosing to trust.  Will you pray for me?  Not just for wellness, but for balance.  To know when to research and when to take a break.  To know how to financially invest and when to say no.   There is a good chance that I may get sick again as we work to kill the lyme.  There is a good chance I may get very sick.  But it will be temporary.  Will you pray for strength for me and for my family?  There is a possibility that I have passed this infection to Levi and that may be a very big piece of his puzzle as well.  So I have to go through this to know what will work for him.  Im praying hard that this new information is what we have been missing.  Im also afraid to let myself dream of a day when I am well.  I feel very pulled in every direction and its so hard to process a coherent thought.  Please pray for clarity.

My appointment with the new doctor is Feb 16.  At this appointment we will discuss the labs in detail and begin to put together a plan for what treatment will look like.  This will not be a quick thing.  Its a process, to say the least.  Thankfully, I had considered the possibility of chronic lyme in the past and already have a pretty good understanding of the condition.  Between now and February, Im going to do nothing but continue to be committed to taking good care of myself.  The best way to prepare for battle is to go into it as a strong soldier.

Here we go again…

Like a ton of bricks

I was looking up some verses this morning in an attempt to encourage some hurting friends.  I ended up in the book of Isaiah.  I was reading and typing the words I thought may help my friend and BAM there I was, just sobbing on the floor.  Overcome with emotion.  The words pinged my soul.  Sometimes, when we least expect it, God grabs us by the shirt collar and gives us a little proverbial shake to reality.

Iv’e been trying so hard to be so normal lately.  Im eating well, despite not wanting to eat anything.  Im cooking even though looking t food makes my stomach churn.  Im doing more around the house.  Ive been exercising every day.  Ive set so many goals for myself and Im doing so well.  But Im weary.  When you start a lifestyle change, adrenaline keeps you going for awhile.  But then, muscles get sore and eyes are tired and its just becomes so easy to sink back into old slumps.  Its difficult to find balance with POTS.  Just because I can do things today, doesnt mean I wont pay for it tomorrow.  Knowing when to push and when to rest is an art Im still trying to master.

These 4 little kids need mama, so no matter how I feel, I get up and I make breakfast and wash faces and fold laundry.  I cook lunch and nurse the baby and change the diapers.  I havent been sleeping.  Its been weeks since I slept more than three hours a night.  I AM SO WEARY.  I shove that feeling and I press on, because thats what needs to be done.  You dont realize how weary you are and how much you have been compensating, until one day it just hits you like a ton of bricks.   For me that manifests, in shortness of breath and an irregular and fast heart rate.  It usually puts me on the couch.  If I try to keep going, I will pass out.  Its my body’s way of saying “enough”.  Its my body’s way of not giving me a choice but to rest.  I sit here feeling like I have failed.  I sit here and worry about all of the things I could be doing if I were normal.  Self pity and guilt try to creep in.  My husband will come home to a messy house.  My kids wont brush their teeth until bed time.  The laundry collects.  The kitchen sink fills with dishes.  All while I sit here.  I know I need to rest.  My husband and family knows I need to rest.  But, allowing myself to do so, is not easy.

But then I read these words and realize, Im not meant to carry this alone:

Why do you say, O Jacob, and complain, O Isreal, “my way is hidden from the Lord; my cause is disregarded by my God”?

Do you not know?  Have you not heard? 

The Lord is the Everlasting God, the creator of the ends of the earth.  He will not grow tired or weary, and His understanding no one can fathom.

He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall; 

but those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will WALK AND NOT BE FAINT.”

These words, I needed them today.  My God, he knows about air hunger and he knows about passing out.  He knows my desire it to keep going for my husband and for my kids.  He knows Im weary and he promises to renew my strength if I place my hope in him.  That doesnt mean I dont need to take time to rest.  It means I am allowed to rest.  This is not my race to run alone.  The strength comes from the Lord.

“They will walk and not be  faint”

BAM.  Cue that waterworks.  I needed these specific words.  So few people understand what its like to live with POTS.  The air hunger, the passing out, the stomach pains, the vision changes, the headaches…I look normal, but inside, im at war with my own body.  “Do you do this for attention?” , “Just push through it” , “it cant be that bad”, “Dont be so dramatic”.  I crave an empathetic ear.  I often feel like no one understands how hard I fight to be functional.  God knows.  He knows me because he created me.  Broken and POTsie me.  He created me with a very specific purpose.  He gives me the strength needed to complete my race.  Some day, be it here on this earth, or when we meet in eternity, He promises I will run and not grow weary, I will walk and not faint.  At that moment these words will change from metaphoric to literal.  How I hope for that day!  For now, I take hope in knowing that He knows this burden and offers strength if I choose to believe in Him.

Just a quick update.

IMG_0636.jpgI never take time to update when things are good.  Its not that I’m not grateful, its just that writing is how I process hard things.  When things are good, I don’t feel so inspired to take time to write it all out.  But, I know so many have partnered with us in prayer and I feel an update is in order.

The new jobs are so great.  Darren is home on the weekends.  Every.  Single. Weekend.  That alone has us over the moon.  The stability of a predictable and dependable pay check is pretty great too.  He is enjoying the work and the new friends he has made.  He has really been blessed with several strong Christian men on his crew that continuously build him up.  My job definitely has its crazy and unpredictable moments, but overall, the workload is light and we are figuring out how to maintain a normal life despite the unpredictability of being “on call”.  The financial security that these new jobs has offered is so incredibly freeing.  I was never discontent with our financial situation.  We have always had food to eat and a roof over our heads.  We have never gone without a necessity.  That being said, living in a constant state of not quite enough is stressful.  The last three months, there has been money left over after paying the bills.  No strategizing how we were going to make it stretch.  We aren’t wealthy by any means, but there is enough.  Enough is a very good feeling.

Enough has allowed us to afford some much needed things we had been putting off for months.  Its allowed us freedom to invest time in others by way of having them for a meal or taking them out for a meal.  Being able to take care of ourselves well, allows us to invest in other more fully.  Its so rewarding.

We have a plan to be debt free in a year.  That may be a lofty goal.  It may take us just a bit over a year as we needed a few months to get back on our feet, but we have a solid plan and its so exciting!  Just last month I paid off three medical bills we had been paying on for several years.  THREE!!  The debt snowball is rolling!!  We are working hard to find balance between allowing ourselves a little room to breathe, and building a financially secure state.

We are purging our belongings striving for a more minimalistic state of living.  Too much stuff leads to unnecessary stress.  Getting rid of the excess has been so freeing!  We hope to redecorate the house over time.  New pain, less clutter.  Ah…the thought of it just brings me so much calm.

Health wise, Levi and I are in a sort of holding pattern.  Due to our previous financial crunch, we put things on a bit of a hold.  Now that we again have health insurance, we have to get back to work.  I will be scheduling Levi’s urology appointment with Lurie’s.  For myself, I have chosen to delay further diagnostics to focus on self care.  Eating better, sleeping better, further reducing stress.  Eating has become really difficult.  Its not that I don’t want to eat, but I have no hunger (or thirst most of the time).   Eating causes nausea and an increased heart rate  which makes the passing out more likely.  The doctor thinks this may be due to some mineral deficiencies.  Ive lost quite a bit of weight so I’m really working hard to maintain and focus on eating well.  But at the same time, I don’t want diet to become a fixation.  Again balance isn’t easy.  Hopefully, some new supplements will fix me right up!  I’m getting very mixed advice from my local docs and having real trouble finding someone to step up and help me manage my care.  Its likely another trip to Cleveland will be in my future.  I’m just wanting to plan this trip well, making sure I see the right people and know what questions to ask.  Id also like to take Levi with me to see genetics to get the EDS3 diagnosis official for him.

Overall, we are just in a really good place.  There is so much excitement in starting new.  So much potential.  It feels like Darren and I are really starting to build the life WE want.  Filling it with things and people so intentionally.  We are discovering a sense of self and that’s empowering.  We hope that you will continue to pray Gods direction over our lives.  Specifically, it is our prayer that God will continue to provide us with ways to serve those around us and that we will be receptive to those opportunities.  We want to live intentionally in all things!

Lukie Turns One

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Tomorrow, my baby turns one.  I cant really wrap my head around that, because, it seems, that he was just born.  I know thats something everyone says, but its exceptionally true this time.   I feel like Im just coming out from under that new baby fog and now he’s so grown!

I love watching him grow.  Every day there is something new that we make him do over and over a hundred times, because we all just think this baby hung the moon.  But, with every new milestone met, there is a hint of sadness, knowing that its the last first, for this family.

I have 4 beautiful children.  They are my world.  Thats the problem.  I have no idea how to be without a baby on my hip.  For as long as I can remember, there was always a baby.  It started when my youngest brother was born.  I was 9, almost 10, and he was mine.  I know now, how crazy I drove my mother trying to be his mama, because I now have a little mama of my own.  As he grew, there were church kids and neighbor kids to fill my arms.  And then there was our Eva.  If I could go back in time, I would go back to when she was tiny and I would relive every one of those moments and commit them to memory much better than I managed to.  I would tell myself to go ahead and feel how good motherhood felt, even though it seemed my world was crashing around me.  My parents divorce, trying to figure out married life, trying to get careers started, buying and renovating a house.  We had so much on our plates.  By the time Levi came, we were established.  Motherhood seemed second nature.  Transition was easy.  But, as we dealt with his health issues, he developed a big resentment towards me.  “Mama makes hurts” he would say.  Now things with Emma were all around easy.  She was a delightful baby.  Always happy as long as she could cuddle.  Darren and I were both working and working too much.  Adjusting to three kids was intense.  By the time she was 4 months old, I knew I wanted to be home with her, with all of the kids.  I felt like, I got it right with her.  Things were so fluid.  I nursed her until she was almost 2.  We co-slept.  So in tune.  We were a unit.  And then back surgery and POTS threatened to take away my mobility.  I spend a good portion of her second year on the couch.

You could say, that there are things I wish I could change about each childs first year.  You cant go back in time, you can only move forward.

And then the miscarriages.  I knew that if there were another child, I knew, I wanted things to be so different.  I wanted life to be slower, more intentional.  I wanted to sink into the sweet newborn smell and really take it all in. I wanted to be so present in every moment.  Loss has a way of changing you completely so that you understand, so well, the things that actually matter.

When I found out I was pregnant with Lukas, I was so afraid.  I was afraid to get attached.  Afraid to plan.  Afraid to feel really.  I was in a sort of denial for most of the pregnancy.  I was just not sure my heart could handle losing him.  I wanted to embrace the pregnancy.  I wanted to  experience it all fully, but I just couldnt let myself.  I had hoped, through his birth, that I could find healing of sorts.  I wanted an all natural, empowering birth.  Nothing about it went as I had envisioned it.  That first look and first latch, I had dreampt of it for months.  I dreamed about how I would hold him and just love him so big because he was here.  Instead, I shook, too weak to hold him myself for some time.  Then there were after birth complications and pain.  And the babymoon I had dreamed of, coming home, well, that never happened either.  Instead, we were thrust into life as a family of 6, with a dad that wasnt present because when harvest comes, the farmer must go, ready or not.  None of it, none of it went like i had planned.

And through it I learned, that thats life.  I learned that being able to roll with the ups and downs of life was crucial to being able to actually enjoy it.  I realized that I had a choice to be miserable because nothing was going my way, or to make the best out of what I had. I had a perfect example of how to do that in my Lukas.  Ive never seen a baby as relaxed as he was.  Content to go here or there any time.  Content to be handled by this sibling and lugged around by that one. Content to just be held and be.

He and I, we quickly molded.  Our connection is strong.  Its so good.  He has healed my soul in ways I cant even put into words.  He has shown me, that I am enough.  Im not a perfect mother, but I am perfect for him.  To see those eyes look into mine, and feel his soft hands running up and down my arms while he nurses.  Its simply what feels like home.  Its not that I love him more than the other kids.  Of course I love them all so completely.  Its just that, I love him so much deeper than I knew how to love before.  Realizing that I couldnt take the gift of a child for granted, realizing that every pregnancy wasnt promised, realizing that my health wasnt guaranteed, all of these things have given me a new appreciation and understanding of just how precious his little life is.

I know, that Lukas will be the last child.  Its not what I want.  I want to continue living on this baby high.  I want to continue to have somewhere and someone else to put my focus on.  I want to continue to exist in this identity, the identity of a baby mom.  I have no idea how to function without a baby.  I want to continue to sit on this baby induced high.  I want another chance to perfect this thing called motherhood.  The days ahead are uncharted.  Its frightening.  Frightening, because I have no idea what Im doing.  Ive had 4 chances at being a baby mama, and I finally feel like I have it sort of figured out.

What it basically boils down to, is that im feeling like a child being pulled out a a candy store.  I know whats here is good.  I finally even know what candy I like best, and I dont want to leave!  But its time, its time to leave.  Change is frightening, because its unknown.  Its so easy to remain in your comfort zone, but remaining there, doesnt allow for growth.

So here is to the next stage.  The days of nursing and baby wearing and co sleeping and sloppy kisses and kissing boo boo’s, they arent gone, but they are numbered.  The days of being needed to tie shoes and button shirts are counted.  The last Ulrich is entering toddlerhood.  He’s growing up, whether his mama likes it or not.  And as he grows, Ill have to grow too and we will discover this new stage together.  ❤

Happy birthday, Lukas Abram Ulrich.  You complete us with your laid back personality and love to cuddle; with your ability to make us all laugh and your ornery attitude.  We love you so much!

Is God a liar?

Do you believe that God created the universe?

Well, yes, of course.

Do you believe that He created man?  Created you?

Yes.

Do you believe that God makes Mistakes?

No.  Thats what makes Him God, right?

So then, if you believe that God does not make mistakes and you believe that He created you, then you are not a mistake.

For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.  Psalm 130: 13-15

I know, I have a purpose…I know…but I dont feel like I am enough.  I feel inadequate.  I’m too fat, too ugly, to mediocre, too skinny…I dont like my eyes, my chin, my hips.  Im too shy, too awkward. There are things in my past Im not proud of….The arguments of inferiority are many, but the reasons all the same.  I feel inadequate.  Im just not enough.

Self esteem is something so many of us struggle with.  The feeling of being inadequate.  I know, for most of my life its been a very real struggle for me.  Ive felt like I wasnt smart enough, Ive felt like I wasnt physically desirable.  Ive wondered if I was nice enough, fun enough, exciting enough.  Adding true limitations from chronic illness and miscarriage to that already damaged self view and I was really struggling to love that face in the mirror.

Am I enough?  I didnt feel like I was enough.

But then, the above conversation happened with a friend.  He told me, to assume that I was inadequate, was to assume that God somehow made a mistake.  And if I believed that God made a mistake, well then, I dont believe that God is who he says He is at all.  If I believe that I am inadequate, then I believe that God is a fraud.

Those words hit me like a ton of bricks.  Believe God is a fraud?!  Absolutely Not!  That simple conversation changed my outlook and my heart.  I still have days and moments of self doubt.  But, I am able to quiet those feelings by finding peace in the promise that my God does not make mistakes.  I am enough in Christ.

Moses is a great example of how someone who was seemingly inadequate by man’s standards, is exceptionally equipped for the plan God had for him.  Moses, was an adopted prince, turned nomad murderer.  An outcast.  No one to claim him, but the beasts of the wilderness.  Moses mistakes allowed him to be in the exact position God needed him to be to do great things.  God told Moses, through the burning bush, that He needed him.

“But who am I, that I should go to Pharaoh and bring the Israelites out of Egypt?”

And God said: “I will be with you” 

God lays out His plan and commission for Moses.

Moses answered: “What if they do not believe me or listen to me?”

Then God proceeded to give Moses miraculous signs to prove He was in control, to prove He could be trusted.  God took the time to prove himself to Moses.  Lets not forget this entire conversation is occurring via a non burning, burning bush.  In my opinion God went above and beyond to prove his authority to Moses.  You wont believe Moses response:

“O, Lord, I have never been eloquent, neither in the past, nor since you have spoken to your servant.  I am slow of speech and tongue.”

If I were God, I would probably be getting a smidge annoyed by now, by Moses whining and lack of trust.

The Lord said to Moses: “Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the Lord?  Now go, I will help you.”

But Moses is acting very much like my three year old, and continues to protest.

And Moses said: “O, Lord, please send someone else”

And like most parents who have asked their kids umpteen times to do one simple thing, Gods anger burned against Moses.  Ill give the “catch up” version of Gods response.

“Look, Moses, Ive got this covered.  Your brother Aaron, who is a great speaker is on his way to meet you.  He’s going to talk for you. Ive given you the ability to preform miracles and some pretty specific instructions on how and when to use them.  Now get a move on it!”

And like most children, once they have pushed their parents to the brink of rage, Moses decides, very begrudgingly, to comply with Gods request.  But he continues doubt and question.  Moses repeatedly cries out to God about His plan to deliver Israel.  Time and time again, God reveals His plan to Moses.  Time and time again, God proves to Moses that He is in control and that His plan will prevail.  And we all know how the story ends.  God does deliver the people of Israel and He does it by using Moses, a guy with a stutter who had a history of being a murderer.  A guy who, lets face it, was previously failing at life. So, if God can use Moses to do big things,like deliver an entire nation from slavery, I think He can use just about anyone to do anything.

And then there is this, not only, does God not create mistakes, He also provided his perfect son, to die for us as a sacrifice, so that, when He looks at us, He doesnt see sinful and ugly  and self doubting people.  When He looks at His children, through Christ, He sees perfection and absolute beauty.  When you receive the gift of grace Christ offers, your sins are cast from you, your imperfections covered, fully and completely.

Repeat after me:

I AM ENOUGH IN CHRIST.

Say it again:

I AM ENOUGH IN CHRIST.

If you are like me, you may need to say it at least 300 times a day to remind yourself.  But its true.  Its always been true.  God does not make mistakes.  God can use any person, in any circumstance to do really big things.  Our feelings of inadequacy dont change the fact, that God is God.  We can choose to dwell on our imperfections, limitations and insecurities.  We can choose to continue to feel inadequate.  OR, we can choose to take peace in knowing that we are enough.  We are made perfect in all of our imperfections.  God doesnt care if you stutter, He doesnt care about past sins, He doesnt care about physical appearance.  What God cares about is having you near now and into eternity.  God loves you.  All of you.  We are enough in Christ.  Say it.  Claim it.  Find peace in it.

 

Thy Will

I’m so confused
I know I heard you loud and clear
So, I followed through
Somehow I ended up here
I don’t wanna think
I may never understand
That my broken heart is a part of your plan
When I try to pray
All I’ve got is hurt and these four words

Thy will be done

I know you’re good
But this don’t feel good right now
And I know you think
Of things I could never think about
It’s hard to count it all joy
Distracted by the noise
Just trying to make sense
Of all your promises
Sometimes I gotta stop
Remember that you’re God
And I am not
So

Thy will be done
Like a child on my knees all that comes to me is
Thy will be done

I know you see me
I know you hear me, Lord
Your plans are for me
Goodness you have in store
I know you hear me
I know you see me, Lord
Your plans are for me
Good news you have in store

So, thy will be done

Like a child on my knees all that comes to me is
Thy will be done

I know you see me
I know you hear me, Lord

Have you ever had a song that just pinged your soul? Stops you in your tracks, takes your breath away kind of moment?  Hillary Scott wrote it about a miscarriage she experienced.  Having experienced that myself, the first time I heard the song, I listened through sweet tears of agreement.  It sums up how I feel and felt so perfectly.  Ive enjoyed hearing it every time, like a new layer of healing is peeled away.

These last two years have been so intense.  Hard and beautiful and blessed and horrible all at once.  Its been so much to process and think through and attempt to understand and learn how to embrace.  Its been mountain tops of goodness and valleys of pain. There have been so many times where I have found myself on my knees giving back my desire for complete control to the Lord.  But, like any human, there are those corners of my heart that I dont give up so easily.

Since he first became sick at 12 months, Levi has been a very special burden.  I have known since that first fever, there was something just not quite normal about this child.  Doctors repeatedly tell us he is “fine”.  He is just a little outside of normal in many areas.  Ive always known they were missing something.  On the outside, he is a vibrant and healthy child.  He runs and plays in the mud like any other 5 year old boy.  On the outside, he looks fine.  But, if you know him well, you know there are many subtle things, like his inability to fight off a common childhood sickness without medical intervention,  or urinary incontinence, or the frequent unexplained ulcers on his face, that make him complicated.  Having the Ehlers Danlos diagnosis helps explain so much of these abnormalities, maybe even all of them.  But, without an Ehlers literate pediatric doctor, the detective work has been completely up to myself.  Always reading and researching and fighting to connect the dots.  Im exhausted.  Many days I feel like I cant take one more step on this journey.  We have made some huge strides in the last six months with diet and supplements and tongue tie revision.  Huge steps.  I rejoice in every win.  But still, there are big issues, like the incontinence, that simply cant be ignored any longer.

After seeing the new urologist last week, I was so excited to have a doctor that I feel will listen and fight with me.  Hallelujah!!!  But then, not having insurance for another month means waiting even longer for answers.  That means more medical bills on our already taxed budget.  Im afraid of what those answers may be.  There will very likely be some form of surgery, either to remove whatever is blocking the bladder from emptying or, on the spine or brain, if the problem is neurological, like we fear.  My heart breaks over needing to put my little Levi through anything else.  He’s done enough!  He’s been through enough!  I just cant.  Cant feel it, cant think about it.  Cant go on.  But, thats not an option is it?  I have to go on.  Go on pushing and fighting for answers and direction.  Go on driving to doctors here and there and running tests on this and that.  I have to push on until there are solid and clear answers.  I want to be able to hold my boy and not worry and fret and wonder.  I want to be able to rejoice in him playing and laughing and not wonder about what is going on in his body.    I need to allow myself to look past the problem, and see the boy.  Relinquishing that control completely, is a daily battle I fight with the Lord.  I want to hand him over and to understand that Levi is God’s son, not mine.  God has a plan for him.  He is not mine to control.  I try.  I speak the words and I try to own them.  I know the truth in my heart.  My human nature still fights for control, despite.

We were driving to Bloomington for what seems the 30th time in the last week, and I was thinking and mulling over everything as I drove. This song came on the radio.  At first I became teary eyed thinking about Hillary and her love for her unborn and understanding exactly how she felt.  And I listened, for probably the first time, to the words entirely. I was thinking to myself how well this could apply to other areas of my life.  My mind turned to Levi.  And then, from the back seat, I hear my Levi belting out the words with all of his might.  Singing, in that hoarse and raspy voice:

“Thy will be done.  They will be done.”

I had to pull the van over.  I sat there, on the side of the road, sobbing as he sang.  I cant tell you in words what happened exactly.  I felt a lightning bolt in my soul.  I couldnt breathe.  The tears flowed from a spot in my heart, so deep.  The Lord used that moment to break me.  Break me right in half.  Its as if this song is exactly my prayer for Levi and he used my sweet boy to answer me so clearly.  His plans are for him.  Goodness he has in store.  Ok Lord, I hear you.  Thy will, not mine.

I know you’re good
But this don’t feel good right now
And I know you think
Of things I could never think about
It’s hard to count it all joy
Distracted by the noise
Just trying to make sense
Of all your promises
Sometimes I gotta stop
Remember that you’re God
And I am not
So

Thy will be done
Like a child on my knees all that comes to me is
Thy will be done

I wish I had the satisfaction of knowing that there is a happily ever after coming.  I wish I knew that all will be resolved and well in just a short time.  I wish I knew that the resolution wasnt major surgery.  I dont know that.  All I know, is that I have to keep pressing forward and remembering that even though I cant understand why I, and Levi, need to be broken for the fulfillment of Gods perfect plan, His plan is bigger than I can see. His plan is good.  He loves Levi more than I can.  He loves him eternally.  No matter the outcome, it is good.  I choose to have faith  in that.

Thank you Lord, for using a simple song to speak to me so clearly.  I hear you.  Thy will be done.