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!

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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.

The Stigma

 

I was 19, I woke up in my dorm room with an excruciating pain in my head.  Dizzy, nauseated, unable to stand or talk.  Literally crippled in every way except to feel the enormous weight of the pain.  My room mate had been out all night and was in a dead sleep, there was no way I was going to wake her for help.  Eventually, I was able to roll out of bed on to the floor and crawl down the hall to the bathroom to throw up.

Thats where my journey started.  A journey I have been on for the last ten years.

After that day, I began to struggle with crippling migraines.  I passed out frequently.  My gastrointestinal system was my worst enemy.  Muscle pain and spasm.  I saw my primary doctor and a neurologist, who agreed, it was “just anxiety”.

“So often we see YOUNG WOMEN who come into our office and they complain about this or that and they think they are ill, but really, they are JUST ANXIOUS and its all psychosomatic”.

They told me I was crazy.  They found a passive aggressive way to label a young female.  I was victim to the stigma.

Please understand, that it is not my intention to down play the diagnosis of anxiety or depression.  Those are very real diagnosis with very real, often debilitating, implications.  There are also diagnostic criteria that one must meet, to be diagnosed with such a disorder.  Diagnostic criteria that few doctors take the time to actually investigate.  My intention here, to share my story, and to address, specifically, the stigma that surrounds women’s healthcare and the idea that women are often labeled inappropriately as “just anxious” which results in the refusal to investigate medical causes, despite an obvious need.  Many doctors also refuse to investigate a possible medical cause for the depression and anxiety.  Its thought, that true depression in a chemical imbalance in the brain.  But there are many medical conditions that can cause psychiatric symptoms or mimic the symptoms of anxiety or depression.  Many of those conditions are also very common in young women.  For example, thyroid disorders, anemia, chronic yeast infections, Vitamin D deficiency or other essential trace nutrient deficiencies, tachycardia and palpitations, irritable bowel syndrome, chronic fatigue, fibromyalgia, lupus, hormonal imbalance and more.

The idea of quieting the female’s needs for healthcare is not new.  For centuries and centuries, men have viewed the female body as unclean, possessed or sickly.  Even outside of healthcare, women have been viewed as the lesser species whose needs have been left invalidated.  The female race has made huge strides in the last few decades towards equality, but healthcare is one prime example of how the gender gap is still immense.  This article from The Atlantic discusses this very issue as it regards to pain presentation.

“Women are likely to be treated less aggressively until they prove that they are as sick as male patients.”  The Atlantic reports.  This has certainly proven true for myself.

For ten years, I pushed.  I saw my internal medicine doctor over 30 times with the same set of complaints.  Chest pain, rapid heart beat, syncope, debilitating abdominal pain, shortness of breath, dizziness and fatigue.  I was in the emergency room for syncope 5 times in the course of a year.   For abdominal pain with near syncope 4 times.  I saw the nurse practitioner 5 times.  I saw the neurologist every three months for two years.  Every visit, anti anxiety medications like xanax or SSRI’s were offered.  In 2006, while in nursing school, the syncope began happening daily.  During my 5 ER visits, no labs other than a basic blood count were done.  My diagnosis leaving the ER was syncope due to anxiety and pre-menstral syndrome.  While seeing my primary doctor for follow up, I begged him to look deeper.  I gave him a list of labs I had found in my text books and asked him to order them.  He knew they wouldnt show anything, but he obliged.  He was wrong.  My blood counts were very low.  I began seeing a hematologist for weekly iron infusions.  I felt validated.  I knew I wasnt “crazy”, as had been insinuated for so long.  But as we searched for a cause for the low iron and none was found, I knew this was only part of the puzzle as well.  While the iron decreased the syncope, other symptoms began to develop.  the tachycardia became more severe, my muscles began to cramp and pull.  I started having degeneration in my spine.  In fact, so severe, that I had to have emergency decompression surgery.  Emergency because, I was not taken seriously in the earlier 3 ER visits that week.  I was called a “drug seeker” and sent away by my colleges.  It took calling in a personal favor to a surgeon friend to get an MRI, which showed the nerve compression so severe, they werent sure if I would walk again.  I was crippled by fatigue and shortness of breath.  Many obvious and serious medical, tangible issues and yet, the only diagnosis in my chart was anxiety.  “Just try some prozac” my doctor would say.  I refused.  I wanted to get off the couch, but I wasnt able.  This was not a case of the blues.  This was physical.  In 2015, I sought out a new OB/GYNE due to an insurance change as I was newly pregnant.  Unfortunately, the first time I met that doctor was in OR while having a D&C because I had miscarried.  A few days after the D&C I started hemorrhaging at home.  It was very a difficult and long process to get the bleeding stopped.  I saw this new doctor in the office three times.  He was concerned, but perplexed.  The miscarriages and bleeding along with the other symptoms, had him thinking there was an underlying cause.  In two months I was pregnant again.  I lost this baby as well.  While he held my hand, he explained to me, that these things often happen for a reason.  He took a very detailed health history, he drew blood.  The blood work showed an MTHFR mutation.  This gene mutation is very common among the general population, and for many may be insignificant, but for me, it was another piece to my puzzle.  A red herring, if you will.  In two more months, I was pregnant again.  Thankfully, this pregnancy was successful and we now have our sweet Lukie Boy, as we call him, but it wasnt without complication.  The tachycardia again became more severe, the shortness of breath was so severe I was on the couch most of the time.  The syncope was multiple times a day.  My doctor looked at me and said, “Ive been studying.  I think its POTS”.  We talked about how I have had these symptoms for years.  We discussed how this is likely what I have had all along.  The doctor validated that POTS is often misdiagnosed as anxiety.  he explained how many doctors are uneducated on POTS and how many patients search years for answers.  He explained how the majority of POTS patients are female and how there is a real stigma against females when they use key words like “chest pain” and “fast heart” and have syncope.  He explained to me, exactly what I already knew.  I had a medical condition that had never been investigated because I was young and female.

The doctor ordered and echocardiogram, and holter monitor and lab work, all of which came back significantly abnormal.  He sent me to a cardiologist.  “the best of the best”, he told me.  The cardiologist acknowledged the POTS, but refused to do any work up.  Again I pushed.  I self referred to Cleveland clinic where I was diagnosed with Ehlers Danlos Syndrome and POTS.  The doctors there did a tilt table test, which shows my heart doesnt get the oxygen it needs.  They confirmed, two very complicated MEDICAL diagnosis for all of my symptoms. The doctors there explained to me that POTS is often misdiagnosed as anxiety. The following exerpt is taken from Dysautonomia International:

“Some of the physical symptoms of POTS overlap with the symptoms of anxiety, such as tachycardia and palpitations, POTS is not caused by anxiety. POTS patients are often misdiagnosed as having anxiety or panic disorder, but their symptoms are real and can severely limit a person’s ability to function.1,3 Research has shown that POTS patients are similarly or even less likely to suffer from anxiety or panic disorder than the general public.3,5,6,7 Research surveys that evaluate mental health show similar results between POTS patients and national norms.20″

As I begin to revisit my doctors here, the reception has been mixed.  Some are apologetic.  In awe that I have managed to function so well, despite.  They are eager to learn more and develop their understanding.  Some are less than empathetic and want to know how I managed to coerce the doctors there out of a diagnosis.  Not surprisingly, those doctors are the same ones who refuse to even look up my conditions and educate themselves.  Those doctors cant see past the normal labs and “insignificant” test results.  Those doctors refuse to take the time to put many seemingly insignificant pieces together, to make sense of a very significant whole picture.  Those doctors cant see past the stigma.  They cant understand that my complaints are hidden due to years of compensation.  They arent open to hearing the concerns and looking past the young female shell in front of them.  They can see the concerns in their two minute, hands off, exam, so it must be psychosomatic.

I have learned, in my time as an RN and probably more significantly, a patient, that doctors are human.  Many assume the letters behind their names means they are an authority in all things medical.  Anyone can earn letters behind their name with enough determination.  The letters themselves, hold little significance if one cannot see past their own hubris.  Please understand that I am not a “doctor hater”.  Quite the contrary.  I rely on doctors for care and direction.  But I also do not have false misconceptions about titles.  As with most things, you have to shop around for a medical doctor, just like you would a new car.  Each one will have positives and negatives.  Each one will have specialties and areas of lacking knowledge.  Each one will focus on what they know.  They are human.  What makes a good doctor, is one who is willing to listen to their patients concerns and validate what they are saying.  A good doctor is open to learning what the patient suggests.  I find it baffling to think anyone could navigate the health system without a medical degree.  If a patient does not know what to question and when, they dont know when there may be a deeper concern to discuss.  The system is quite broken.  A patient must advocate for themselves.  Research.  Seek many opinions.  Trust your gut.  You know your body better than anyone.

What I do know, is that the stigma exists.  The stigma keeps young women, especially, from getting proper medical care.  My story, is mine, but it is one of many.  Many women fighting to be heard over the noise of the stigma.

 

The Rainbow

Genesis 9:13  God said, “This is the sign of the covenant which I am making between Me and you and every living creature that is with you, for all successive generations; 13I set My bow in the cloud, and it shall be for a sign of a covenant between Me and the earth. 14“It shall come about, when I bring a cloud over the earth, that the bow will be seen in the cloud,…

 

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Tomorrow Lukas turns six months old.  Its also the anniversary of the due date for our first angel baby; what would have been Baby’s first birthday.  All of the emotions are flooding my heart.

I never talked about the miscarriages with the kids.  They really had no idea anything was wrong, either time.  I just never knew what to say or how to say it.  As time has passed, we have had brief conversations, here and there, about our babies in heaven, but I always brushed past the topic quickly.  Its hard to explain to a child.  Its hard to explain to myself.

I have been feeling, for some time, that I wanted to do something special to mark this day.  To remember the babies we lost and celebrate the baby we have.  I thought about of all sorts of ideas and spent time searching pinterest.  I never came across the thing that felt right.  Then Emma asked me to color with her.  A rainbow we decided.

So we drug out the big white paper and the crayons.  They helped me get the right colors, in the right order.  And then the moment just seemed right.  “do you all know what tomorrow is?” I asked them.  “Lukie’s 1/2 birthday!” They shouted back with excitement.  “Did you know its also the birthday of our baby in heaven?”  Eva said she had forgotten we had babies in heaven.  So, we spent some time talking about how I had started growing two babies, but something didnt go quite right and they were never born, but instead, live in heaven.  We talked about how Lukas is our “rainbow baby”.  A baby born after loss.  As we talked, each child helped me color on our rainbow.  In that moment, my heart just felt so full.  It as if they said, “we are your hope and promise.”

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With each new color added to our rainbow, I felt a growing peace.  Closure.

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“What do you think our babies are doing in Heaven mom?”

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“Does God have lunch in heaven? Cuz, I really like lunch”

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“Do you think our babies like it there?”

We talked about streets of gold.  We talked about how our babies will never hurt or be sad.  We talked about how our babies are never cold or hungry.  We talked about how our babies are loved.  We decided heaven sounds like a nice place to go.  I told them how much I love each one of them.  I love each one of them with every corner of my heart.  I told them, that even though I am sad that I never had a chance to meet the babies we lost, that I love them.  But I also know, that if we had them, we wouldnt have our Lukie.  We talked about rainbows and how God promised to take care of his people.  We talked about how rainbows remind us of hope.  As we finished coloring, I looked at that imperfect, lopsided rainbow and cried.  Its beautiful!  I look at it and I know, God’s promise is good.

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Sometimes, God uses the simplest things, like coloring a rainbow with your kids, to remind you, that He does have a plan.  That plan will be beautiful and glorious, but you may not see it until after the storm.  When we were finished, we decided that this rainbow was very special.  Eva thought we should have a picture with it, to celebrate Lukie’s birthday tomorrow.  They helped me tape it up, crooked, of course, and pictures were taken.

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I gave the kids two onsies to hold to represent our babies in heaven.  Its just a paper rainbow and a picture, but when I look at it, my heart bursts.

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Lukas Abram, you are so loved.  You are a perfect fit for this family.  I have no doubts when I hold you, you are the perfect embodiment of that perfect plan.

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Happy 1/2 baby boy!

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