Finding Rest

I kind of hate how this is such a dark and depressing place.  Im really not a depressed individual.  I quite love my life, despite its ups and downs.  But this blog is my space to reason and name the feelings I sometimes feel.  Its healing to me to write.  Its a space to admit my pain and put purpose to it.  To name it and claim it.  I suppose, I should make a point to write about some happy things at some point to balance it out, but the truth is, hard things are my inspiration to write.  In times of happiness, I just want to be present to enjoy it.

My heart has been very heavy this last month, for reasons I cant publicly discuss.  Not being able to discuss it, seems to make the burden 10 times heavier. But as always, in tough times, there is room for growth.

In discussing the problem with my husband last week, he said something that might as well be the theme of our marriage.  He stopped and said, “I love you.  I know, no matter what we go through, we can go through it together and that makes me love you.”  He’s right.  In the 8 years we have been married we have endured more than some do in a life time.  Its made our bond strong and deep and Im grateful for that.

Being married and being a mother has taught me so much about the character of God.  It was hard for me to understand unconditional love, until I had experienced the human equivalent.  In the past two years, it seems like my life is one big, dramatic trial after another.  Each time I think I may have overcome and life may resume to “normal” something else comes up.  Ive come to the conclusion that perhaps this idea of normalcy is just a myth and that life is truly just not as easy as I had expected.  I often wonder why God allows these trials to come.  I struggle with the idea of being “good enough” to pass whatever test this is so I can move on to easier times.  Thats not really how it works though, is it?  In fact the Bible tells us In Matthew 5 “Blessed are the persecuted because of righteousness, for theirs is the kingdom of heaven.”  We are told, that living a life honoring of Christ will not be easy.  We are also promised we will not have to carry the load alone.  Looking back, I can say with certainty, that I am thankful for the trials we have endured, because I understand, of God, exactly what my husband said to me.  Knowing that He walks with me, and seeing that evidence in my life, grows my love for Him.

Last night, my 7 year old was asking for help with a homework paper.  It was obvious that she didnt need help as much as she just wanted the answers so she could move on to the next activity.  I explained to her, that I needed to see her attempt the assignment on her own.  “Im here to assist you in working through it, but I wont give you the answers.  If I did, you wouldnt be learning the concept.”  While I would love to give my children anything and everything to make their lives easy, as a parent, I recognize that isnt loving.  Loving them, is requiring them to be responsible and allowing them the space to do things on their own, so that they are prepared for life to come.  I walk with them, but not for them.  Isnt our relationship with Christ the same?  I know, because He loves me, that He would like for me to live a life free of trials, but because that isnt reality, He instead teaches me to endure the trials and walks through them with me.  Its much easier to understand this, as I parent my own children and can understand that parental role.

I struggle often, both in my relationships with people and Christ, with being a people pleaser.  I often act as I think I am expected, instead of whats true in my heart.  Its been a process, in the last year and in the present to start to learn who I am and act as me, not what I think is expected of me.  This shows in my prayer life.  I often pray what I think God would want to hear from me, instead of whats on my heart.  Thats so silly, considering He already knows what Im thinking.  Im not sure who I think Im trying to fool.  The honest truth is, Im tired and weary.  This current issue is weighing me down.  And while I can give it over to the Lord and I can have faith for resolution and faith in His plan, Im tired, and I just dont feel like pressing on.  Im sure all the mothers reading can understand that.  We all have had those days. You love your babies so much and quitting isnt an option, but dang.  You are tired and you just dont want to pour the cheerios and do the laundry and cook the supper and go to the store and all the other big and small things mothers do.  Every step and motion is just an absolute test of your might.  Thats just how Im feeling about life in general at the moment.  Just plain ‘ol flat out weary.  Even the good things feel heavy because of the weariness.

A friend told me this morning that its ok to pray like Christ did in the garden.  “Father let this cup pass from me, but not my will, but yours.”  That struck me, as I reflected.  How weary was Christ in the garden?  How fearful?  How unsure?  He knew what he needed to do, but he didnt want to do it.  He was obedient, despite.  If Chist can admit to God how weary and unsure He was, then I can too.  God already knows what is on my heart and in order to have real intimacy with him, I need to be honest and open with myself and him.  I reflect back on so many of the bible “greats” and remember how many times they cried out with weary hearts.  There is great comfort in knowing that its ok to feel tired.  Its ok to admit that I am not strong on my own.  In fact, its good to admit it.  Its even necessary.

So my prayer today is exactly that.  Lord, if its your will, take this burden from me.  Im weary and tired and I need rest.  But Lord, I know your plan is bigger than me.  I know your plan is good.  I have faith in that.  So, thy will be done.  But Lord, if Im going to keep pressing on, I need some strength.  Like, a heap of it, because Im so tired.  In all things Lord, may my actions and words bring glory to your name, so that others may know you and your love.  Amen.

Psalm 18:6 But in my distress I cried out to the LORD; yes, I prayed to my God for help. He heard me from his sanctuary; my cry to him reached his ears.

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.

Two steps forward, three steps back

The stress lately…its eating me alive.  Being at work two days a week seems trivial, but when you have been home for the last year, its a difficult adjustment.  Going to work this time of year, makes it exceptionally hard.  The garden is overflowing and needs weeding and picking and the food I pick cant actually sit on the counter forever.  The corn needs to be picked and cleaned and put away for the year.  The applesauce to be made.  Then peaches and green beans.  The kids want to go to the pool and to the park and I need to catch up on adult things.  I want to spend every minute of the last of our summer soaking them up.  Finding balance is difficult.  Im so glad this is short term.

Monday, I was working hard to get caught up on all of the adult things I had been putting off, like paying bills and making phone calls.  It was about 11am and I was still in my nightgown.  The dog was being needy.  Whenever I dont feel well or he doesnt, he sits on my feet.  He attempts to have a seat even when Im trying to walk.  He had been doing this all morning.  I was feeling a bit under the weather so I figured that was the reason.  He kept going to the door and whining.  I thought he needed to go out.  I told Eva to open the door for him and let him out and I would get my shoes and go out with him.  As soon as she opened the door, he took off.  Down the street and into the corn field.  Gus is a runner.  He runs often and has a history of running far.  He always comes home.  It was hot, I knew he wouldnt be gone long.  I started walking down the road after him calling.  No sign of him.  I was in my jammies, so I decided to get dressed before looking further.  I noticed on my walk back that the cat was in the tree, where she often goes when scared, but didnt think much of it at the time.  I went in the house, threw on some clothes and got in the van and drove to the neighbors looking for the dog.  Again, no sign of him.  I couldnt really leave the kids alone, so I drove back down the road and parked the van, knowing he would come back eventually.  By the time I was in the door, he was back.  We opened the front door to let him in and I heard Eva gasp.  “He’s bleeding!!”  Now, Eva has a long history of being ridiculously dramatic.  I was expecting a small scratch.  My jaw hit the floor when I saw gaping holes.

I brought him in and put him in the tub to rinse him off.  The bleeding basically stopped.  I saw at least three puncture wounds and they were deep.  I knew the fact that they werent bleeding was not a good thing.  I called my brother in law and asked him to come over to help with the kids so I could better assess the damage.  Gus started hyperventilating.  The more I tried to rinse and see where he was hurt, the more worked up he got.  I knew if i persisted he was going to pass out.  I decided to take him to the vet.  I knew he was hurt worse than I could see, when he couldnt jump into the van to leave.  He loves van rides.  Normally, as soon as I get to Bloomington city limits, he is going nuts.  Whining and barking and trying to see.  This time, silence.  I kept talking to the back of the van wondering if he was still alive.  I was so relieved when we got to the vet that he lifted his head to greet me.  But no barking, no vigorous pulling or frantic sniffing.  he just laid there limp in my arms.  I knew it was bad.  The vet whisked him away immediately and told me to go home, he would call when he could sedate him and assess the full damage.

At 5pm, we went back to pick him up.   Now, I love Gus, he was my first pet and has always been my baby, but Im not one to get overly sensitive about pets.  He’s “just a dog” but when they brought him out to me on that stretcher and I saw how hurt he really was, I turned to a ball of blubbering mush.  Three bites, six areas of wounds, each area with several open puncture wounds.  Most of his coat was shaved to reveal over 40 staples, 6 drains, too many stitches to count.  He literally was lucky to be alive.

As I recounted the happenings of the day, I started putting pieces together.  Last week something tried to get a chicken.  Chicken made it, but she’s mostly naked.  Feathers all over the yard.  The cat has been very edgy and skittish the last few days.  Gus hasnt run away in months.  That day, he gave no regard to my calls and took off with intention.  He knew something was out there and he went after it.  He was sitting on my feet to protect me!  Cue the guilt.  I had been so mad at him for running and interrupting my day.  I didnt really need him, my little 30 lb puggle, to take on the coyote hidden in the corn, but he did.  Dogs can really teach us big lessons.  No matter how I ignore him or get frustrated with him, he is loyal to a fault.  So many big lessons there.  He’s just a dumb dog, but he loves me and us, despite anything.  So much so, that he will stupidly try to pick a fight he wont win.

Bringing puppy home was an ordeal.  The kids were so upset by looking at his wounds.  He was still very groggy from anesthesia and nippy and growly.  I discussed with the kids that the meds may make him very grumpy and to just let him be this evening.  When we got home, he was all nuzzled under the back seat of the van.  I couldnt wake him enough to get him out.  So, we sat in the van with him for 30 minutes waiting for Darren to get home.  He couldnt come at him from behind because he would bite and there was no great way to grab him without causing pain.  He couldnt get to him from the front without taking out all 4 car seats and moving the seats all over the van.  What an ordeal!  We carried him in the house and put him in his bed in the kitchen.  He laid there limp and groggy all night.  The next morning, I had to go to work, so left the kids and the dog with my grandma.  I had no idea how ruffled the kids were by the  whole ordeal until I got home.  Grandma said the kids were afraid of Gus being anywhere near them.  Afraid to get bit.  Afraid to hurt him.  Afraid of him in his cone.  Afraid he would get blood on them.  She pretty much held the kids all day.  Poor Grandma.  Im sure she was more than ready to go home!

Things have calmed down a bit now, except with Emma.  Poor girl is simply terrified of everything now.  Every noise and shadow has her on high alert.  Gus went back tot he vet since he hasnt eaten since Monday.  We had to be gone several hours today, so thought it best to leave him in the care of the vet so he could get his pain medicine on time and they could monitor his need for hydration.  Tomorrow he will go back to surgery to remove the drain and close those holes.  Im so happy for this.  The purpose of the drains is to keep the wound bleeding and healing appropriately.  But keeping the dog off of my carpet isnt an easy feat!

In the midst of all of this, we learned that due to Darren’s job change, our medical insurance ran out.  We had been attempting to sort this all out since he quit his job, but have been getting the run around.  We have the option of COBRA, but its very very expensive.  Levi was supposed to see urology at Lurie’s Childrens Hospital today.  We have waited months to get a referral and an appointment.  So we went and we paid for the visit out of pocket…all $320 of it.  OUCH.  But it was worth it.

The doctor took a very good history of the incontinence issues that have been developing over the last two years.  He was very concerned at the lack of work up our previous urologist did.  He was concerned specifically that he had been potty trained and has lost ability over time.  He noted some abnormalities on the VCUG from 4 years ago that the previous uro had thought was not significant.  He disagrees, and actually feels its a very significant finding and likely related to the Ehlers Danlos diagnosis.  We know, based on his physical exam and the “pee log” we kept over the last week, that he isnt emptying his bladder.  So, the objective is to determine if this is because something is blocking the urine from leaving the bladder or if there is a neurological issue.  It seems most prudent to move from a least invasive procedure to most invasive if needed.  So he ordered some simple non invasive tests to rule out obstruction.  But, here we are without insurance.  UGH.  So, do we purchase COBRA and do the tests now, with our previous policy where the deductible is met, or do we wait until September when the new insurance with the high deductible starts.  Either scenario leaves us with a huge out of pocket expense.  I also havent done the stress test or brain MRI I need.  So, the total cost is something to consider.

Just this morning, I was working on writing us a new budget, now that Darren and I have started our new jobs.  I had a plan to have us debt free in a year.  Key point there is HAD.  The amount of money we have paid out in medical bills in the last 5 years is astronomical.  Im very thankful for insurance.  Very.  But, I wish it truly made medical care affordable.  So, in the last week, my dog has had very expensive emergency surgery.  We have self paid a specialist and the eye doctor for three of us.  I paid off one medical bill and im fixing to acquire several more.   Im trying not to complain and be thankful that we do have access to care and well paying jobs.  I fully understand these are “first world” problems.  I know there are many, many with more financial barriers than what we have.  But, Im frustrated.  I want to get answers for Levi and for myself.  I want to get past all of this.  I want to be able to move on.  I want to find financial stability.  Seems you can have one or the other.  Answers or income.  Not both.

Sometimes you just have days when the weight of the world gets heavy and you just need to vent.  I need a minute to breathe and regroup and refocus and those moments are few and far between in a mom’s world.  Hence, why Im typing this at 1am instead of sleeping.  I know all of this will work out in time.  I know me worrying wont help a bit of it.  I know.  I know. Being patient has never been something I was good at.  I suppose God will keep giving me opportunities until I figure it out.

Isaiah 40:31 But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

 

To the working and pumping mom, I salute you!

I made it through the first two days.  **giant sigh of relief**

Monday, I was up at 4:30am.  I do much better with a 4:30am bedtime instead of wake time.  Ive grown a whole new respect for my husband who does this every day.  Mornings are not for the weak.  I probably sounds ridiculous, its not the first time I have ever gotten up early, but its the first time Ive done it since the POTS became so severe.  I was really worried that I wouldnt be able to do it.  The showering and rushing.  Showering is the hardest thing most POTsies do.  But I did it.  And by nothing short of answered prayers and the grace of God, I managed to keep my heart rate under 150 and did not pass out!  Other than being long and painstakingly boring, Monday was uneventful.  Lukas took less milk than he probably should have, but he took the bottle and also ate some food!!  He really hasnt shown much interest in solids at all up tot his point, so I was excited to hear this.  I was so worried he wouldnt take the bottle well, since He’s never really used one.  I came home, helped cook dinner, worked in the garden, made birthday brownies and celebrated my big boys birthday, put the kids to bed, did my other motherly duties and crashed.  HARD.

Tuesday morning was a bit rougher.  Thankfully, I didnt have to get up quite so early.  Lukas woke when I got up, so I had to get ready with a baby in tow.  You know you are winning mother-ship when you can nurse and blow dry your hair at the same time. Or put on mascara with a grabby 9 month old on your hip.  As soon as Lukas saw grandma come in the house, he knew mom was leaving and he started screaming.  Screaming like I have never heard him scream before.  I grabbed my stuff and ran out the door as fast as I could before he got too upset.  I could still hear him screaming, from outside, as I got in the car to leave.  I realized, later that morning when I went to pump, that in my haste I had only grabbed my pump, but no parts.  Cool.

So, Its my first day at a brand new department.  I have no pump.  Im wearing an unlined, underwire bra.  All I can say is THANK JESUS, I had a jacket to cover up my unfortunate lumpy and  drippy chest.  I spent my entire day silently praying that no babies would cry within a 5 mile radius of me. I knew the waterworks would certainly ensue.  I made it though the day, uncomfortable, but dicreet…at least I hope no one realized how ridiculously tight my shirt was when I left…until I came home and saw my baby and immediately leaked about 100 ounces all over everything and everyone.   I spent last night with my baby and my heat pack fighting off a clogged duct.  Why do I even own an underwire bra?!  Cursed thing.

Im sure about half the people reading this are wondering why in the world I would share these details with anyone.  Welp, this is real life.  This is what its like to be a working, pumping mother.  A mother does not stop being mom just because she leaves her children in someone else’s care.  She just adds another hat onto her already full hat rack.  Ive been a working mom and Ive been a stay at home mom, and both are very differently so hard and both definitely have their own set of perks. But perhaps, the most challenging of both, for me, has been being a working and pumping mom.

In theory, working and pumping is no big deal.  Every few hours, you sneak away for a quiet 15 minutes alone, pump a little while you peruse Facebook and then carry on with your day.  Some days, its exactly like that.  But many days, Its worrying when you can take a break, trying to type over your flanges while you pump, coming back to 15 voicemails that accumulated while you were away.  Its forgetting pump parts at home and dealing with leaks and clogs.  Its forgetting that the dress you wore today offers no access except to take it off, so you sit in that freezing office in just your underpants, hoping and praying no one walks in.  Its worrying you wont make enough or scrambling to find something to store the milk in when you pump too much.  Its scheduling and planning every pump and feed to maintain that perfect balance between your baby needs and your body’s needs and your jobs needs.

Im no stranger to pumping at work.  Ive done it through three kids already.  One might say Im an old pro!  But, truth is, even though Im experienced, its still hard.  When I get home after a long day, I dont want to wash bottles and pump parts.  I dont want to take inventory to make sure all I need is in the bag.  I dont want to get up 30 minutes early to get in a pump before I leave.  I get tired of counting ounces in the freezer and calculating how much milk baby needs for the day.  Im lucky that all of my kids have adjusted flawlessly from breast to bottle.  Many moms dont have that luxury and deal with bottle preference and nursing aversions.  Truth is, pumping goes smoothly for me compared to so many.  Im able to pump enough, Im able to feed without difficulty when I get home.  I know so many work so hard and struggle so hard to make sure their babies are nourished while they are away.

This is all short term for me.  In a few short weeks, Ill pack that darn pump up once again, hopeful to never see it again!  But, to all of you long term working and pumping moms, I salute you!  I want you to know that your sacrifice is amazing!  Juggling babys needs, your own and your jobs needs deserves promotion to super hero status.  I resonate with you, in the dog days of pumping, when you are sitting naked in the office, cold and teary eyed because you are missing your sweet little ones first coos or first steps.  Ive felt that feeling of accomplishment when you pump six extra ounces for the day and Ive felt that feeling of panic when you come up six ounces short.  When your co workers snarl at you because you get six “leisurely”  breaks a day, you smile back with pride, knowing you are doing what is best for your baby.  When your boss asks for the 100th time if you are close to weaning, I hope you feel strong and empowered to tell him just how it will be.  When you are walking around work with that wet stain on your chest, or spill spot on your pants, I salute you.  Every pumping mom takes that walk of shame at some point.  When you spend your entire lunch break pumping only to spill it, my heart goes out to you.  When you forget your pump bag in the car Friday night and find a whole days work spoiled on Monday, I cry with you.  I rejoice with you, at the end of the day, coming home and throwing that soggy, milk stained bra on the floor.  There truly is no better feeling!!

No matter what your pumping journey looks like, you, my fellow pumping mama, are awesome.  Whether its half and ounce or twenty ounces, you made that for your baby and that is an accomplishment.  Here is my salute to you.  May your pumping days be productive, your milk never spilled, your pump bag fully stocked and your shirt always dry!  Pump on, my fellow milk making, working mama’s!

 

All The Feels

All the feels are getting to me today.  This has been a big month.  Im on overload.

Darren started his new job and its been great.  But its also required quite a bit of change here at home for things to run as smoothly as possible.  Being responsible for cooking dinner while managing 4 littles is a tad chaotic….ok, its borderline insanity.  Eva turned 7.  Seven!!!  How in the world is she 7?!  She is basically grown.  I kid, but really, she is so self sufficient.  She really is a tiny grown up in so many ways.  Levi is turning 5.  He’s no longer a toddler.  He is a little man.  He is testing those independence waters a little more every day.  I love to watch him.  I worried a long time he would never be independent.  But there he goes!  Lukas turned 9 months.  On my 29th birthday.  Very close to when our first angel baby would have been celebrating their first birthday.  For some reason, this all just felt so significant and beautiful and somber.  Lukie has healed my heart in ways I dont even have words to begin to explain.

Tomorrow I start my new job.  Getting through this hiring process has been a bit of a disorganized nightmare.  Very disorganized.  I had to call them, twice, to find out if I was even hired.  I accepted the job before I knew how much it paid, because no one seemed to have that information.  Then, I have had to make several calls to get requirements for orientation nailed down.  Finally, last Friday, I called again.  I was told to be at hospital orientation on Monday and to come Tuesday to the home health office for unit orientation.  They were to call me if there was any additional time needed.  Ok,cool.  Two days.  Two days away from the kids.  I can do that.  I started pumping ferociously to stock up enough milk for Lukas while Im away.  Any other time, that wouldnt be such a huge deal, but he’s been sick, and therefore, nursing constantly.  So sneaking in a productive pump has been a delicate balancing act.  I worked for months to decrease my supply to a manageable level.  Pumping now, and risking a possible increase seems like a scary prospect.  Monday night I get a call from the manager.  They are now requesting that I come to the Home Health office in Peoria 5 days a week from 8am to 430pm for a month.  EVERY DAY FOR A MONTH!!!  Uh…nope.  Cue full on anxiety attack.  No childcare, no milk, not ready, ahhhhhh!!!  So, once I regained composure, I called them back and advised them, that because I was not made aware of this requirement until 7 days before hand, even though I accepted the job in May, I would not be able to accommodate that.  Thankfully, they understood and we compromised on two days a week for a month.  Whew.

So, that should be all fine and dandy.  But, its not.  Emotionally, needing to be away two days a week is taking its toll.  Thats two days a week of my summer with Eva Im going to miss out on.  Thats two days a week that Im going to need to be away from Lukas.  It sounds so trivial when I type it out, but for reasons I cant fully explain, my heart feels its anything but trivial.  Lukas is my last baby.  I have been so blessed to be able to be the constant in his life.  our days arent rushed.  There is no required schedule.  Its just us, fluidly doing life as a connected pair.  This is a luxury I didnt have with the other kids.  I wasnt emotionally prepared to have to sacrifice a second of us.  You get to be “us” with your baby for such a very short time.  In the grand scheme of things its no big deal.  It truly isnt.  Thats eight days.  Eight days I get to go and do grown up things while my babies are cared for by loving family members.  Its all going to be fine; probably good for all of us.  But at the same time, its just not fine.  I wish I would have known in May.  I would have had time to adjust to the idea.  But who am I kidding, it probably wouldnt have made a difference.

Monday is also Levi’s 5th birthday.  I promised myself I wasnt going to miss any more birthdays.  I hate that I cant be with him on his birthday.  He wont care, he will be with grandma and she will make him pancakes and all will be well in his world.  Pancakes and grandma are two of his favorite things.  But, my heart is breaking over it.  *I* want to make him pancakes.  I want to celebrate his day with him.  I want to bear hug him when he wakes up and sing happy birthday. Me.  The whole purpose of a work at home job is to not have to miss out.  I promised myself I wouldn’t miss any more birthdays.

The kids are anxious.  They hate the idea of me going back to work.  They dont understand that this wont require me to leave them after this month.  All they know is they want me here.  I never thought working weekends was an issue for them.  I was here all week and they had daddy all weekend.  But, when I told Eva I took another job, before I could even explain what that entailed, she was in tears.  “I dont want you to have to work, Mama.  I want you home.  Please dont go.”  The little ones act like once I leave, Im never coming back.  All the memories of all the mornings I peeled clingy babies off to go to work against my will come flooding back.  I promised myself those days were over.  Knowing Lukas has been sick makes leaving even harder.

I realize that you cant just start a job.  There has to be some training.  I knew there would be some time away needed.  My brain gets it.  Its my heart that cant get with the program.  I realize that this job is going to be a tremendous help to my husband and our family.  I know this is a necessary step to a better future.  I know.  Im glad to do it.  Im even excited to do it.  I miss being a nurse terribly.  But, at the same time, Im selfishly grieving going back to work.  Even if the going is only for a very, very short time.  After this month, Ill be working from home and I will be here…and probably wishing I could go in the office for some peace and quiet!

Change is hard.  Even when change is good and necessary.

We are going to celebrate Levi’s birthday today.  Lukie is doing quite a bit better with the breathing treatments.  I have pumped enough milk to cover these first two days.  Its all going to be ok.  But I still may shed a few tears between now and tomorrow night.  I just love my babies so much it hurts sometimes.

Isnt motherhood the most conflicting state?  You beg and beg for a second to yourself and then when the times comes, you grieve the second lost.  Its no wonder we moms are half nuts.  Our hearts and our brains have no idea how to communicate!

So if you think of me tomorrow…blubbering in a pumping room missing my babies…say a quick prayer for me to get my act together!

Coffee with a side of grace

Its 6am and I finally got everyone asleep….from last night!  Its nights like this that leave me to question our decision to have 4 kids 6 and under.  “Who’s idea was this?!” I half jokingly ask my husband. Of course, he responds with “Im pretty sure it was yours” as he yawns and starts the coffee pot.  This stage of life is hard.  Its teething and diapers and dinner struggles and not being able to go more than two minutes without someone needing me.  Its physically and mentally and emotionally exhausting.  So much work and so little immediate reward.

No one slept last night.  The three year old had an ear ache and was in our room every half hour or so.  The baby had a stuffy, snotty nose and cried most of the night because he couldnt suck his fingers – his usual way to self soothe.  One child wet the bed.  One child woke us up to let us know it was still dark out; wondering if it was the middle of the night, or if the sun forgot to come up.  At one point, my husband took Emma back to her bed and never came back to our room.  I figured he went to the couch to catch some sleep since he had to be up early for work.  But, when his alarm went off at 430am, I went to find him, and there he was, asleep, while still sitting on the side of Emma’s bed.  You know you are exhausted when you can sleep sitting up!

Its 6am and I already have over 1000 steps in according to my fitbit.  I must have walked a mile or more pacing the bedroom floor bouncing the baby.  My app says I slept one hour and 15 minutes.  Im tired.  So. Dog. Tired.  The kids will be up in an hour.  They will want breakfast.  I promised them I would make banana muffins last night.  There will be pee sheets to launder.  The garden needs my attention before the rain comes.  The sink is full of dishes.  There are bills that need to be paid and appointments that need to be made.  The diaper count is getting low, which means a trip to town is in order.  Which means lugging 4 kids through Target.  The baby will decide that he needs to nurse as soon as we get in the checkout line.  Emma will need to pee, as soon as I start putting items on the belt, even though she declined the need right before we got in line.  We will check out and go potty and feed the baby and right when I have all of the groceries loaded and everyone buckled in their car seats, Levi will need to poop. Then, we will need lunch out, because they will starve to death if they dont get fed right at noon.  Its a variation of the same, every time we leave the house.  They are good kids,  actually very well behaved, but there are 4 of them and one of me. Being in public is just exhausting.  And if the thunder comes, like the weatherman says it will, I can guarantee, my afternoon will be spent telling 4 kids over and over that they are safe and they dont have to be afraid; Ill tell them over and over and over while they all crowd in my lap.  Dinner will be late because they wont let me out of their sight to go and cook it.  Just thinking about it all makes me even more tired.

They tell me Im going to miss this.  Deep down, I know they are right.  But, in this moment, I cant help but dream of the day when I can make that Target run, alone, latte in hand, with no time constraints. Right now, I dream of uninterrupted sleep and conversation.  Right now, I just want to shower without someone barging in demanding a sandwich.  I want to be able to leave home and not worry about if the baby has enough milk.  I want to eat a meal without having to stop to wipe someones rear.  I’d like to remember, what its like to sleep next to my husband.  This day will come, some day I wont be so needed.

Its 7 am and I hear pitter patter feet coming down the stairs.  I sigh, because its time.  That sigh is tired and ragged, but when I see that messy haired, finger sucking, blankie holding little turd…that same little turkey that had me up half the night, I smile.  I love her; so much its hurts me.  I love this time in my life.  Its hard.  Its so stinking hard.  But, Its also the most fulfilling and blessed and full of joy.  I swoop her up in my arms and take a long, deep smell of her hair.  I think to myself ‘I wish these days would never end”.  Isnt motherhood the most confused state?  The same mom that was just yearning for quiet days to come, in now relishing in the very thing she wants to escape from.

Today, I will need a whole lot of coffee and Jesus to make it through.  Im going to admit that Im tired and give myself some grace.  Im thinking an afternoon full of too much TV and chicken nuggets for dinner.  Im going to allow myself not to get caught up in the guilt of not savoring every single moment.  Thats not realistic.  Some days, motherhood is just plain hard.  Its ok to admit that.  Some days, the best thing I can do, for my family, is admit that Im only human and take a break.  So here’s to coffee, grace, blanket forts, too many movies and finger foods for dinner in the living room…and hopefully an early bed time for all.

 

 

 

 

 

 

Good news just keeps rolling in!!

Just a quick update for the family and friends that have been waiting!

Darren started his new job and seems to really be enjoying it.  Knowing he will be home at a consistent time each night has just been such a weight lifted!  We have had him home for two full weekends now and its just wonderful to have time to just be a family and recharge before the next week.  I officially start my new job on July 18th.

The one “downside” Darren’s new job is that we have to change our health insurance.  Our deductible through the previous insurance was paid, and the new deductible is quite a bit larger than we had previously, so Im trying to cram everything I can, into the next 60 days so we can take advantage of our previously paid plan.  When I left Cleveland, I had several tests that I still needed to do, that I couldnt get scheduled in time there.  Including a stress test for my heart, due to abnormal EKG’s and a brain MRI to rule out Chiari and follow up on some lesions that were present on CT several years ago.  So, we are working to get those scheduled, as well as getting some of the screening tests done for the kids.  Everyone needs to see the eye doctor as the eyes are often effected in EDS.

As many of you know, Levi has had some ongoing issues with urinary incontinence that we have had little help with getting resolved despite seeing the local urologists at Childrens Hospital.  We have started seeing a new primary doctor who is more familiar with our Ehlers diagnosis and is also very motivated to help me get direction in Levi’s care.  I really appreciate this doctor because he likes to try more natural and alternative cares, when appropriate, but also knows when mainstream medical intervention is needed.  He had asked us to follow a strict diet and bowel protocol with Levi for one month and then to see him again to discuss if that helped his wetting, and if not, what the next step would be.  The urologist in Peoria have been treating the issue like constipation for two years because Levi had one abdominal xray that showed constipation.  The new doctor and I disagree that this is the issue, but wanted to try the diet and bowel protocol to at least entertain the idea before referring to another urologist.  While the diet helped immensely in other areas, it had no effect on the wetting.  So, the doctor is referring us to urology at Lurie’s for a second opinion.  I spoke with the nurse from Lurie’s on the phone this morning and already made more progress then I have in three years with the Peoria doctors.  So, Im very hopeful this will help get some long time questions answered.  The incontinence is really starting to effect Levi’s self esteem and is manifesting as increased social anxiety.

There are two conditions that are common in Ehlers Danlos.  Chiari Malformation of the brain and tethered spinal cord.  Both of these can be serious and both require surgical intervention.  There is question if Levi’s wetting, GI and sleep issues could be related to one of these.  However, in order to rule those out, he would need to be sedated for an MRI of both the brain and the lumbar/sacral area.  This would be several hours under sedation.  So, we are trying to rule out some more common issues with urology before we jump to possibly unnecessary testing.  The sleep and breathing issues have improved since his tongue tie was revised, but not completely.  He still snores loudly and wakes often and is very hard to wake during certain parts of his sleep cycle.  Another consideration is if he may just need his tonsils removed.  We are trying a specific type of muscle therapy to change his oral posture and some homeopathy for two months and then we will again see ENT to re-evaluate.  Chiari can cause apnea as well, so again, we are trying to determine what specifically we are dealing with.  His tonsils dont look too bad but he has had strep three times in the last year.  So tonsils alone, may not explain the apneas, but they cant easily be ruled out, either.  Levi has made some huge improvements overall, in the past few months, so things may be less serious than we first thought.  But we also dont want to miss any warning signs as both of these conditions are not well known and can be tricky in presentation.  We are sort of at this point where we didnt foresee so much great improvement with just simple diet changes, and we are so pleased…but still observing to see if things continue to improve or if there is more to consider.  We are either dealing with several simple issues or one or two really big ones.  We are on the right track, but it will be a few months before we truly have any clarity.

The doctor also ordered echocardiograms for all of the kids, as mitral valve regurgitation is common in EDS.  We need a baseline to screen for issues now and to compare to in the future.  We will be starting physical therapy for Lukas because of his hip issues and for Emma for her frequent falls and low muscle tone.  Overall, I am very pleased with the care from the new doctor.  I hope once we get the baseline screening done, we can all take a deep breath and put so many questions and concerns to rest.  Im hopeful with some initial direction, that I can manage a lot more at home and we can decrease the need for so many appointments and doctors.

So here is the big news.  There are several types of EDS.  We have been diagnosed with type 3, or hypermobility.  However, we have many vascular symptoms, so we had some genetic testing done to rule out vascular EDS.  This type is often deadly.  When I left genetics he was uncertain if there was truly a genetic component or just some crossover symptoms.  We have been waiting two months to hear.  The testing came back today and we do not have vascular EDS!  Whew.  Big sigh of relief.  So, while we still have to take precautions for bleeding, and will continue with some screening tests every few years, our risk for spontaneous artery rupture and other scary complications, is much less.

My month is getting crazy, fast, with all of these appointments, but Im very excited for direction and having a plan.  The more I can do for these kiddos while they are young, the less all of this will effect them as adults.

Thank you for all of the continued prayers!  We will keep everyone updated as we can.