Baby Steps

Since my last post I have made steady progress in many ways.  But it has definitely been baby steps.

There have been other times that I have headed in the wrong direction, and came back and got on track.  But in the past the road back to living with having my priorities straight was not a long road.  Things seemed to fall back into place quite easily.  Not this time.

It's almost like waking up from a long, bad dream this time.  Where did that year go?  It was almost exactly a year from Matthew's trisomy 18 diagnosis when Jessica was 20 weeks along (which marks the beginning of my falling away), until I wrote my last blog post.  Almost a year of struggling to make it through each day.  Days and weeks of being in bed most of the time, followed by weeks and months or struggling through days and nights of physical pain.

So, spiritually, I turned the corner at the beginning of May.  But, physically, I was still dealing with chronic back pain and the lovely friends that came along with that - fatigue, lethargy, psychological and mental changes, difficulty sleeping.  That meant that I just couldn't flip a switch and suddenly be everything I needed/wanted to be!

My first baby steps were to think through my priorities.  Number one was re-connecting with God.  That meant having my quiet time every morning.  That is easier said than done when you have nine children still living at home.  Waking up at a decent hour requires that I get a decent amount of sleep.  That is something that is often out of my control!  With Christy's needs for tube feeding and oxygen at night, getting her to bed take 30 minutes even with help.  And then there is my four year old who seemed to think that crawling into bed with mommy during the night was hunky dory, and I was usually too tired to fight it.  But, I needed to still make meeting with God in my quiet place the number one priority of each day.  So I did...I refused to leave my bedroom until I had done this, even if it meant not leaving my bedroom until 10 am....or even noon!

My number two priority had to become me.  I couldn't be the wife and mother I needed to be if I was unwell.  So, for me, that meant that I needed to make sure that I took my supplements/prescriptions every morning and every night, as well as my ointments, creams and magnesium spray.  The second part of that was doing my physical therapy - but this proved to be the hardest to control!  It is so stinking hard to make yourself to any form of exercise when it took all your energy just to get out of bed, have my quiet time and take my pills!  Over the past three months I have had more days where I give up and walk out my bedroom door without doing my exercises than the days when I conquered that mountain.  But, overall, I was doing it far more often than I had in months!  The last part of taking care of myself was to eat right.  I had gone sugar and gluten free after I had gotten the diagnosis of arthritis, and I needed to stick to that!  Also, in June I started Whole 30 to further reduce inflammation...more on that in a later post, maybe!

Some days, that was it...that was all I could do.  Some days, I would go back to bed.   But they were getting fewer and farther between as the days/weeks went by.

About two weeks after my spiritual reawakening, I knew I was in over my head.  I was overwhelmed every day by all that came screaming to my attention the moment I left my bedroom.  Nearly a year of pain and struggle means nearly a year of just surviving...I mean barely surviving.  Anything beyond ensuring that my children were fed and dressed were beyond my ability to handle.  And even those things were usually delegated, but they remained my responsibility.  And, if you are a mother, you know that delegating something doesn't always means it's easier...sometimes it's easier to just do it myself...if I was capable to do it, which in more and more ways I just couldn't do it - I got to where I was told I was not to lift Christy...and something like changing her diaper could even bring about hours of back pain!

It didn't take long before I knew I was literally in over my head.  My heart and my mind screamed to run and hide.  So many areas of my home were in disarray.  So many things were being left undone, or only partially done.  Yes, I have older children living at home, but they had so many ways that they were having to step in and do the work that I should be doing.  Changing diapers on three girls (yes, potty training Carese has not been something I have been able to do until just this summer, and even now it's only part time - she is resistant to this for some reason!), making meals for 11 people every day, creating Christy's special meals three times and day and feeding her, doing the grocery shopping, doing the laundry.  For so long I was literally unable to do any housework at all!  One time I tried washing dishes....ended up with serious debilitating pain for two days....yeah, not worth it!  Speaking of dishes...washing dishes in our home is a full time job, which had to be done by one of the older children as well.

So there I was, with a mental list a mile long of all the things that needed to be tended to around our home, and little ones who were quite literally screaming for my attention (they miss having a mom that can actually get out of bed!).  And then there is the behavior that inevitably rears it's ugly head when mom hasn't been present to work on the hearts and minds of her children - selfishness, laziness, fault finding...the list goes on.  Some days I would come out of my bedroom and have what I like to call "fires to put out" - you know, conflicts between children or outright sinful behavior, or the more subtle ones where they try to make you think they have done what they should have, when they really haven't.  I tell you - it was enough to make me want to run and hide (notice a theme here???).

Well, running away was just not an option.  Over the years I've heard of the occasional mother of many who just up and leaves her family.  I tell you, I now understand.  I do not condone, but I understand.  But, I knew that God had personally called me to be the mother of these children, and the wife to my husband.  I knew I couldn't quit. But I also knew I was just not up to facing this on my own.

So, I reach out for help.

I called my pastor and said I needed help.  Specifically, I needed counseling.  I was floundering.  I had thoughts that I needed help conquering.  He found another mom in our church who was qualified and trained in lay counseling.  I seemed preposterous to even need it, but need it I did.  I needed someone to look in from the outside and help me to figure out what I needed to focus on, and what I needed to ignore.

She gave me permission to have the priorities that I had put in place - God first, my health next, and then my family/home.  That was such a huge relief!  I could count any day a success if I kept those priorities straight, even if that day meant my only contribution outside of my bedroom was successfully making it to my recliner and to be present to "put out fires."

I met with her once a week at first.  In person a few times, but then it was easier (and better for my family) to connect over the phone.  Now it's about every other week or so, unless something comes up that I need help to figure out.  But that lifeline has been such a HUGE part of my progess!  If anyone reading my blog post takes away one thing, it is this....if you are overwhelmed, get help!!  Do not stick it out, listening to your heart tell you lies like, "you can't do this," "it's not worth it."  Get help.  Call you pastor, call up a Christian Counselor and find someone qualified to talk to.

One of the biggest ways that talking to her helped is that I was finally able to talk about some of the things that had been so devastating to me.  Things about the day of Matthew's birth(death), things about my friend, Dian, who had committed suicide (she lost the battle against undiagnosed health issues and severe sleep deprivation...two things I could relate to).  Being able to voice my thoughts where I wouldn't bring more pain to those I love was so good for me!  And she gave me permission to be sad.  That grief was a normal process.  After that, most days, thinking of Matthew or Diane was much easier...still hard and it still hurt, but it no longer tore at my soul.

I found that when I couldn't go on, I couldn't tell those close to me.  Admitting even having those thoughts was admitting failure.  Just putting my thoughts into words was so incredibly hard.  But once I did, and she helped me to fight those thoughts with the truth of scripture, they lost their power.

My thoughts of "I can't do this" became "I can do all things through CHRIST who strengthens me."

My thoughts of "No one cares about me" became "Just as a father has compassion on his children, So the LORD has compassion on those who fear Him. For He Himself knows our frame; He is mindful that we are but dust."

My thoughts of "It's not worth it" became "Indeed, I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord. For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ"

 (yes, those are suicidal thoughts...there, I said it...I would never take my life, but my deceitful heart has been whispering these awful things to me in my darkest moments, even since my spiritual reawakening - if you have thoughts like this, you need to reach out and get help NOW!)

I needed to battle my own thoughts with the truth of scripture.  I started a thoughts diary, as a journal of scripture I can use to battle my thoughts.  I was able to see improvements.  Over time I would be able to recognize these thoughts as lies, and counter then with scripture and prayer sooner.

OH - don't let me overlook that one.  I needed to redevelop the habit of going straight to the Throne of my Savior when those thoughts came crashing it.  I've heard the phrase "crying out to God" and that the Holy Spirit interprets our groanings....but until this year, I did not truly get it.  Now I do.  I can not count the times that I have literally cried out to God in my misery.  Tears flowing, sobs wracking....crying out for strength to make it.  Physical pain, when chronic, changes you.  I can have great days, even great weeks now, and then wham, something happens and I am wracked with pain and just as fast, I am right back to depressed and freaked out.  This happened three times this week!  I can even have a great day, but then be dealing with sudden pain at night and I am thrown into that terrible place of lies and thoughts of depression.  But, now, I (usually) turn to God and cry out for help.  And He gives it...not that my pain suddenly goes away, but my thoughts are turned to Him, and I can not have thoughts born from lies in my mind while crying out to God.  I have a choice in those moments...to have faith or to fear.  Fear breeds anxiety and terror.  Faith brings peace.

So, where am I today?  I am down from 6 prescriptions to only two, which I only take occasionally (a muscle relaxant and Tylenol 3).  My blood pressure is down from averaging 150/90 to averaging 125/65!  I have lost 30 pounds since February.  I have more good days than bad.  I actually wake up before my alarm most mornings, which is set at 7:30 now.  I don't take naps, at least it is rare.  I have been the one to get Christy dressed and in her braces everyday this week!  I have been the one to put her to bed more nights than not this week.  I am continuing to research the things I deal with, like chronic pain, daily headaches...and am finding new things to try out.

One of which is CBD oil, which is made from commercially produced hemp, which is legal in all 50 states.  It has been the most effective form of continued pain relief for me.  Two dropper-fuls, twice a day, and a topical massage oil applied to my problem area, and most days I have no back pain, unless I do something to aggravate it.  But even then, it no longer ramps up into hours and days of pain.  If stop doing whatever it is that I'm doing that I shouldn't do, ice my back, apply heat and rest, my back calms down in just a matter or an hour or two, maybe even less!  If you have chronic pain or illness, I highly recommend that you research this and maybe give it a try!  You can even order right on Amazon!

The other things I do to help with my back problems is weekly acupuncture, every other week medical massage and chiropractic care.  Over the summer I was doing those things twice as often, but that meant I was away from home two afternoons a week.  As I improved I was able to spread it out so that I'm only away one day a week!

Over the last two months I was suffering from terrible pressure headaches every day.  While a caffeine pill would take care of it, it became obvious that it was not normal.  I did some research and found some things, but the best thing I did was to go get my blood tested after consulting with my doctor.  I found out , ferritin levels were seriously low, which also explained a few other things I had developed....so I started taking desiccated liver capsules.  I share that to say, don't let something like that just go on, week after week!  Get in to see you doctor and get some tests done.  I don't always do what my doctor advises, but it is so helpful to know what is wrong so I can work to correct it!

But I saved the best thing for the last!!!

On August 15, Asa Robert Langford made his grand entrance!  I was able to be there, manning the camera and watching the indescribable joy as he was born and took his first breath.  Today they call a baby born after a pregnancy or infant loss a "Rainbow Baby."  So Asa is a Rainbow Baby (Click to see professional photos from his birth).  Until you have lost a baby, you never fully grasp the incredible gift that life is.  I have also had the privilege to be able to help Jessica care for him (he's asleep in my arms right now!!).  He is so precious.  Such a rich blessing from our Heavenly Father.

I hope what I have shared has helped someone.  It is such a struggle.  Chronic pain/illness is something you just can't understand until you experience it.  I hope that in the future I will be compassionate to those I meet who are dealing with such difficult trials.  But I have also learned that people who deal with this, are more likely to not go out...I have only gone to church a handful of times this year.  So, please, take a minute to think of someone in your life that you have lost touch with because they have fallen to a chronic health problem.  Give them a call, ask them how you can help.  Did you know that the population of people who deal with chronic pain or illness have a super high suicide rate?  I can tell you first hand, that even just asking "how can I pray for you" will mean the world to them!  Just let them know you care!!!  I can count on one hand the number of people in my life who have actually asked me that question.  I had no idea....

But let me end on this note.  I now have hope.  I have fought many battles this year, and some I have lost, but most of those were before I came running back to God.  As long as I keep holding tight to His loving hand, I know that I will keep winning the battles.  I may still have those very dark difficult moments in the middle of the night, but I know that if I keep taking control of my thoughts in His power, I will continue to have victory and be able to bring glory to God in my life.

2 Cor 10:5 - We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ.

Phil 4:8 - Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 

And, just to make you smile...I got these amazing photos, while he was awake, when he was just 10 days old!