Failure, Wisdom, Revelation and Motivation

This past week has been eye-opening for me in many ways so here goes the short of it (ha, y’all know that isn’t true as I can’t keep anything short).

I was going to blog last week about a 21 day challenge I was starting.  I actually wrote the blog post but got so busy with life I never took time to proofread it or publish it; but here I am now admitting failure and renewed motivation because of it.

I learned several things over the past week.  The first lesson is if you only weigh 115 pounds and have had severe hypoglycemia your whole life doing a detox, no sugar, no carb, all clean eating challenge might not be the best thing for you.  Now before anyone “attacks” me for trying to lose weight, that is NOT why I did it.  Do I have a few pounds I could shed, sure, but I did it as a detox, a restart if you will.  Thinking, if I could rid my body of the toxins and junk then perhaps I would feel better physically and mentally.  I hear once you get through a detox and rid your body of all the junk we don’t need that your brain fog will be gone, you will have more energy, won’t be so tired, etc.  So, Dennis and I decided to try it.  He is still doing great on it and I am so proud of him.  Me, not so much.  I got SUPER sick.  I went to bed Monday night not feeling well at all.  I woke up MANY times throughout the night feeling worse each time.  At 6am I got out of bed thinking I was perhaps dehydrated and tried walking into the kitchen to get some water, but I never made it.  The next thing I knew I was on the bedroom floor.  I reached for my cell phone on the chest in our room and texted Dennis “HELP.”  Dennis was in the shower and about 10 minutes later got my text.  He got me back in bed as I was so weak, nauseated, shaking and dizzy and I knew I needed sugar (which I wasn’t allowed to have).  But, I knew I couldn’t do this so I asked him to bring me some Gatorade.  I drank it, fell back asleep and woke up still weak and not feeling well but I was better than I had been all night.  Yesterday I realized that doing a complete cleanse/detox diet was not for me.  I so admire the people who can do it, but my body can’t handle it.  Perhaps if I could have pushed through then my body would balance out the sugar issue, I am not sure but I wouldn’t have been able to function like that and I have to be 100% to take care of Hannah.

That failure though led to the wisdom of me knowing that I couldn’t do the diet to that extreme but it also led me to some revelations of what I could do.  Small changes in my diet and life that would help me feel better.  Things not only to change in my diet, but also in my mind, heart and spirit.  One thing I promised myself when I started this 21-day challenge, along with the eating, I was not going to sit down and waste time scrolling around on Facebook and that part of the challenge I have kept. I have missed keeping up with my friends and family but I have had so much more time to focus on other things.  I also promised myself to spend more time in God’s word and in prayer and that too has improved my attitude and spirit.  Exercising more was another thing I had promised myself I would do but due to my feeling so bad I haven’t done that yet but I am going to.  As far as my diet is concerned, I have always eaten “healthy” but there are some changes I could make like avoiding the simple carbs (crackers and chips are my downfall) and avoiding dairy……cheese and sour cream is a weakness.  So I am still keeping those things out of my diet and I think that will help me tremendously.  I am cooking for Dennis on this diet and will be eating the same foods, just making sure I add a few complex carbohydrates along the way and perhaps a piece of bread or two!  Fortunately, I am not a sugary-sweet eater.  The only dessert that is tempting to me is cheesecake and fortunately I don’t keep that just lying around in the house (although my sweet neighbor has brought me a couple of pieces from Cheesecake Factory that I enjoyed immensely).

My motivation is better.  I have a more clear direction on what I want my life to be and look like.  I have been encouraged by several people to follow a dream of mine and I am finally motivated to try.  I haven’t been motivated in 4 years and now is the time.  Caring for Hannah truly takes so much out of me but I have to do this or one day I will regret it forever.  So, I am going to learn how to balance more and prioritize my life better all while eating well and exercising.  The motivation to do all of that is finally here and I refuse to waste it.

I saw this and it is so true. If there are changed you want or need to make in your life, the only person who can make that happen is you (and the Lord if you let Him).

I haven’t told many people this but when we were in NYC and Ainsely from Fox News signed Hannah’s book I handed her a letter I had written.  I never dreamed she would actually read it but she did and found me on Facebook last Wednesday and sent me a message.  She said something in that message that resonated with  me.  Part of her message to me said:  Life throws us some curve balls, but God gives us the abilities to miraculously catch them all and be grateful for the lessons we learn.  Isn’t that the truth?  I know we have all had curve balls thrown at us but what we do with those curve balls is what truly matters.  I have not always done the right thing with those curve balls.  I haven’t always rolled with them, trusted God with them wholeheartedly or been grateful for the many lessons God is trying to teach me.  But I want to do better with that.  I want to take each and every good and bad thing in my life, trust God with those times, learn from them and be better because of it.

The past week has been full of learning from recent and past failures, gaining wisdom and insight, having revelations and “aha” moments and finding the strength and motivation that I have been missing for SO long.  Thankful for a 21 day challenge that I failed…….because that failure opened my eyes to so much more!

I have spent too much time fearing failure and allowing it to keep me from things that I know God has called me to do…….

Until next time…….

 

 

 

Advertisements

Loosing Yourself and Finding Yourself…..FIGHT HARD

Something happens when you have a child…..you kind-of lose a little of yourself.  You have to let go of certain things because you have this new, tiny, helpless person that needs you and relies on you 100% of the time.  In the case of special needs mama’s like me, that part of yourself you lose when you have your child sometimes you might never get it back.  If you do, it is because you figure out some kind of balance between caregiving for your special needs child and figuring out how to care for yourself too.   I struggle with that so often.  I miss the part of me that I lost, but trying to incorporate that part of me into my life today is extremely challenging and at times seems impossible.

I miss my independence and freedom as I have mentioned many times before but I also miss the accomplishments, tenacious spirit and fighting for something and seeing it come to fruition.  I miss working, trying to solve problems and then the satisfaction of being part of the solution.  I miss helping people and I miss earning a paycheck.  So frustrating when you want to do something for your husband and you have to use money that he earned!  Not that he minds because when I quit work it was with the understanding that what he earns is mine as well, but it makes you more cautious on how you spend money and what you spend it on.

I have really struggled lately with numerous things.  I feel useless a lot.  I feel unaccomplished.  I feel like I don’t matter.  I feel unappreciated.  I feel overly tired and exhausted.  I feel that everything I do or say somehow gets messed up and misconstrued.  Let’s just face it, I have been in a major FUNK!  I have been such a “Miss grouchy britches”…….I call Hannah that a lot and I have been right there with her as of late.  Hers can be chalked up to PANDAS and/or hormones and well……mine can only be chalked up to discontentment and an overall feeling of exhaustion mentally, emotionally, physically and spiritually.

I will blog later in the week about something I have decided to do to help myself feel better from the inside out.  I will probably blog about that on Friday or Saturday.  Today though I realized that I had also just lost my fight.  I didn’t care anymore.  I was tired of fighting, pressing on, advocating and letting my voice be heard.  I was just plain weary and something happened today that gave me my fight back.  It is too much to blog about right now and at this time I am still awaiting an outcome of the issue at hand but I found my fight and voice again today and it gave me a feeling of belonging…..a feeling that I do matter and a desire to pick myself up, put myself back together for Hannah and Dennis’ sakes; not to mention my own self-worth and the need to press on.

The thought even crossed my mind today as I walked out of City Hall…..”geez, I sure miss working here.”  There was a feeling of nostalgia and accomplishment and I realized I still do have it in me to face the big dogs head on and not back down.  I might not win every battle but by golly it won’t stop me from fighting and I needed to remind myself today that I may be little but I am strong.  God has given me a little girl who needs me to fight for her yesterday, today and tomorrow.  I will have to fight for her in every aspect of her life and giving up has never been nor will it ever be an option.  As long as I have breath in my lungs I will fight.  Today, I fought and it felt good……almost powerful to know that no matter the outcome my voice and my heart was heard.  I needed that today as it makes me want to do better.  We have an uphill climb with several issues facing us for Hannah but I am gearing up and ready to tackle those issues head on.  Win or lose; at least I can say I tried.

Until next time……..

 

Part Four…..How You Can Help A Caregiver

This is my final post in this series and this one is a tough one to write.  Even as a caregiver I am often-times unsure about what I need.  I know what I want, but those things are sometimes unattainable.

As I said in one of my earlier posts; sometimes saying nothing at all is better than saying the wrong thing but at the same time you don’t want to appear uncaring and most people want to support and encourage someone they know and love so here are a few of my recommendations on how you can help a caregiver.

  1. Drop a card in the mail.  There is something so special about receiving “snail mail” for encouragement rather than a private FB message, text or email.  It is more tangible and it is truly a lost art.
  2. Drop a gift card in the mail to the grocery store, a gas station or a restaurant.  I have even received in the past a gift card to get a manicure or pedicure.  Any type of gift card is a huge blessing.  Sometimes the greatest thing I have in my wallet is a gift card to Chick-fil-a because it is a quick, easy lunch or dinner when I am too exhausted or busy to cook.  These are especially great for doctor appointment days when being on the road and waiting for appointments for hours keeps me from cooking my family a good dinner.
  3. Offer to bring a meal.  This is probably one of the easiest things anyone can do.  Look at it this way (this is the way I look at it when I am taking a meal to someone in need).  You are most likely going to be cooking at some point for your family.  Just double the recipe for  someone else.  Whenever we take a meal to a friend in need we just cook them the same thing we are eating; just make more.  That way, you “kill 2 birds with 1 stone.”  Double check to make sure there are no food allergies.  Another thing that makes a great meal are casseroles.  I will make 4 casseroles, keep one for myself, give one away and put 2 in the freezer for later.  Not really difficult at all.
  4. Pick up the phone and call.  Don’t use the excuse “I don’t call because I am just not sure if you are busy.”  The fact is, if the caregiver is busy, they won’t answer the phone but getting that voicemail will be welcomed.  There is so much about a caregivers life that is lonely.  Hearing another voice and being able to just talk for a few minutes and “vent” is such a stress reliever.  Having adult conversation is the greatest thing for someone who never gets it.  I am one of those people who loves conversation but I don’t want to talk about my problems or Hannah when I get the chance to talk.  I want to talk about anything and everything that my life doesn’t consist of .  Keep that in mind if you call a caregiver.  Ask how they are, if there is anything you can do and see where the conversation goes.  It might, like me, go to everything BUT who they are caregiving for and what is going on in their life!
  5. Be concerned and willing to help, but don’t be nosey or pushy.  If someone says no to an offer, accept that and know they have a reason for it.  Don’t press.
  6. Respite care……this one is tough as I am not going to let just anyone care for Hannah.  There is a learning curve to know how to care for her and I would venture to say that is a fact in most cases.  But, you can offer.  Offer to come sit with the person being cared for even for the caregiver to just go outside and sit with a cup of coffee or iced tea and get away from it all for a few minutes.  Offer to babysit or “adult” sit whatever the case may be.  The caregiver might say no but they might surprise you and say yes too. Be interested in learning how to caregive for the particular person/situation as I can guarantee you that all cases are different.  If you offer and the answer is no, don’t be offended.  The offer means more than you will ever know.  Just knowing someone else cares is huge.
  7. One of the things that I wished for early on in this was that someone would bring “the church” to me.  I don’t mean necessarily a sermon or a pastor but fellowship, Bible Study, encouragement.  Being homebound wears you down.  No fellowship, socialization or spiritual growth is really hard especially if you have been used to that all your life.  I was raised going to church…..I went to church up until Hannah was born.  In fact, she was born on a Wednesday but I was at church the Sunday prior.  After Hannah got here, I couldn’t go and there were only a handful of times we were really able to take her as a baby/toddler.  It wasn’t until she was 5 years old that we went every Sunday morning but that only lasted about 4-6 months.  So, I have really gone nearly 13 years with that part of my life being non-existent.  That was really hard for me at first.  I am over this and would most likely not accept someone bringing church to me on Sunday’s now (chalk it up to my habits/routines as Sunday is my house cleaning day as it keeps  my mind from going places it shouldn’t.  Sunday is my least favorite day of the week and yes perhaps there could still be some residual resentment)…..keeping it real here.  But, how hard is it to call someone up on a Saturday evening and say…..”hey my hubby is taking the kids to church but I thought I would go grab some donuts, you put on some coffee and we can chat and have a little Bible study tomorrow!”  I mean, had that been done for me early on it would have meant the world to me.  Even 4 years ago, it still would have.  This would be huge for someone who is totally homebound with a sick loved one.
  8. ENCOURAGE……LOVE……CARE…….BE KIND and NOT judgmental!  Remember my last posts on things not to say or do.
  9. Think about what you would want someone to do for you if you were homebound and caring for a loved one.  I promise you that if you try to put yourself in the caregivers shoes you might come up with an idea that would be a blessing to them but also to you!

My heart is with all caregivers.  I know several personally.  I know people who are caring for their child, parent, spouse, sibling and friends.  I even know someone who is caring for their ex-husband…..now if that isn’t love/compassion I don’t know what is!  The point is…..I know this life and I grieve it daily.  Not a day goes by that I don’t wish to live again and wish for Hannah to live outside this house.  It hurts….physically, emotionally, mentally and spiritually I truly ache.  But, those who have come alongside of me, those who have encouraged me and those who pray faithfully for me have helped sustain me on the REALLY hard days.  I have also had those walk away and that is not a bad thing.  If you can’t handle being a friend to the caregiver; if you can’t be loving, encouraging and kind….if being judgmental is the only thing you can do then walk away from them as you will be doing you both a huge favor.  Yes, I speak from experience and I still experience it today but it is okay and I am better off for it!

I hope to one day make this a mission of mine…..a retreat for the caregiver, gift bags for the caregiver, respite for the caregiver…..most importantly to be a friend to the caregiver!

Until next time…………

 

Fear and Disappointment

I interrupt the Caregiver Series of Blogs to write what is on my heart today.

I am so disappointed.  I was supposed to do the Special Needs Torch Run today that the Jacksonville Sheriff’s Office does each year.  My mom was coming over to babysit Hannah so I could go and get out to enjoy something I really like to do…..bringing awareness to something I am passionate about (the Special Needs Community), socialize and get some exercise doing it.  My mom texted this morning and had a sore throat; afraid she was coming down with something.  Of course I am thankful she told me and we cancelled as keeping Hannah well is my #1 priority but it was so disappointing for me not to get to go.

What was even more disappointing though was my fear which led to more disappointment.  The thought actually crossed my mind……why can’t I just get Hannah ready, load her wagon in the Expedition, drive downtown and push her in the wagon?  I could have it all if I could just bring myself to trust that she might be okay…..BUT FEAR!  Fear of “what if she gets exposed to some germ and gets sick.”  The stop you dead in your tracks kind of fear.  The fear that keeps me from doing ANYTHING with her.  The fear that freaking rules my life.  The fear I cannot shake.  The fear that I live my life around.  That disappointed in myself for feeling this way kind of fear.  Paralyzing fear that consumes me every.single.day.of.my.life!  I am controlled by it.  I am admitting it.  I cannot shake it and I am so very disappointed in myself for feeling like this and having this intense amount of fear.

I am thankful that my mom was concerned enough to cancel with me.  I truly don’t want to take chances with Hannah if someone is sick and I hope my mom gets feeling better really soon.  So, my mom canceling was not the disappointing part because I am thankful for that.  Disappointed that I couldn’t go, was part of it but more disappointing are my feelings and the fear I am consumed by.  It has taken me a long time to get to the point of really admitting that most of my actions are controlled by my own fear.  Now, let me say this……if and when Hannah gets sick…..it is nothing short of awful.  It takes her forever to kick anything (I mean we just got over a head/chest cold that took forever to kick) and while she is sick her PANDAS symptoms flare and life is SUPER hard.  So, I know I have justification for keeping her in this bubble that we have had to create.  But……my fear…..that is what keeps me from EVER coming outside of this bubble.  I hate this about me.  I hate that I have had to create this for so many years and my fear, anxiety and germpahobeness (is that even a word) is so bad that I can’t see past it.  Now, on the flip side…..gettting Hannah to want to go would be a feat in itself.  She doesn’t want to even go outside our house,  much less in the truck to drive 30 minutes downtown to just be outside there.  But, oh how I wish I could get to the point of putting my fear aside just a little bit.  The fear is so real, all-consuming and flat-out scary for me.

The Bible says in 2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.  So, with that in mind I  know my fear is not of God…..but, how…..how do you overcome it?  I don’t have the answer for that and it breaks me.  I am at a loss.  My anxiety, my fear of everything with Hannah controls my every move and that is more disappointing than missing out on things.  My #1 priority is to keep her safe and well. My love for her keeps me on track to do just that, but my fear…….well, it controls so much about me as well.  I have realized today that I lack courage and that is a shot to my self-esteem and self-preservation.

Until next time……….

Part Three……What Not To Say To A Caregiver

OH wow…..this is a tough one for me to write because I know most people who have given me advice mean well.  So, this is no way a slam to those who have offered advice to me lovingly.  Of course, I have also been criticized and given “advice” from those who just want to be mean and think they have a clue about what my life is like when in fact, they know NOTHING about what a caregiver truly goes thorough.  So many people mean well, but sometimes the best thing to say is nothing at all.  These are a few things that either I have heard or friends of mine who are caregivers have heard that are hurtful.  I am sure there might be more things that could be added to this list but here are some things not to say to a Caregiver:

  • Please don’t say…..”everything will be okay.”  Fact is, everything may not be okay.  No one but God knows the outcome of any situation and saying “it will be okay” is not necessarily true.
  • “God won’t give you more than you can handle”…..FALSE!  He will give you more than you can handle WITHOUT Him!  If it weren’t for my faith in God and my hope in Him…..I would not be doing this.  I would have run away, be in a severe state of depression, perhaps started abusing drugs……become an alcoholic……there is NO way I could do this ALONE without Him.
  • This is one of my favorites……”you have to take care of you.”  When I have been told that I just want to laugh out loud.  This is a given.  The caregiver KNOWS they need to take care of themselves but doing it is a totally different thing.  Going back to my last post…..finances, someone to trust, the stress of planning just to get away.  None of those things are easy.  Trust me, the caregiver knows they aren’t okay and they know they need to take care of themselves but it is so much easier said than done.  Hearing it, makes the caregiver feel even worst than they already do.
  • “Let me know what I can do for you.”  It isn’t going to happen.  As a caregiver I am not going to pick up the phone and ask for help.  It isn’t a pride thing either.  It is too much to comprehend bringing someone into your world.  Everyone has their own life and struggles…..picking up the phone and asking for help is not going to happen.
  • “My friend has a friend who knows someone going through what you are and this is what they do.”  Yeah, just don’t say that.  EVERYONE has different circumstances and different things work for different people.  Most likely, the caregiver doesn’t need another person giving advice on what they do in situations.  Unsolicited advice is NEVER a positive thing.
  • “Give it to God.”  Trust me, if the caregiver is a Christian, they have given it to God but it doesn’t mean that makes life okay.  They still have to caregive.  They still have to do their due diligence when it comes to advocating for the person they are caregiving for.  Just because they have “given it to God” doesn’t mean the stress, heartache or pain goes away.
  • “Choose Joy”  Okay, this is where I might offend someone and so I apologize in advance……..people say “I choose joy” all the time but yet no one tells you how they do that 24/7.  You can say all day long “I choose joy” but what does that even mean?  Are you never going to be sad, angry or hurt again?  I don’t get that “choosing joy” thing all the time.  Yes, I can choose to radiate Jesus and Joy in my circumstances but I can guarantee you it won’t be every day of my life because even the happiest, most joyful people I know have bad days.  Just don’t tell anyone to Choose Joy…..it will make them mad and make them think they are doing something wrong!
  • “I don’t know how you do it” or “I couldn’t do what you do.”  PLEASE just don’t say those two things.  You make the person feel as if they are some kind of Super Hero when in fact they feel anything BUT that.  I know in my heart people say those things to try to make someone feel better but it doesn’t do that.  It makes the caregiver/person  you are saying it to feel as if they have to be some kind of super hero/wonder woman/superman.  It is so hard to hear that and feel so inadequate at the same time.  The fact is YOU could do it and YOU would do it if you were faced with it (at least I hope you would).
  • As a caregiver and someone who truly lives authentically if you ask me how I am doing, be prepared to hear something other than “I am okay.”  Nine times out of ten I am going to say…..”you know what, I am having a hard day” or “I am struggling” or “things are just hard right now.”  So, please don’t ask that unless you really want to hear the truth.  The past 4 years I have rarely been able to say, “I am doing good.”  Yes, I fake it a lot just to save face and not appear negative all the time but if you ask me that question, you might not like what I have to say.  So, don’t ask it if you don’t want to hear the truth (at least from me).

I hope this post didn’t sound condescending, negative or judgmental.  I don’t mean to ever come across that way.  These are just some things I have heard the last 12 years (especially the last 4 years) and they are hurtful.  I do know most people mean well and the ones who don’t are just people who want to put their 2 cents in regardless of how it makes the caregiver feel.  The number one thing to remember is just to be kind and sometimes saying nothing is better than saying the wrong thing.

Tomorrow I will give some ideas of what you can do to minister to others who are walking the caregiving journey.  Most of what I will say are things that have been done for me that have helped me endure the hard days.

Until next time………

Part Two……Caregiver Fatigue/Burnout

Caregiver Fatigue/Burnout….is that really a thing?  Yes, yes it is!  Caregiver burnout is described as:

Caregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude — from positive and caring to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or if they try to do more than they are able — either physically or financially. Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones. Caregivers who are “burned out” may experience fatigue, stress, anxiety, and depression. (copied from article published Nov 2017 Cleveland Clinic Website)

Some of the symptoms of caregiver burnout are similar to that of stress and depression some of that includes:

  • Withdrawal from friends, family and other loved ones
  • Loss of interest in activities and hobbies
  • Feeling sad, hopeless, helpless, irritable and/or angry
  • Changes in appetite and/or weight
  • Sleep disturbances/patterns/insomnia
  • Increased illnesses
  • Emotional and physical exhaustion
  • Thoughts of suicide

I am writing all of this out because I know this is a real thing.  I don’t care if you have been caregiving for 6 months or 16 years this can happen.  It is so important to take care of the caregiver as well as the person being cared for.  So much easier said than done, I know that all too well.  Finances are strained, time is limited and the ability to find someone to help is difficult.  There are so many things going against you and the thought of trying to find someone to trust to give you respite is even more difficult; not to mention the planning and prep work it takes to get ready for that break the caregiver so desperately  needs.  This is one of the reasons caregivers don’t take time for themselves as the planning, work and stress that goes into being able to get away is sometimes not worth the small break in reality.

I have felt many of the symptoms of Caregiver fatigue/burnout.  It mimics depression but the problem is the drugs that treat depression do not help this problem.  You see, it isn’t as much in the brain like depression as it is a way of life.  You can’t fix the way of life so in essence you can’t fix the burnout.  It is almost a catch 22.  I have found 2 things that help me.  First, I make sure I take a little time for myself.  Sometimes that is just staying up late after everyone goes to bed just to have peace and quiet and do something that I enjoy like watch a mindless TV show or play Words with Friends.  Of course, I have gotten in a bad habit of staying up too late and I am exhausted the next day so you have to find the right balance so you get the sleep you need.  I am still working on figuring that part out.  Second, for me, I get out at least one night a week.  That might mean just running errands but I get out.  Sometimes I get out and go get a pedicure or have my nails done.  Sometimes dinner out with friends.  Sometimes it is just to go grocery shopping…..whatever it is, get away from your responsibility of caregiving each chance you get.  I am fortunate in that I have a husband who can do for Hannah so I can get away at times.  I know this is more difficult for those people who don’t have someone they can trust.  But again, those are 2 of the things that work for me.  A third thing is a therapist (someone who is neutral and is not invested in the lives of those involved).  I have found a great psychiatrist who I trust and just going to talk to her every 4-5 weeks helps me release some of my stress.  She is a safe place for me to vent and share ALL that is going wrong in my life.

Tomorrow I will blog about what NOT to say to a caregiver!

Until next time………

 

 

Part One: The Life Of A Caregiver

What do you think when you hear the word Caregiver?  Do you truly know what it means?  For the first 8 years of Hannah’s life I never would have put that label on our life.  The past 4-1/2 years, I would.  Caregiving is taking care of someone’s every need 24/7.  Whether that person is physically, emotionally or mentally handicapped or a little of it all.  A caregiver thinks for the person they are caregiving for.  They physically do for that person.  They are that person’s EVERYTHING.  Some caregivers get a break at night and some, like me do not.  It is like being on call 24 hours a day, 7 days a week, 365 days a year.  It is physically, emotionally, mentally and yes, even spiritually exhausting.

Some people are caregivers to children, like I am.  Some to their spouses and some to their parents and/or in-laws.  Some out there I am sure are caregiving for a friend.  Whoever it is for, it is difficult.  The reason I said I would never consider the first 8 years of Hannah’s life as caregiving is because it wasn’t constant doing.  Yes, she had a ton of health issues and surgeries but she was able to go to church and school and we went on vacations and out to dinner.  It was mostly like just being a mom (not saying that isn’t challenging or difficult, it is, but there is relief and respite when needed).  It was in September of 2013 when all of that changed for us and then in March of 2014 when the drastic changes happened and I went from the role of mom to the roll of caregiver. Yes, I am still her mom and I will do this the rest of my life for her; but my role did change.  In January of 2014 is when we had to pull her out of school and my role truly became 24 hours a day, 7 days a week.  I still do things for Hannah you don’t have to do for most 12 year olds.  I bathe her, I wipe her, I brush her teeth, I mash her food up, I prepare her medications weekly and administer them 3 times daily and the list goes on.  There are some things Hannah can and does do for herself.  She dresses and feeds herself, she plays well alone in her playroom (this I am truly thankful for) and she can communicate what she needs to me.  She is still a toddler in so many ways though and taking my eyes off of her for too long can be disastrous.

Caregiving is hard no matter who it is you are caring for.  I have always thought caring for your child would be better than your parent, spouse or friend.  I mean, at least your child is that…..a child.  Can you imagine caring in the same way for an adult?  Well, people do it….A LOT of people do it.  They didn’t sign up for it, but circumstances called for it and they just do it.  They do it out of love, compassion and necessity.  I know a lot of caregivers….I am one.  I am no one special.  I am just a mom who loves her little girl more than life itself.  Did I know when I decided I wanted to be a mom that this would be my life?  NOPE!  Would I change it?  Can I be honest?  YES!  I wouldn’t change the part where I had Hannah.  I would change her life for HER!  I look at her sometimes and it breaks my heart for HER!  I want more for her.  I want her to have fun….to laugh, play, have friends, go to school, church, etc.  SHE wants that.  But, it is not to be right now so yes, I would change that if I could.  As the caregiver, I would change it for me too.  I miss living. I miss going and doing.  Heck, I even miss working and earning an income (never thought I would ever say that).  So, as much as I love her and would give birth to her all over again, there are things I would change.  I wish she was more capable of doing for herself (especially in the potty and bath areas).  I wish we were going to be doing fun mom/daughter things like getting our nails done and shopping.  I wish we could take her to Universal Studios or Disney; but right now none of that is to be.  The life of a caregiver and the life of the person being cared for is difficult, different and it can be quite frustrating for both.

A caregivers role is never-ending and it is REALLY difficult to find respite care.  Not only is finding someone trustworthy and capable difficult but affording it is almost impossible.  I haven’t even mentioned the role a caregiver has in taking care of the medical aspects of the person they are caregiving for.  Doctors, doctors and more doctors (many different specialities), appointments, procedures and as mentioned before medications.  Fighting with insurance is a nightmare and something I have had to do over and over and over again.  I am fighting insurance right now for 2 things for Hannah and it shouldn’t be a fight; but yet it is.  I told Dennis not to long ago if I had a dollar for every minute I have waited in a doctor’s office to see a doctor for Hannah I would be a millionaire right now.  It takes a lot of patience and perseverance to be a caregiver.  It takes sacrifice and inner strength to press on and do what has to be done.  It takes love, commitment and grace to do this day in a day out.  I never in a million years would have dreamed that the role of caregiver would be a role I would have.  I honestly didn’t think I had it in me and there are days I DO NOT want to do it…..but, those are the days God gives me just enough strength to carry on.  A caregivers role is a lonely one.  Oh, I could write a book on the plethora of feelings a caregiver goes through.  The loneliness, sadness, heartbreak and grief.  But, I can also testify to God’s grace and goodness in those bad times.

I am not writing this series of blog posts for sympathy or even empathy.  I am writing it to bring attention to something that many don’t even know exist as they have never had to do it.  I am writing it for the caregivers so they know they aren’t alone.  I am writing it because it is on my heart as I know people who are hurting and suffering silently because they are caregiving alone.  I am writing it for my own sake to show myself that in my own life I have purpose because there are many days that I wonder why I am even here.

Tomorrow I will blog about something I have experienced called Caregiver Fatigue and how we as caregivers have to be sure to take care of ourselves.  Something I am still not very good at.

Until next time……..