Welcome Back To Childhood; A Lesson When Parents Revert

***Disclaimer…..this is all true but meant to make light of this situation.  No disrespect to my parents or anyone else in their golden years.  We just have to embrace what it is; although I see this as the beginning of a “parenting your parents” journey. Perhaps it will remain fun and entertaining….goodness, I hope so.***

 

Oh y’all…..getting older is for the birds because all of a sudden you change places with your parents.  It sneaks up on you and bites you in the backside too.  You don’t see it coming….it just happens when you least expect it.  Since August it has become apparent to me that I have slowly been changing places with my parents.  Little things have happened over the course of a few years and then my mom fell ill in August and well, that slow change became a quick one.  Yesterday, my dad had surgery.  It was hernia surgery but that is major for him due to his bad heart….which for the record I found out was a lot worse than he has let on.  Actually, I found out a lot today and have decided it is time for me to take more of an active role in my parents healthcare.  Oh joy…..I have a special needs child and I just now have inherited 2 more children in the form of my parents.  Here are some things I have noticed since August:

They don’t see things they way you do!  You can tell them things and they will refuse to see it your way.  There is no way on God’s green earth that you can be correct about anything; I mean you are just a child for Pete’s sake!  I could say the sky was blue and the grass was green and my dad would tell me it wasn’t. He can be very argumentative too…..of course I inherited that from him so you can imagine the fun banter we have back and forth.  He told me yesterday…..”I don’t like you, you can leave.”  Of course I reminded him that I have always done the opposite of what I was told so I stayed longer…..that was fun!  He and I might have to get couples therapy to continue in this reverse parenting journey…..just sayin’.

They live in denial!  They think they can still do things that they did in their 30’s.  For example in my parents case….at the ages of 74 and 79 they are both still working full-time.  I mean WHY?  They have a pot to pee in, it’s not like they are destitute.  This is the time in their life they should be enjoying retirement.  I mean, you work ALL your life to just keep working until you die?  Where is the fun in that.  My parents both swear that they LOVE, LOVE, LOVE their jobs.  I mean, I get it…..it gives them something to do and they both love the people they work with and for but work part-time or volunteer.  Why are they working 40+ hours per week?  I just don’t get it.  Enjoy the life they worked so hard for…..different generation I guess.  I have been retired for 13 years and it was the best decision I ever made!  HA!  Don’t get me wrong, I don’t want them sitting around doing nothing but there has got to be more to enjoying your later years than punching a time clock.

They think they can still drive well!  Okay, this is a huge one.  Have you ridden with my dad?  Trust me, you DO NOT want to.  You are risking your life just going a mile down the road.  The man CANNOT and I repeat CANNOT drive.  You can ask anyone who has ever been a passenger in his vehicle.  Most people (even family) swear they will never ride with him driving again. I am one of those people.  You know the bumps in the middle of the road….the reflectors?  I think dad makes a game of hitting EVERY.DANG.ONE of those things.  Hands-free phone calls…..yeah, not safe…..at all.  I mean, it would be if the dude could multi-task but that isn’t his strong suit.  He either needs to talk on the phone OR drive…..NEVER both!  Oh, and since I am on the topic of dad and his driving…..let’s “hypothetically” say he is in the right lane and needs to be in the left lane to turn a mile up the road.  Well, what if he “hypothetically” just STOPS in the middle of traffic until he can get over.  I mean, stops….with traffic barreling up on him…..stops until the left lane clears and then he moves over like nothing has happened.  In regards to mom, she is a safer driver but if you want to get somewhere in a timely manner…..you had better drive.  I truly don’t believe she has ever gone 1 mile over the speed limit….like no where…..ever….she is the little lady peering over the steering wheel and everyone passing her by.  I seriously have been in the passenger seat trying my hardest to hit the gas on my side of the car (it doesn’t work).

They refuse to admit they are old!  My dad said yesterday “I am 79 in age only…..it’s just a number.  I am still physically and mentally in my 30’s.  Ummmmm, no pops…..no!  Let’s call a spade a spade….YOU are old!  That is not a bad thing.  It is just time to embrace it, enjoy the fruits of your labor (which means quit work and travel, go see movies, volunteer at a cat shelter, eat out, start researching your assisted living home possibilities so I don’t have to……)

They are stubborn!  This is a BIG one.  Oooooo, stubborn as mules I tell ya!  “Dad, the doctor said no driving, no work, no church for 2 weeks and until he releases you at your post-op appointment.”  His response, “That is just stupid.  I am going back to work tomorrow.  I can’t just sit around and do nothing for 2 weeks.”  I replied, “Uh, yes you can and you don’t have a choice.”  His response, “How much you wanna bet?”  Oh dear…..stubborn as the day is long.  Mom isn’t as bad, but she has gotten more stubborn the older she has gotten.  Right now, with mom still in a lot of pain with her back and dad now recovering for the next 2 weeks it will be quite interesting to say the least.  I am glad I don’t live with them!

They are afraid their money will run out before they do; they have become cheaper than ever before!  Can I get an AMEN on this one?  Oh my gosh…..if I have heard it once, I have heard it a thousand times…..”We have to work because we don’t have enough money to take care of us in our old age.”  What do you mean “in your old age?”  You are already there dad!  He will say, “I don’t want to run out of money because I don’t want to live under a bridge.”  REALLY dude?!?  I mean, you are a stubborn pain in the butt sometimes, but your kids aren’t gonna let you live under a bridge.  The only thing your children will not do for you is change your diapers (y’all I have to draw the line somewhere)….BUT I will hire someone to do it; so you are golden!

I had to repeat to dad about 12 times yesterday before leaving the hospital his instructions for the next 2 weeks.  Sit in your chair, take your pain meds, drink fluids, pet the cat, watch Gunsmoke and MASH.  I then told him to repeat back to me his instructions for the next 2 weeks.  He said, “get up, shower, drive myself to work.”  Oh my…..this goes back to that stubborn gene.  Let’s talk pain medication, mainly Narcotics.  The poor dude is afraid he is going to get addicted.  He thought that of my mom and fought with the doctors about giving her Narcotics.  I finally had to bop him upside the head and tell him that Narcotics are good things when used appropriately and for a short period of time.  Don’t get behind the pain, stay on top of it or healing will take longer.  My gosh…..I have told him the same thing a bazillion times and he still argues about Narcotics.  I mean, if you don’t need them, don’t take them but if you do….TAKE THEM; that is what they are for!  This goes hand-in-hand to the prove the point that I know nothing and am just the “kid.”

Now y’all, I have a child who is 13, but cognitively she is about 5 years old.  My dad…..well, he is about her level.  Mom acts a little older.  Dad…..well, y’all need to pray for my mom the next 2 weeks.  I am afraid though she won’t put her foot down hard enough so then I will have to go over there and put my foot somewhere…..perhaps where the sun doesn’t shine.

Raising parents….I have a feeling this adventure will be unlike anything I have ever done before.  JOY JOY!  Here is to all you “kids” out there who are raising your parents or have raised your parents!  I feel ya, I hear ya and I am right there with ya!  Here is to new adventures and some truly laughable moments still to come!

Before surgery

 

After surgery!

 

Until next time…….

 

 

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Broken or Brave…..Walking The Life God Gave Me

I haven’t blogged in a while not because I haven’t wanted to but my time and energy has been focused on other things; mainly Hannah.  There are so many thoughts that go through my head. It sometimes is like having 700 tabs open on a computer…..sorting through those tabs (thoughts) is hard.  There is so much about myself that I am down on; yet so much about myself that reminds me that God is still working on me and I pray that I am allowing Him to do what He needs to do.  Sometimes that “work” though is painful, lonely, scary and sad.  I feel like I should be wearing an “under construction” sign so people know that I am not who I want to be or who God wants me to be…..I am almost thinking I never will be.

Life this year (2019) so far has been WAY difficult for me.  With my illness and Dennis being out-of-town so much (more than ever….he is out-of-town again right now) and with seeing Hannah regress and possibly have a “new” issue/diagnosis on top of everything else; 2019 has not been a great year.  I try to put a smile on my face and “fake it until I make it” but that is not always easy.  I think the word that can best describe me right now is just broken.  I don’t feel brave or like I have it altogether.  I feel discombobulated and out of sync, out of touch and just plain crazy most of the time.  It is like every time I try to do something I get distracted, disinterested, unmotivated or something happens to draw me away from it and then I never finish it.  I have a type A personality so then when I don’t finish something, it makes me mad and then that broken feeling sets in and the cycle continues all over again.  I am probably making no sense in this blog post!  HA!  BROKEN…..LONELY…..OUT-OF-PLACE……Like you don’t fit in anywhere or with anyone….have you ever felt that way?  That is the best way I can describe what this year has been so far to me. I am not sure why God is allowing this particular “valley” for me.  What is He trying to show or teach me?  What is it that I am supposed to learn from this?

I bought this book…..100 Days to Brave last week and started reading it.  I highly recommend it.  It is a devotional book but it is an easy read…..not long, drawn out or too hard to understand. I am tired of feeling broken.  I am tired of being lonely.  I am tired of feeling out-of-place.  I want to be brave.  I want to be okay with the season of life I am in and on this journey.  There is so much about my life that is hard but there is so much about my life that is easy compared to others.  I find when getting discontent, trying to remind myself about the joys of my journey and the parts that are truly easier than most.  I am so blessed not to have to work outside my home.  I am so blessed that I have a husband that will do pretty much anything I ask of him and he never makes me feel like I am a burden.  He never questions when I spend money or what I do when it comes to our home or with Hannah.  He kinda just allows me to be the CEO and CFO of our life (which again my Type A personality really likes/needs).  HA!  So, I do have so much to be grateful for but sometimes the hardships (especially Hannah’s health issues) overshadow the good parts and I feel weary, weak and broken.  I so wish I could just fix it all for her.  I wish I could take all her pain and misery on myself and make her whole.  I would do it in an instant.  Until I became a mom I had no clue what unconditional love was……I sure found out with Hannah.  I remember Dennis wanting another baby so badly and I just couldn’t do it mentally or emotionally.  I finally one day looked at him and said…..”I cannot do this again as loving someone this much HURTS.”  It literally hurts to love this much……it isn’t a bad hurt except for the fact that Hannah has been sick her entire life and the plethora of health issues continue to compile.  We are dealing with a whole new possible issue right now that has blindsided us.  It is just never-ending and so very hard.  But, I want to be brave instead of broken.  I want to rise up above the struggle and be and do more than just get by.  I want to take my journey and use it to help others.  I want to be brave…..I want to take all of this brokenness, loneliness, helplessness and these challenges and make it all matter.  I am trying to figure out what that looks like for me….for Dennis….for Hannah. We have A LOT of changes happening for us this year and I want to take these changes and our life’s circumstance and make it matter.  It is time to rise up and be brave instead of broken and I am determined to figure out what that looks like for us.

On a different note, I am not sure who needs to hear this but I thought it was blog worthy.  Being a caregiver for anyone regardless of who it is for, it is difficult.  Perhaps it is your child, parent, sibling, grandparent or friend.  Whatever the case and no matter for how long, it is an exhausting and lonely life.

Dennis left town AGAIN on Wednesday, but he texted me this as a friend of ours sent it to him and told him he was praying for us.


My response to his text was “TRUTH.”  I have walked this road for 13-1/2 years.  I never in a million years dreamed that I would be considered a “caregiver” just a mom but believe it or not there is SO MUCH about our life with Hannah and that I do not share publicly as I truly do have private things (shocking, I know).  I told someone the other day that living with Hannah is almost like caring for someone with Alzheimer’s or Dementia.  It is the same repetitive phrases, the same repetitive actions, the same routine, the same everything over and over and over again. If you get out of that routine it sends Hannah in a downward spiral of agitation and anxiety.  If there are too many people around she gets agitated and overly stimulated.  She cannot handle loud people, places or environments.  She honestly doesn’t do well going anywhere and hates to leave our home, which is her safe place.  When I say we are home 24/7, it is the truth….other than doctor visits and the occasional trip to get some take out……we are in Hannah’s safe place…..our home.  Not an easy road and trust me I have had a lot of people criticize me for how we do things and look down on me.  But, due to Hannah’s low immune system, her health issues, her anxiety and sensory processing disorder until you have walked in our shoes you have no clue why we do the things we do.  I finally came to terms with not listening to the negativity of others who don’t understand; but it isn’t easy or fun a lot of the time.  I rely on God’s grace and mercy to carry me through and you know what?  HE HAS and He continues to.  I am thankful for those who have chosen to walk with us and love us on the journey. Please pray for Hannah as we are doing more testing next week to see what is going on in her little body that is “off.”  We have a lot of questions and no answers and we covet your prayers.

If you are struggling, if you are sad, lonely, broken and if your journey is hard……remember you are NEVER alone and you are loved.

Until next time………

 

 

Silence and Grace

I have been silent for awhile…..I needed to be still……I needed time to myself……I needed rest for my heart, mind, spirit and soul.

I am not one for silence.  I am extremely verbal and sometimes not always in good ways.  I, many times speak my mind before really pondering it and giving it the proper thought and attention it needs before just blurting it out.  The past 2-3 weeks though, God allowed me to be knocked down to my knees.

I have not hidden the fact that I have been sick since May of last year and now trying to find the proper medications and dosing the month of January was a tough one for me.  It isn’t easy being sick and trying to care for your special needs daughter and your husband.  The fact that he was out-of-town and working so much the month of January made it more difficult.  One of the medications I was on was what I renamed “Devil pill.”  It was an awful medication with horrific side effects; even though it treated my symptoms beautifully, the side effects made it not worth it.  I lost a ton of weight, had massive brain fog, hypothermia, fatigue and anger. Not to mention, the long-term damage that it most likely has done to my eyes (thanks to a “rare but severe” side effect, that of course affected me). During that time I found it important to just be still, remain silent and pray for grace to get through.  Trust me, you didn’t want to hear from me and staying off social media was best due to the mindset I was in……

During that time though, I felt unappreciated, overwhelmed, unworthy and very much alone.  But, what I didn’t see happening was that God was using that time to draw me closer to Him.  I found when I was so alone that I only had one person to turn to….HIM!

Several things stood out to me and I thought I would share those with you now…..

1 Samuel 16:7

But the Lord said to Samuel, “Do not consider his appearance or his height, for I have rejected him. The Lord does not look at the things people look at. People look at the outward appearance, but the Lord looks at the heart.”

“Overlooked by everyone but handpicked by God”……I read this in Lysa TerKeurst Devotional book entitled Embraced.  It talked about how the mundane tasks of every day life can be daunting…..the same things over and over and over again.  In the midst of these mundane tasks (laundry, cooking, cleaning, wiping noses and hiney’s, paying bills) we are being trained.  There is character building, attitude shaping and soul defining.  We may feel overlooked and under-appreciated by the world but we are handpicked by God for a particular purpose.  Perhaps you know what that purpose is in your life and maybe you are still trying to figure it out; but God is using the time of silence and isolation to mold you and me into who He wants us to be and to fulfill the plan He has for our lives.  It might not be the plan we envisioned; but I truly believe He has one…..for each of us.  Sometimes though, if you are a difficult learner like I am, He has to get your attention by knocking you down and making you rely totally and completely on Him.  I truly don’t recommend this kind of education; but it seems to work best for my stubborn self.

James 1:2-18

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.Let perseverance finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind. That person should not expect to receive anything from the Lord. Such a person is double-minded and unstable in all they do.

Believers in humble circumstances ought to take pride in their high position.10 But the rich should take pride in their humiliation—since they will pass away like a wild flower. 11 For the sun rises with scorching heat and withers the plant; its blossom falls and its beauty is destroyed. In the same way, the rich will fade away even while they go about their business.

12 Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.

13 When tempted, no one should say, “God is tempting me.” For God cannot be tempted by evil, nor does he tempt anyone; 14 but each person is tempted when they are dragged away by their own evil desire and enticed. 15 Then, after desire has conceived, it gives birth to sin; and sin, when it is full-grown, gives birth to death.

16 Don’t be deceived, my dear brothers and sisters. 17 Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. 18 He chose to give us birth through the word of truth, that we might be a kind of first fruits of all he created.

These verses struck me because even though God is working right now in my life, it isn’t fun.  It is hard, grieving, testing and full of trials.  I would much prefer easy, predictable, comfortable and peaceful; but that isn’t where I am right now.  But, I know that God is working on my heart and in my life.  He is showing me what true grace and mercy looks like and I can tell you that it has made me more interested in reflecting that grace and mercy and extending it to others because I know how good it feels when it is extended to me.

I read this in New Morning Mercies by Paul David Tripp a few weeks ago:

I wish I always carried it with me

I wish it always shaped the way I look at life

I wish it directed my desires

I wish it was the natural inclination of my heart.

I wish remembering your boundless grace would silence my grumbling.

I wish my worship of you, my trust of you, my rest in you would drive away all my complaint.

If my heart is ever going to be freed of grumbling and ruled by gratitude,

I need your grace to remember, grace to see, grace that produces a heart of humble joy.

Sometimes God has to take you out of your comfortable place.  He has to take you away from everything and everyone that could be a distraction and He has to get you to the point where you are totally reliant on Him.  The past 2-3 weeks especially, I have learned I cannot do anything alone.  I can fight, I can scream, I can cuss but until I lay the sword down and stop fighting, screaming and cussing and remain still and silent and give it to HIM and Him alone I can’t do anything. He has a plan for my life, I know that (I might not have been nice to you if you had told me that 2 weeks ago though). He has a lot of work to do on me…..I am not a quick study or easy learner. I like things done in my own way but I need to learn to get out of  my own way and let Him work.  I don’t like this season I am in.  It isn’t fun.  I hurt (physically, mentally, emotionally and spiritually); but it is where He has me.  Being still, being silent and allowing his grace to cover me is where I am right now.

I am finding joy in the smallest things.  Looking at my daughter’s face and the way her smile melts me or the way her eyes light up the room.  Even when I am hearing the same repetitive phrases over and over and over again; I am finding the joy in the fact that she talks.  So many mom’s would give anything to hear their child speak.  Sometimes I make the comment that it is like living with a patient with Alzheimer’s because of the repetitive speech, patterns and routine in Hannah.  Y’all, that is hard and sometimes makes me want to scream BUT…..the fact that she is here…..alive……happy……content……those are things to find joy in.  So in the difficult, hard and grieving times there is joy to be found.

I am giving myself more of a break too……the laundry, dishes, floors, bathrooms…..it will all be there.  Sometimes you just have to take a time out and do what you can and then give yourself permission to let it go just one more day.  Take that time and play a game with Hannah or read a book or bake a cake.  It is in those moments that you feel free to just be okay and know that in the words of Scarlett O’Hara…..”tomorrow is another day.”  Allow yourself to breathe……rest……recoup and then try again tomorrow.

Be still and know that He is God and He is in control and with Him all things are possible.

Until next time………..

Evil PANDAS (Part One)

I get asked A LOT about PANDAS.  What it is…..how it affects Hannah….how we treat it…..tons of questions.  We are coming up to our 5th anniversary of PANDAS.  Not an anniversary we celebrate, mind you; but one that is forever etched in my mind, soul and heart.  So I thought I would start a little blog series on PANDAS.  Not only to share our journey but to bring some awareness to this dreadful, life-altering, life-shattering, life-changing and scary disease.

First….what is PANDAS?

PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.  Actually, it is Autoimmune Encephalitis and when we end up in the Emergency Room or seeing a new doctor for ANY reason that is the terminology I usually use.  So many doctors still either are not familiar with PANDAS or refuse to acknowledge that it is an actual disease BUT they do acknowledge AE and technically it is the same thing.  We just know that a strep infection is what triggers PANDAS.  I will get more into doctors and their beliefs and unbelief’s later in this series.

PANDAS is an instant onset of symptoms after a strep infection.  For Hannah, hers started with seizures, a 105 fever and an instant onset of severe OCD, aggression, rage, anxiety, tics, insomnia and depression.  I literally put her to bed one night on vacation in the mountains of North Carolina perfectly fine and by 2pm the next day she had multiple seizures and was burning up with fever and has never been the same since.  That was March 8, 2014!

That day our lives changed completely.  PANDAS changed our life COMPLETELY.  I will use this blog series to go into lots of detail as I believe we have an important story to tell; one of which I need to take my time and tell in detail and over a series so each blog post isn’t too terribly long and drawn out.  I believe our story can resonate with many out there struggling and perhaps can help someone.  As we approach our 5th year living with this disease I want to help other moms, dads and kids living this nightmare.  We have come A LONG way on this journey but the little girl we had prior to PANDAS is no more.  We lost her and she was replaced with a little girl who has a lot of “different behaviors/personality changes” and is ruled by her OCD, routines, tics and autistic nature all because of a strep infection that traveled to her brain.  She is forever changed…..there is no turning back the hands of time or getting the “old Hannah” back.  The Hannah prior to the age of 8; prior to PANDAS is gone.  The Hannah since PANDAS who is riddled with severe OCD, tics, anxiety among other debilitating things (which I will expound on later) is the Hannah we have now.  We don’t love her any less; in fact we love her more…..she requires more love, care and attention than she once did.  She is more difficult, at times to care for and at the age of 13 instead of getting easier, in many ways, it gets harder but we persevere by the grace of God and our love for her.

This PANDAS journey is not for the weak of heart, mind or soul and not something I would wish on any child, parent or sibling.  It is very real…..very debilitating and very unpredictable.  Join me on this blogging journey as I take you on our 5 year battle with this dreadful disease…….

 

Up Next:

Evil PANDAS (Part 2) Our Journey:  Instant Onset

Until next time…….

 

NOT JUST A Special Needs Mom

I am piggy-backing off of Sunday’s blog post because I felt as if there was more to be said.  I received a lot of positive feedback on that post and some negative too so I will address both of those things.  Let’s get the negative out-of-the-way……

I AM NOT OPPOSED TO ANY CHURCH or opposed to people going to church!  What I find frustrating is the thought process that church attendance is all there is to being a Christian.  I know many very strong Christians who DO NOT attend church.  Being a believer is having a personal relationship with Christ….PERIOD!  Going to church or not going to church doesn’t make you any better or worse of a Christian.  Is church a good thing?  Absolutely, if you can find a place where you fit in and that fits what your family needs then go…..worship…..enjoy!  In my opinion there is no one church that is any better than another.  It is your choice what fits for you and your family.  Be as involved or as uninvolved as you wish.  Now, what I do have a problem with is the church thinking that people are going to flock to those 4 walls.  That isn’t going to happen.  The church has to reach out to their community; not just sit in their 4 walls thinking the lost or homebound are going to come to them.  Being the hands and feet of Jesus to a lost world means to get out there and reach those who won’t or can’t come to the church.  The other part of my blog on Sunday was putting in place a program for kids with special needs.  That might look different depending on the size of your church.  It might be a buddy system, a whole large program, a small one-room place for even just one child……just have something so parents have a safe, loving, Godly environment to bring their child if they so choose.  For the record, in our case, due to Hannah’s immune issues…..it isn’t possible……it would have been prior to PANDAS; but now it isn’t.  But, there are many families with kids who have special needs who would bring their children to church who don’t have the plethora of health issues Hannah has, if there was a safe, loving environment to bring them to.  That is all I was saying.  For those of you who thought I was bashing the church…..well, you don’t know me very well.

Do I personally miss going to church and would I go if I could?  No, I personally don’t miss it and no, I do not really think I would go, not for me anyway…..that is just the most honest answer I can give.  And, y’all before I get “preached” at there is a whole bunch of stuff I could write about but I am not going to.  The bottom line is we all have our own personal thoughts and feelings about things.  Some things are best left unsaid and for me, for now, I will leave the plethora of reasons left unsaid. But, that answer doesn’t change the fact that I love Jesus with my whole heart and I am totally dependent and reliant upon Him!  You can truly have a relationship with the Lord and NOT go to church!  I am living proof of that!  Hannah LOVED church when she was able to go and she LONGS to go back and so for her and for that fact, yes, I would do anything to take her…..so, for her I would go back!  But, I also have to put her health as my #1 priority and after the lab work we received back just yesterday…..well, taking her to a big, crowded, public place would not be in her best interest especially right now.  But, you know what…..God, has made me content in that…..for so long, I was angry, bitter and resentful and now I am happy and content in my little bubble here at home.  That is God, y’all…..contentment is from HIM!  So, I rest in the fact that not going to church is okay and I am no less a Christian for staying here at home and keeping Hannah safe, healthy and well!  You know, HE gave her to me, to do just that!

NOW…….let’s talk about how I am not just a mom of a child with special needs…..

One of the things I struggled for years with after having Hannah was the loss of my identity.  I was either “Hannah’s mom” or “Dennis’ wife.”  Not that either of those are bad things but there was and is a lot more to me than those 2 things.  I am a woman with dreams, desires, passions, goals, hopes, hobbies, loves, likes and dislikes.  Prior to Dennis and Hannah I worked (and even after marrying Dennis I still worked).  For the longest time after Hannah I lost so much of who I was.  I left a job I loved.  I was solely a mom who wore the hats of maid, therapist, nanny, chauffeur, chef, teacher, personal shopper, etc…..it took me years to remember that I was MORE and I deserved and owed myself MORE!  It didn’t mean that I loved Dennis or Hannah any less; it just meant that I loved myself too.

It really happened for me when PANDAS hit back in March 2014 that I realized I needed a break.  It was May 2014 that I think it hit Dennis.  He told me to pick any place and he gave me a budget to work with and he sent me away by myself for 5 days.  Little did he realize I would pick Vegas!  HA!  So, in May 2014 I flew by myself to Las Vegas for 5 days and had a blast ALL BY MYSELF!  That is when it hit me…..I needed time for me periodically.  Since then, Dennis has been really good at making time for me to take a few long weekend trips here and there either by myself or with girlfriends and he always makes time on his schedule for me to have nights out with girlfriends.  I wish there were more of them but hey, I will take what I can get.  He and I started taking more trips together; which are more difficult due to childcare, but we are making it a priority for it to happen at least 2 times per year.

When I got sick in May I started taking better care of myself.  I just turned 47 and let’s face it I am not getting any younger, nor am I looking any younger.  There are pedicures, facials, massages and good skin care in my future (thanks to friends who encourage me) HA!  I also eat really well and the exercise thing is slowly happening…..I just need to find my energy!  HA!

The point is……there is so much more to me (any mom for that matter) than just being a mom.  Being a mom is a gift, I know that; but it isn’t WHO we are.  We have to take time for ourselves.  I know, for me personally, taking care of me is so very important as Hannah will be with me forever and I need to be here and healthy to take care of her.  I can’t do that if I don’t take care of me NOW!  Special needs mama’s wear MANY hats but none of those hats define WHO we are and what is in our hearts.  I know for me, when I am out with friends I like to talk about everything except Hannah!  I don’t mind briefly catching people up on her; but I want to talk about other things and just laugh, have fun and enjoy the freedom…..I like to “adult” and not talk children.

Special needs mama’s are women just like anyone who love to go out, have fun, take trips, laugh, eat, drink and be merry!  Some of my favorite memories over the past few years are those day/nights out with friends just having fun.  If you know a mom who has a child with special needs she is probably stressed out, lonely, afraid, fatigued, sad, anxious, worried, among other things and you might think you have nothing at all in common with her, but I guarantee you that you do.  If she is like me, there is so much more to her than the definition of “special needs mom” and if you get to know her you will realize she can be a really good friend too.  She might be a little bit more frazzled than most, a little bit crazier, a little bit more OCD and perhaps a germaphobe (yes I am referring to myself here) but we are good for laughs (I know I am slightly crazier than most of my friends and you never know what will come out of my mouth)!  If you know a mom who has a child with special needs…..pick up the phone, call her up (or text) and invite her out on your next girls night.  You might just have a great time and make a great new friend!  Hopefully, she will fix herself up and won’t look like the picture below…..HA!

Sometimes this could be a self-portrait of me!  HA!

 

Until next time………

What Special Needs Parents Do and Don’t Need

This really spoke to  me this morning.  It kind of hit me dead in the face.  For 13 years I have heard about all the things that Hannah needs.  The things I have to do differently than other parents and made aware of the things I need to change doing or can’t do.  Honestly, it is exhausting.  I find myself, at times, thinking “if she were just typically developed, so much would be different.”  I can’t stay in that mindset for long as it will put you in a pit of despair (which I have been in more than once on this journey).  Instead I do try to focus on what I am doing right or how much easier some things are and what we might not have to deal with as she gets older.

So much of the “positive criticism” I have received over the past 13 years is GOOD.  It has come from professionals who know better than I do what Hannah needs due to her speech/language, her motor skills and physical abilities.  It has come from AMAZING doctors who are wiser than me and who I would be lost without.  I welcome that advice.  I need it.  I even ask for it.  Those who are working with kids with special needs (teachers, doctors, nurses and therapists) KNOW what they are doing and I listen.  So that is not the “improvements or change” that I am talking about.

I have, over the years, received a lot of harsh criticism both to my face and behind my back.  Everything from what I should do to improve Hannah’s immune system to her behavior to even “curing her Down Syndrome.”  Yes, someone told me there was a cure…..SMH!  The bottom line is over the years I have received more harsh criticism from “others” than I have kudos for what I am doing right.  THAT is hard……it is hard to be critiqued and told what you are doing wrong or what you should change to make your daughter more independent or cured from health issues.  I was even accused more than once of my faith not being strong enough; because if it was I would take Hannah to church and trust God that she would stay well and not get sick.  I have to say that comment broke me and actually is one of the reasons I have NO desire to step foot in church.  The judgements from people who “think they know” has jaded me over the years.  These are people who have no clue what my life is about and have never tried to understand.  It is their lack of willingness to put themselves in my shoes and their need to speak about things they no nothing about that makes me crazy.

Hannah is different, I am well aware of that.  I live with her 24/7.  I know that she is cognitively slow and will take years to master some of the things “typically-developed children” do easily and quickly.  Hannah is 13 and I still take her to the potty and bathe her.  I still help her brush her teeth and I mash her food up so she doesn’t choke on it.  She is not self-sufficient (although she does make her bed every morning on her own, cleans her playroom spotlessly without being asked, picks out her clothes and dresses herself), YAY for those things!  I can’t tell her to “go outside and play” or leave her unattended AT ALL!  Dennis and I will never be able to leave her home alone just to go to dinner or even send her to stay with someone at their home overnight.  There is so much that is DIFFERENT than most.  I am not complaining here, just stating the reality of raising a child with special needs.  It isn’t easy and then when someone comes by and offers you unsolicited advice and the things YOU need to change or do to improve your child’s quality of life it just doesn’t sit well.  Most of that advice has always come from either people who don’t have children or who have typically developed kids and think they are experts on all children.  News flash……I have a special needs child and I am not even an expert on kids with special needs let alone typically developed ones.

Can I tell you what a special needs mom needs?  They need:

  • understanding
  • compassion
  • invitations to hang out and do normal things; a chance to be child-free and adult!
  • a listening ear; not advice
  • someone they can laugh with, cry with, cuss with if need be
  • someone willing to learn what their life is like so perhaps they could offer help with childcare so that the special needs parents could just go out to dinner without worrying about paying someone.  Y’all, babysitting is NOT cheap!  We don’t do it often due to the cost.   Most people don’t need babysitters when their child is 13 years old!  Dennis and I do a lot of things separately so one of us can stay home with Hannah!
  • no judgment…..Special needs parents need a no judgment zone with friends who they can share their heart with and not be looked down upon.
  • an offer to bring a meal in the really hard times
  • a text, a phone call, a message and FB post just checking in on them
  • NEVER say (unless asked for advice)……”well if it were me” or “this is what I would do” or “have you tried this” or “well, a friend of mine does this.”  Just listen, I promise if the person wants advice they will ask for it.  Oh and please never say “God won’t give you more than you can handle.”  This is the biggest pet peeve of mine.  The fact is God WILL give you more than you can handle ALONE……this is when He wants you to fully rely on Him.  Trust me when I tell you this…..without Christ and my reliance on Him I would NOT be okay right now.
  • Girlfriends to walk the journey with.  Not just other special needs mama’s but friends of all walks of life.  Special needs parenting is VERY lonely.  Trust me, I know this too well.  I have been “isolated” now for 13 years, but especially the past 5 years and it hasn’t been easy. At times, I have even been resentful and jealous of Dennis because he gets to go and do all the things he always did and I have been isolated.  Since I am on this subject my next bullet point is HUGE!
  • CHURCH……wake up, get out of your comfort zone and out of your 4 walls and go beyond those 4 walls and minister not only to the lost but to your own church members.  There are people who are HOMEBOUND who don’t choose to be…..you can’t be the hands and feet of Jesus sitting in a building…..hate to break it to you.  You can’t minister sitting in a pew.  You have to get out and reach out to those that won’t or can’t come to you.  On top of that develop a ministry in your church for those with special needs.  I know a lot of churches are beginning to see the need for this and are coming around.  Like the movie Fields of Dreams…..”if you build it, they will come.”  There is a whole group of people out there wanting a place to belong, a place to call home, a place to find love and acceptance…..the church should step up!  For so long I have kept my mouth shut to the public about my feelings of the church but by keeping my mouth shut they are just my feelings and don’t matter.  Perhaps advocacy for this very thing is what is needed.  Perhaps someone hearing this and doing something about it would then benefit someone else in the special needs community.  Maybe my little voice would help get something started.  Sitting in your pew is not a ministry……reaching out to the world is…..sometimes that is even reaching out to your own membership and loving them where they are!

Okay, well, this blog post turned into a mini novel and it was not my intention.  Sometimes I sit down at the computer to do a quick blog and it turns into so much more.  I guess I have more to say than I realize at times and it pours out of me.  Hopefully the right people will read this and prayerfully a change can take place in our hearts, lives, homes and churches.  I might have more to say about this soon…..so stay tuned!

Until next time……….

 

Fierce

Happy New Year to each of you!  I started the new year (actually the past week or so) not feeling really well.  I planned to do a New Year post yesterday but you know…..life and all!  HA!

I noticed on Facebook a lot of people were choosing a word for the year.  A word that they wanted to claim for themselves to define how they wanted to be in the new year.  I came up with several good words….intentional, courageous, hopeful, strong, joyful but I couldn’t decide on just one word until yesterday.  Dennis was off work and I have to take those opportunities while he is home to run errands.  I have a ton of shopping that I need to do in regards to remodeling our kitchen and such but yesterday  I hit up my least favorite store (Walmart), one of my favorite stores (Hobby Lobby) and Publix.  I didn’t really need anything in Hobby Lobby but I wanted to see if anything caught my eye and something did.  It was a sign that had this saying:

It hit me…..FIERCE!!!!  I want to be fierce!  I actually immediately thought of Hannah for this as well as she already is fierce!  I just loved this and it kind of gave me purpose, drive and the motivation that I lack so often for this new year!  There is so much I want to do this year, some things I have been putting off waiting for the perfect time and let’s face it, there is never going to be a “perfect” time to do anything…..you just have to do it.  I have a lot on my plate, but so does everyone and I need to prioritize things and conquer them…..being fierce is a word to describe how I plan on conquering the tasks at hand for 2019.

The definition of fierce is:

adjective

having or displaying an intense or ferocious aggressiveness

synonyms:  ferocious, savage, vicious, aggressive, cutthroat, competitive, keen, intense, strong, relentless

vulgar slang:  ass-kicking (this cracked me up)

a feeling of emotion or action; showing a heartfelt and powerful intensity

synonyms:  intense, powerful, vehement, passionate, impassioned, fervent, ardent

I am personally going with the feeling and emotion/action here…..”showing a heartfelt and powerful intensity” and “powerful, strong and passionate.” I promise I won’t be ferocious, savage, vicious or aggressive!  Although this new medication I begin next week has aggressive/personality changes as one of the most common side effects! So be forewarned!  HA!

I just want to be stronger this year and having a sense of fierceness is not a bad thing.  Being fierce can help you push through the adversity that life throws at you and helps you come out on the other side stronger and even more relentless than you were before.

I have a lot of obstacles to face this year, but don’t we all?  Is life easy for anyone?  If it is for you, hit me up and tell me about it!  HA!  How we deal with life and what is hurled our way is what matters…..this  year I am hitting it full on with a fierceness that I have never had before!  Let’s do this!

Hello 2019…..

Until next time……….