This Lonely Life

I had the privilege of chatting on the phone this morning with a friend of mine; another mom of a child with special needs and she said something that I have thought many times…..”being the mom of a child with special needs is so lonely.”  Oh, how that resonated with me.  I feel so lonely most of the time.  I have made some wonderful friends in this “special needs community” and I am so thankful for all of them.  But, we are a small community and the world around us doesn’t share our same journey.  There is a very small percentage of us who walk this special needs journey and because of that, it can be a very lonely path.  Even those of us who have a child with special needs have different “needs” that some know nothing about.  Some have “typically developed” children and a child with special needs which poses issues and challenges I don’t even understand.  Some of us have very medically fragile children and some have really health children.  Some kids are higher functioning while others are not.  Some of our kids will go on to live independently while others will never leave their parents home.  So, even in the “special needs community” we aren’t all on the same journey; making it a very lonely road for so many of us.

I have said many times that I wake up every morning and grieve.  I know that sounds strange, but it is a true statement.  I grieve the things Hannah is missing out on.  I grieve the things I am missing out on.  I grieve the loss of health for her and the loss of friends and fellowship for both of us.  I grieve the Down Syndrome, Autism and PANDAS diagnosis’ and I grieve another day of being prisoners trapped in our home.  Now, don’t get me wrong……I NEVER GRIEVE HANNAH AND THE CHOICE TO GIVE HER LIFE.  Let me be clear on that, but I do spend about 10 minutes every morning while I am still in bed grieving and preparing myself for the unknown 12 hours ahead of me.  I grieve the loneliness.  I rarely talk to anyone, unless I comment on a FB post and they respond…ha!  I have one friend who I talk to almost daily but that is it.  Most of my friends work or have such hectic, busy lives running their kids here and there and everywhere that just chatting on the phone is a rare treat for them as well.

My routine is even lonely.  It is the same thing every day as Hannah has to be on a strict schedule and routine just so she can function.  I have been criticized harshly for her routine but until anyone walks in my shoes they just don’t know.  I have learned a valuable lesson to just not care about the criticism from others.  My life and the way I raise Hannah is unlike most others with children.  Again, making it a very lonely road.

I spend most days ALONE…..yes, Hannah is always with me, but mentally and emotionally I am very much alone.  Any conversation with Hannah revolves around what she wants for breakfast, lunch, dinner and snacks (and even those answers are ALWAYS the same).  She has MANY repetitive phrases I hear over and over and over again (to the point my ears hurt from the same phrases and the tone of her voice….she has only one voice and it is LOUD, not to mention her octave is extremely high and painful to the ears).  As I type this my ears are ringing.

I don’t know why God has allowed this to be our journey.  I cannot wait to ask Him that either….HA!  I do know that I have learned a lot about myself, my strengths and weaknesses, my character and my work ethic in the last 11-1/2 years.  God has revealed Himself to me in ways I never would have known had I not walked this journey and I am sure I have a lot more to learn.  I have learned to be happy with ME.  That was always something I struggled with…..really low self-esteem until just a few years ago.  I needed to please people, be a doormat, never say no and I cared way too much about what others thought about me.  So, for those lessons learned, I am grateful.  Am I ready for a “break?”  Yep!  Will that break come?  I am not sure, but I know that no matter what, no matter how lonely it gets and no matter what the future holds I know I can continue persevering.  If I have learned nothing else I have learned that He carries me when I cannot take another step, He consoles me when I am sad or afraid, He comforts me in my despair and He is my friend when I am lonely.

For those of you walking a similar journey, know for certain you aren’t alone…..I promise you that!

Until next time………..

This Old Man

Old man…..not a very nice, polite or respectful term when talking about someone, especially your dad….but, you would have to know the relationship he and I share.  It is my term of endearment for him and he knows that.  Today, many, many, many, many moons ago this old man was born.  He is like 97 or something, I think…..hee, hee…..okay, 77 but it feels like 97 to most who know him.  What can I say about him…..I will try to be nice for once, and hey and I will use bullet points for those of you who are tired of my novels:

  • First and foremost he loves the Lord
  • Secondly, he loves my mom more than anyone or anything on this planet
  • Thirdly, he loves his cat Simon….yes, Simon comes before his kids….trust me on this.
  • Fourth, he loves Dennis…..yes, again, prior to his own flesh and blood!  HA!
  • Fifth, he loves his kids, Sharon and his grandkids, not necessarily in that order.
  • He loves cats
  • He loves his country
  • He loves cats
  • He loves his Pastor and his church
  • He loves cats
  • He loves his extended family and friends
  • He loves cats
  • He loves his job, yes he still works full-time and will never quit……they will have to fire him and even if they did he would still show up to work.
  • He loves cats
  • He loves helping people
  • He loves cats
  • He loves car shopping
  • He loves cats
  • He is so cheap, like Dennis, he will pinch a penny until Abraham Lincoln screams and then he will pinch it again
  • He loves cats
  • He loves mowing the lawn….that’s just plain weird
  • He loves cats
  • He loves to talk and he is very loud about it
  • He loves cats
  • He has never met a stranger
  • He loves cats
  • He is so far right-winged that he won’t eat the left-wing of a chicken
  • He loves cats
  • He loves guns
  • He loves cats

Okay, so you get the point…..he loves cats.  Most of the pictures I have of him he is holding a feline but he will tell you, “I hate cats….they are varmints.”  Yea, okay dad, whatever you say.

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This picture was taken on some island when they were on a cruise. He saw a cat walking around and picked it up. Told mom….”hey take a picture of me and the cat.”  

 

Dad and one of his Christmas presents! He loves Grumpy Cat....they have a lot in common! LOL!

 

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Duke and Dutch…..our cats growing up. Duke lived 18 years and Dutch lived 16 years. They were brothers and the sweetest cats EVER! When Dutch died, dad became a poet…..he wrote on Dutch’s cross that he used for his headstone. It read…..”Here lies Dutch, in the brains department there wasn’t much, when it came to lunch he ate a bunch until one day his kidney’s stopped and he couldn’t pee so we laid him here, can’t you see.”  I remember reading that and bawling my eyes out…..dad was so proud of himself!

 

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Carrying on a serious conversation with Simon, his current cat and best friend.

 

I will never forget this Christmas.....dad refused to have a family picture without Simon the cat in it!

I will never forget this Christmas…..dad refused to have a family picture without Simon the cat in it!  As you can see, Simon was thrilled!

 

Okay, I will try to be serious for a minute….just one minute though……

Jerry Stapp is loved by all who meet him.  He is full of personality, he can take a joke and dish it right back, he is always happy and is one to never fret or worry.  He has lived by several philosophies in life:

  1. “You never know what you can get unless you ask for it.”
  2. “No need to worry about anything that is out of your control.”
  3. “Don’t put the cart before the horse.”
  4. “Pray about everything.”
  5. “There is always something to smile about.”
  6. “It could always be worse.”
  7. “Save your money for a rainy day.”
  8. “Go ask your mama.”
  9. “Dennis, she is your problem now.”  Oh, wait that was when Dennis and I got married!  HA!

Oh, I could go on and on about this man but sometimes I think pictures speak a thousand words so here are a few of my favorites:

Boompa and Hannah

Boompa and Hannah

 

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Dad is not much of a dog person but he did love Henny!

 

One of my favorites!

 

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Oh that hair….on both mom and dad!

 

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We were poor! HA!

 

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Dad pretending to be a mix of Chuck Norris, Indiana Jones and Clint Eastwood…..Yeah, he took a .44 mag to kill a snake for our neighbor on his way to church! HA!

 

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Our wedding – 2001

 

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Dad does not discriminate againist animals and since Zira here (the snake) is in fact his only great-grandchild he held her. I have yet to meet Zira….as much as I adore my niece Megan…..I will shoot that snake if I ever see it. Eeeeeekkkkkk!

 

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Celebrating Dennis’ 20th year with the Sheriff’s Office

 

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This picture was contributed by Dennis……what is a heartfelt, sincere and loving blog post honoring this man without a picture of him sleeping?

 

Dad, I know you read my blogs….you and mom are 2 of my 3 readers and for that I am truly grateful.  As much as I pick on you and as much of a hard time I have given you the majority of my life I TRULY adore you.  You are one of my favorite people on the planet, the first man I ever loved and the one who truly holds my heart, always.  I will be honest……some days, the really hard days it is my daddy that I want.  You know why?  Because you have a perfect way of making me forget my troubles, and making me laugh.  Your laugh is infectious and there are days I just need to laugh and our banter back and forth provides that.  You are my hero (almost as much as Chuck Norris and Aunt Janie) and you know that is a pretty high rank!

Happy Birthday “Old Man.”  I hope we get to celebrate 77 or 97 more with you…..okay, I know that is pushing it but being that God isn’t quite ready for the noise and excitement you will bring to Heaven, I  might just get my wish!  Love you so much…..truly I do!

Until next time……….

Holiday Slump and The Whining Hour

Why is it that holidays of any sort cause some people more depression?  I call it the “holiday slump.”  I couldn’t even write this on the actual holiday yesterday….Valentine’s Day!  The day where florists make their yearly budget all in one day, candy gets sold by the tons and the words “I love you” get thrown around by everyone.  Yeah, not gonna lie…..not a fan of the holiday.  I didn’t marry a “romantic,” but I am not one either so I guess that serves us both well on days like yesterday.  We didn’t even exchange a card and he was out-of-town anyway at his aunts funeral.  I think we used to celebrate it, prior to Hannah but we haven’t since she was born, that I can recall.

Even though we don’t participate in some of these holidays I still get in the slump and I am not sure why.  I think part of my problem is seeing on Facebook and knowing others have a life outside of their home.  The dinners out, the Valentine’s parties at school, the kids exchanging Valentine cards, the gifts, etc.  All the things that Hannah can’t participate in and neither can I.  Heck, I have trouble finding a babysitter just for Dennis and me to go out once in a while.  I love the few babysitter’s I have that I trust and can’t hold it against them that they have lives to live and aren’t available to me 24/7….ha!  I am thankful for the times we get out to do something but I sure wish it could be more often.  I digress…..

I think yesterday was a slump of a day since Hannah and I were both so tired from her sleep study the night before…..you know the study where they watch you sleep but yet, you get about 5 hours less sleep than usual because they don’t even get started until 2 hours past your bedtime and wake you up 3 hours prior to your usual waking up time.  Not to mention, the sleep study clinic at Baptist Hospital is directly next to the railroad tracks where I counted 6 trains with loud horns that went by between 10pm-5am!  No joke…..crazy!  Yesterday was probably one of the longest days in a long time and we were both exhausted.  Hannah was having lots of tummy trouble, nauseous, lethargic, pale and clammy (today is the same).  So, all day yesterday and so far today other than throwing in a few loads of laundry I have just been sitting in her playroom with the Disney channel on TV and Hannah intermittently watching it, playing Barbie’s or reading some books.  I even got so bored yesterday that I got some rubber bands and fixed all her Barbie dolls hair in updo’s….all 25 of them!  LOL!

But, with all that whining now said, I am thankful for my dad who picked up Hannah’s Zofran prescription, some Chick-fil-a soup for Hannah and Outback for me.  That was yesterday’s blessing.  He knows steak makes me happy and it helped me get out of the slump slightly.

Dennis is on his way home (thank the Lord) and this coming up weekend is his 4-day weekend so I am looking forward to that; although Sunday will be awful around here.  I am trying not to dwell on the “clean-out” process Hannah will have to go through on Sunday and the all liquid diet to prepare for her GI testing (endoscopy and colonoscopy) on Monday…..ugh, so NOT looking forward to it for her or for us.  Hopefully after Monday, all the testing will be done for a while and we can prayerfully get some answers to some of these GI and sleep issues at least.

So, today’s blog post is brought to you by the letter “W” which stands for the word “WHINE.”  HA!  Sorry y’all today is just that kinda day.  For those of you who celebrated Valentine’s Day yesterday….I do hope you had a happy day full of love.  For the rest of us…..at least it is a year before it happens again!  HA!

Until next time……..

 

A Glimpse Into My Husband’s Heart

I might get scolded for this blog post, but it is the only way I can give you a glimpse into the heart of my Godly, loving, helpful and compassionate husband.  We both never dreamed this would be what our life would look like 15-1/2 years ago when we said “I do.”  When you discuss starting a family you don’t look at the things that could go wrong, you just have all these hopes and dreams for the family you are thinking about starting.  For us, those hopes and dreams were shattered 17 weeks into our pregnancy when we found out Hannah was going to have a chromosome abnormality, a congenital heart defect and other issues.

Fast-forward to the present and wow…..those issues we learned about at week 17 of our pregnancy pale in comparison to the past 3-1/2 years.  Those early issues seem unimportant now since PANDAS hit.  But, through it all I have watched my husband be a rock.  A Godly, unshakable, faithful, merciful and graceful ROCK!  Yes, I just used the word graceful to describe my husband!

Don’t get me wrong, he struggles……especially this past year with work issues, helping his sisters in caregiving for their parents and dealing with Hannah and me; he has struggled more this past year than the previous years but he always pulls his “bootstraps up” and plants his feet firmly on God’s word and his faith and carries on (sometimes carrying and dragging me along the way).

The past 6-8 weeks have been extremely difficult…..actually since right after Thanksgiving.  Hannah started having trouble going to sleep at night and having horrific insomnia, then this latest flare hit causing the rage, aggression, depression, OCD, anxiety, tics and seizures to come raging back in full force.  Then, out of nowhere the worsening of all her GI issues…..the lethargy, syncope episodes, nausea, constipation like I have never seen before (and trust me….after 4 years of awful constipation, it is worse now more than ever) and fatigue.  So, since November life has been nothing short of horrific!  We have had numerous doctor appointments and tons of testing (the month of February is nothing but testing for Hannah) which I am dreading!  March can’t get here soon enough!  Hannah’s depression and nausea has been so bad that I cannot leave her side for one minute throughout the day.  Like right now, I am sitting in her playroom with the laptop typing this.  If I walk out of the room she cries.  Needless to say, I am not able to get anything done.  Laundry is piling up, dishes are stacked in the sink, the bathrooms need cleaning and floors need to be done and dinner hasn’t been fixed; but here I sit.  If you know anything about me, you know all of that is driving me crazy!  Plus, I will even add that my only alone time is at night when Dennis and Hannah go to bed but I am in a really bad habit of staying up until midnight or after so the mornings are hard for me and I don’t roll out of bed until I hear Hannah (which is way later than I should sleep).  But, what have I woken up to the past few mornings?  I have woken up to laundry being caught up.  Yes, Dennis wakes up at 5am, goes for his walk, reads his Bible, drinks his coffee, watches Fox News and does laundry!  When he gets home from working all day, Hannah and I are usually sitting in the bathroom and after he scrounges around for something to eat and has his shower he takes my place in the bathroom with Hannah so I can just walk away for a few minutes.  The other night, I posted this on Facebook with a YouTube video attached of Chip Dorton singing Heaven.

Today has.been.difficult, but not just for me and Hannah for Dennis too. Let me give you a quick glimpse into my husband’s heart though for just a second; you see he won’t show you this or tell you what I will. I think it is because he is a man, a proud one and way more quiet and reserved than me, but I think it is important for other men to see this. Dennis is struggling, he won’t admit it, but he is…..there is a lot going on in his life, way more than anyone knows but you see…..his faith…..well, that keeps him grounded and gives him the ability to deal with life (in some ways better than me). People don’t know this but on an average day, Hannah spends 3 hours or more in the bathroom due to a lot of GI issues and when Hannah is in the bathroom one or both of us are too. Tonight, Dennis was in there with her and I had taken the trash to the street (a little reversal of chores there), but as I walked back in the house I heard this song playing. Dennis and Hannah were watching it but when I looked in, my husband was shedding tears…..big ones. Our faith, THAT is what gets us through the hard times and this song (sung by an amazing man, Chip Dorton, who passed away too young) is the reason we can keep going on. This song…..this, my friends is what we long for and how we know that it will all be okay in the end…..HEAVEN…..no more sickness, no more sorrow, no more pain, no more heartache….all gone for eternity. I long for it, Dennis longs for it and as we sat there on Hannah’s bathroom floor with tears streaming down our faces it reminded us that we have to press on because Heaven is our home and one day none of this that we are going through is going to matter! My husband, my best friend, my rock…..our faith, together knowing Heaven is our final destination, we can press on! Be blessed, my friends…….

I watched my husband that night and it literally broke my heart.  I have been on the receiving end of him doing and doing and doing for me not to mention all he does for Hannah and others.  I have watched him persevere in the most difficult of circumstances and never break.  Me on the other hand…..I break almost daily!  Yes, he has been sad and yes, he has been in a bad mood at times but he bounces back.  He still finds a reason to smile and laugh (and at times can even get me to laugh as well).  I don’t know if he knows how much I just watch him and how much his ability to function and persevere has motivated me to do the same.  The other night through my own tears I saw his tears….I got a glimpse of his heart….yes, the pain, the heartache but also the love, devotion, faith and compassion.

He is truly better at all of this than I am.  I find myself going through a myriad of emotions on a daily basis but Dennis…..well, he is pretty balanced (and if he isn’t then I don’t know about it and he hides it well).  I know he struggles…..he told me not too many weeks ago “Tam, this isn’t the way life was supposed to be.”  I know that day he was struggling but he snapped out of it and got through the sadness.  I admire that about him.  I struggle with sadness, probably have a little depression going on, yep….I just admitted that but Dennis……he is strong….mentally, physically, emotionally and spiritually…..much more than me.  It is that strength that I admire.  That strength that keeps him going and that strength that helps me carry on as well.

His heart……bigger than most men I know.  His compassion for his family and friends.  His love and devotion to God, family, friends and country.  His ability to press on in spite of the difficulties.  Does he struggle, yes.  Does he preserve, absolutely.  I am in awe of him.  I wish I could be more like him.  I wish I had the ability to be so compassionate, loving and strong.  A glimpse into his heart is a beautiful thing…..and I wish I possessed the heart he does.

 

Every night before bed Hannah reads these wooden crosses given to us when Designs From The HeArt gave Hannah a room makeover. Hannah reads them "Hope, Faith and Love" and then picks one up and reads the scripture of Jeremiah 29:11 on the back.....For I know the plans I have for you declares the Lord. Plans to prosper and not to harm you, to give you hope and a future."

Every night before bed Hannah reads these wooden crosses given to us when Designs From The HeArt gave Hannah a room makeover. Hannah reads them “Hope, Faith and Love” and then picks one up and wants Dennis to read the scripture of Jeremiah 29:11 on the back…..For I know the plans I have for you declares the Lord. Plans to prosper and not to harm you, to give you hope and a future.”  Our prayer and verse for Hannah.

 

You are the best husband and father I know Dennis......this smile on Hannah's face says it all.

You are the best husband and father I know Dennis……this smile on Hannah’s face says it all.

 

A great dad suffers through the movie Frozen 4,832 times!

A great dad suffers through the movie Frozen 4,832 times and even sings along!

Until next time……….

 

Brokenhearted Battlefield

Brokenhearted Battlefield, that is how I would describe our life right now.  Hannah is in one of the worst flares we have ever seen; a flare mixed with a plethora of  new health concerns does not make a good combination.  This past week (even up to this morning) has been one of the worst weeks we have ever seen in this 3-1/2 year journey.  From the beginning of the week someone “recommending” that we look into a living facility for Hannah to Hannah not being able to control her rage to doctor appointments that have resulted in February being a month of horrible testing…..well, it has left me brokenhearted on this battlefield we call life right now.

Fight, it is all I have done for Hannah since she was growing inside of me.  I fought doctors telling us abortion was our only option, then I fought insurance companies denying RSV shots and surgeries.  Then I fought doctors over things and now people thinking placing Hannah in a residential living facility at the age of 11 (cognitive age of 5) is a good idea.  The fight then continues behind our 4 walls as we watch Hannah declining mentally, emotionally, physically and behaviorally.  There are many times Dennis and I can only just look at each other…..sadness, tears and helplessness reflecting from our eyes.  I dread mornings when it all starts over again, yet I try so hard to start the day off with a smile and a positive attitude; I am thankful for each day but usually by 9am my smile turns to sadness and grief.

I find that I “preach” to myself often.  The “it could always be worse” speech or the “God won’t leave you nor forsake you” speech or the “God will equip you and carry you through this” speech.  I believe ALL those things, but focusing on them all day long is hard.  Often times I am scared, worried and frustrated and at times those feelings and emotions get the best of me.  Sometimes the battlefield we are fighting takes over and it is all I can do to just breathe.

The month of February is going to be a difficult one for Hannah.  We have 3 different days/nights of testing coming up at Wolfson’s Children’s Hospital.  Please, if you think of it, pray for Hannah on February 6th (tomorrow), February 13th and February 19th-20th (this one is more critical than the other 2, as it requires anesthesia).  It is all testing that needs to be done and I am thankful for doctors who are willing to do these tests but several of them will be hard on Hannah and frankly us too.

As always, we covet your prayers as we continue on this journey.  There are times Dennis and I say “this isn’t the way we thought life would be,” but I am pretty certain we aren’t the only people in this world who have said that.  My difficulties make me more aware of the silent struggles of so many people I know nothing about.  I think that is the reason I share so much; to let those of you struggling know you aren’t alone.  Our circumstances may be different but you aren’t alone in your own private brokenhearted battlefield.  If it weren’t for my faith in God, the promise of Heaven and the hope I have in Him alone, I don’t know that I would have made it this far……thankful for His promises and the fact that this world is not my home!  This season of life is but for a moment……I cling to that!

Until next time………