Busy, Busy, Busy

Oh my…….this is unusual for me to go so long between blog posts but we are busy, busy, busy around here.  I will fill more details in as soon as things settle down but this is just a quick “hello” and update.

I have so many people asking about Hannah so here is the latest:  We go Monday to see the Orthopedic doctor for her to get fitted for her brace.  This brace from what I hear is made of thick plastic and foam and will go from under her armpits to her hips.  I believe it will be like a corset and most likely velcro in the back.  She will wear it under her clothes…..maybe I should reword that…..she is supposed to wear it under her clothes; not quite sure she will even wear it!  For the brace to be effective and prayerfully stop the curvature from getting worse, she needs to wear the brace 12 hours each day.  So, we will put it on when she gets up and take it off at bedtime.  I am pretty sure there is no way she would sleep with it on and sleep is our most important thing!  So, wearing it during the day is the only option.  The doctor warned us that anything less than 8 hours each day is pointless and even wearing it 12 hours each day might not work.  So, it will be a wait and see game.  The doctor will monitor her every 3-4 months with x-rays to see if the curve has stopped or still progressing.  Surgery  (which I cannot even wrap my head around right now because it consists of placing metal rods and screws in her back), will be discussed if the curve hits 50 degrees.  Right now it is about 35 degrees.  So, our biggest prayer request is that Hannah wears the brace and that it will work.  I have been talking a lot about it to her and she knows that she is going to get one, but wearing it, I am afraid will be a whole different ball game for her.  Your prayers are greatly appreciated.

On the PANDAS front we are still fighting that battle and we actually have an appointment with another new Neurologist in April.  He is at Children’s Hospital at UAB in Birmingham.  He has been doing a lot of research on PANDAS and we were able to get in to see him.  We have had this appointment with him for 4 months now…..his waiting list is LONG!  Anyway, he is a wonderful Pediatric Neurologist and is willing to see Hannah so we are going to travel to Birmingham in April to see him…..hopefully he will be able to give Dr. Kim (our Pediatrician) some recommendations for her to follow.  We pray that one day this PANDAS journey will be over.  I never in a million years would have thought that a strep infection could do this amount of damage to my child’s brain.  It has been and continues to be a horrific journey.  I would love for a cure to be found that would bring back the little girl who I had prior to September 2013 when all the infections started and then in March 2014 when PANDAS hit like a vengeance!

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So, that is the update for now….it is short because my time is so limited for the next few weeks.  Lots of BIG changes happening for our family….good ones and I will reveal more when I have time to really sit down, think clearly (my mind feels like a computer that has 2,365 tabs open all at once) and explain all that has happened since December.  Until then, we continue to covet your prayers!

This could seriously be a "selfie" of me right now! LOL!

This could seriously be a “selfie” of me right now! LOL!

 

Until next time……….

 

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Processing the Diagnosis and Moving Forward

I think I have finally processed Hannah’s new diagnosis from the doctor last Tuesday and now I am ready to accept it and move forward the best we can.  Not sure I will ever embrace any of Hannah’s diagnosis’ but we have no choice but to accept them and do what needs to be done.

I never want my blog posts to come across as “complaining.”  I know that at times it may seem like that but I am truly just venting.  I am very aware of people and the struggles of so many.  None of us are without tribulation, struggles or difficulties in our lives.  We do however, handle them all differently.  Some choose silence; wanting to go through their problems in secrecy.  Others, like me want to share because it is good therapy for me and prayerfully it will help someone else that might have similar struggles to know they aren’t alone.  Neither is wrong.  If it is right for you, that is all that matters.  I do, however want to make something very clear…..I am not complaining.  If Hannah continues to receive diagnosis after diagnosis and never gets a break from her medical issues then I will continue to do everything in my power to give her the best life I can.  I will sacrifice and never feel sorry for myself.  I may feel sorry for Hannah, but none of Hannah’s medical issues gives me any reason to feel sorry for myself.  I do hate that my little girl has had to endure and continues to have to endure so much but I will always count it a joy and an honor to care for her.  You see, I have family members and friends who would do ANYTHING to have one more moment with their child who has passed away or just one moment to have had a child they have so longed for their entire life.  I “see” those people and even though I have never felt that heartache of having lost a child or never been able to have one; I am aware there are so many out there who feel those heartaches every.single.day.  I never want to “complain” or let anyone think that I wouldn’t choose to do what I do each day.

Dennis and I made a choice over 10 1/2 years ago to try to have a family and God gave us a very special little girl.  Looking back when we made that decision did I think that this would be my life today?  ABSOLUTELY NOT!  But, would I change it……ABSOLUTELY NOT.  Why?  Because Hannah was part of God’s plan for our life.  He knew that no matter what life threw our way or Hannah’s way; even though our faith would be tested, we would cling to Him and do our very best to honor Him throughout this journey.  THAT is my ONLY prayer through this, that He will be glorified and that no matter what has come and what will come that we will point others to Him; whether through our heartaches, our joys, our trials, our victories or our sorrows.

We were not placed here on this earth to lead perfect, easy, always fulfilling, always balanced, no-issues-whatsoever lives.  We were put on this earth to live the life that we were given.  Things happen.  Circumstances occur and there is nobody or nothing that can change that.  We just have to live the best life we can, with what we have.  I am blessed.  I have a husband who truly adores me (and only God knows why).  I have a home, a car, there is money in the bank to put food on the table and clothes on our backs…..and let’s not forget the shoes on our feet!  If anyone knows me, they know I have a major shoe obsession!  HA!  I may be “stuck” inside day in and day out.  I may deal with a roller coaster of emotions from Hannah on a daily basis.  I may get cabin fever every so often and miss going and doing things with friends and family.  But, you know what……it is where we are in this season and I am okay with that and I will do it for as long as I have to because I know there are people out there, if given the opportunity, would gladly change places with me just to have a child or have the one back they lost.

So, for those of you who have loved and lost or have never had the chance to love……you are loved.  I want  you to know that I see you.  I want you to know that my heart hurts for you.  I want you to know that I don’t understand your hurt but I do understand and know the God of all comfort.  I do know the God that gives us a peace that passes all understanding and I do know that He loves you just like He loves me.  Our circumstances are so very different but I think of you and pray for you and when I am walking through the really difficult times with Hannah…..YOU make me know that I need to count this all joy and remember that it could all be gone tomorrow and I need to be grateful for each and everyday no matter what!

So with that said, I have processed the scoliosis diagnosis and now we move forward.  We accept the things we cannot change and as I told someone last week…..I have a feeling that no matter what, Hannah will handle this like she does everything else……better than me!

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Until next time……….

 

Can’t Catch A Break

I am sitting here writing while emotional.  Maybe I shouldn’t write until I gain control and can truly put my thoughts and heart into words, but I needed an outlet and this is it.  It is difficult to express my heart and thoughts when I am in a mixture of anger, sadness, grief and questioning why so much, but I will try.

We had an appointment today at Nemours.  We have had this appointment scheduled for 4 months and we knew going in that this could show us something we didn’t want to know as far as a new diagnosis with Hannah.  We knew going in today at least, that with one x-ray we would have answers, but in all honesty I didn’t expect it to be too bad.  Let me go back……

When we went to Georgia in December to spend a week with my 2nd family, the Garrison’s and Holman’s, my friend Michelle noticed as she was rubbing Hannah’s back that the upper right side of her back was “swollen.”  I had never noticed it.  My friend Tammy (Michelle’s sister) is a nurse and looked at it commenting that it looked like it could be Scoliosis.  So, when we got home I made an appointment with our Pediatrician and she looked at it and thought it best to send us to Orthopedics.  Well, today was our appointment.

We really liked the doctor.  We had never met him before and of course he acknowledged just by looking at Hannah’s chart that we had a lot going on and you could tell it pained him to add to that.  After doing an x-ray of Hannah’s spine and hand (the left hand/wrist shows growth plates which can tell a doctor how much more growing there is still to come in a child); he told us Hannah had a significant case of scoliosis.  Of course, once he showed Dennis and me the x-ray, I didn’t need a doctor to tell me that.  Hannah has a 30%+ curvature in her spine that has also caused her shoulders and hips to be off-set pretty significantly.  I know scoliosis is not something that is life-threatening; although it could be life-altering depending on how bad it gets.  Unfortunately for Hannah she still has a lot of growing to do, which is bad because the spine will continue to curve unless we do something preventative right now.  So, Hannah will start wearing a brace…..a hard plastic and foam brace under her clothes.  She needs to wear it at least 12 hours a day, if not more.  Problem is, I am not sure she will wear it for 12 seconds much less 12 hours.  The other downside to the brace is it does not fix the curve that is already there and it might not keep the curve from getting worse, but at this time we have to try to stop the curve from worsening.

You see, this is where my anger and grief come into play……she can’t catch a break.  Born with Down Syndrome and a congenital heart defect she has had 3 open-heart surgeries.  She also is Hypothyroid, anemic, has a seizure disorder, low immunity and let’s not forget the dreaded PANDAS (which by the way, our Orthopedic doctor pleasantly surprised us by saying he believes in and has another patient with it as well).  Dennis and I sat there and all we could say is, “she just can’t catch a break.”  We get through one diagnosis, to be hit with another one, then another one, then another one and then we don’t even get past the PANDAS hell before this strikes.  I know in my heart it could be worse……I mean cancer, leukemia, diabetes, MS, ALS…..there are worse things out there and I am trying so hard to remind myself of that.  Knowing that AT LEAST we aren’t dealing with something like one of those things, but WHY???  Why can’t she just catch a break and not get any other diagnosis’?  It breaks my heart as her mom to watch her go through her already difficult life and now get something else thrown at her.  I know God knew about this and I know in my heart He has a perfect plan for all we go through and for Hannah’s life but my mama heart and my sweet husband’s heart was shattered again today.

I am going to be honest here……he might kill me for saying this, but I watched my husband sit there as the doctor talked to us and showed us the x-ray.  I watched the tears well up in his eyes (even though he was fighting them back with all he had) and I knew what he was thinking…..”give me a hammer, give me a screwdriver…..let me fix it…..”  You see men are “fixers” and when it comes to their little girls and they cannot fix whatever the problem is, it feels as if their hearts have been ripped out of their chests.  Then, I saw the tears start to fall and of course then mine started.  The doctor and the PA were so kind and empathetic….even handed Dennis a kleenex.  He tried to be positive and again I know this isn’t the end of the world but oh my…..we have watched our daughter literally go from one diagnosis to another her entire life…..the past 10 1/2 years has been a roller coaster of one medical issue after another and it wears you out mentally, emotionally, physically and yes….even spiritually!

I wrote in a blog just this past week that I want to live in faith, not fear.  Fear is crippling and it steals your joy.  Faith is what we cling to and I want to live that faith out……I can’t do that while living in fear; but when it comes to your child that is so difficult.  My faith is strong and I know beyond a shadow of a doubt that God will carry us and Hannah through this new journey……but today, this second, I am asking why and wishing that my sweet little girl could catch a break and live life to its fullest instead of existing through diagnosis after diagnosis.  Life feels completely unfair again right now and even though I know she will persevere I just hate that she has to.  I hate that she has had to fight her entire life to just survive.  I hate that she can’t just live a life without disease, pain and hardships.  Right now I am angry…..right now I am sad…..right now I want a miracle…..right now I long for Heaven….right now I am weary….right now I pray that no matter what, we will find a way to Praise the Lord though this suffering and find a way to live in faith not in fear!  If you think about it, please say a prayer for Hannah as she faces yet another difficult journey.

Until next time……….

Friendship

Friends……the people in your life you can be totally real and authentic with…..the good, the bad and the ugly side of yourself without feeling judgment.  The people who you laugh with and at and as Pete the Cat says….”and it is all good.”  Those people who know you inside and out; whether you have been friends your whole life or just for a short period of time.  Those people who are always there, no matter what; day or night and even if you go awhile without talking you pick up right where you left off the next time you do.

I have thought a lot about friends lately and how difficult life would be without them.  I have “looked” at my friendships and I am so very grateful for each and every one of them.  From the life-long friendships to the long-distance ones.  The older friends and the younger ones and the more recently acquired ones….they are all special; each in their own way.  I am so thankful for lasting, good, solid friendships but it has hit me just recently how I have failed my friends because I haven’t had the time nor taken the time to cultivate them and spend time listening and caring about them like some have for me.

Friendship, just like all the things in our life take work.  We have to spend time giving to our friends, reaching out, listening, hearing (yes, there is a big difference between listening and really hearing our friends; what they say and the needs in their lives).  I have failed the last 10+ years really working on my friendships.  This goes back to finding balance in our lives and I am not really good at that, but I am trying to be better.  I can’t use Hannah as my excuse, although I do most of the time.  Yes, it is challenging to find the time and energy to do things for and with my friends and I have to wait until Dennis is available to care for her so I can do things with them.  But, there are things I can do.  I know people really don’t have time to chat on the phone, so I could text just to let my friends know I am thinking of them.  Sending “snail” mail (I mean that is truly a lost art) or sending messages via Facebook are other ways I can keep in touch and reach out.  Putting a gift card in the mail just to say “you are loved and thought of” is another thing I could do every now and then.  Of course, praying for my friends, which I do, is always the best thing I can ever do for anyone.  Just so my Non-Christian friends know, I pray for you too!

Friendship is so important……those people who walk through the valley or high on the mountaintop with you…..they are God’s way of surrounding you with love, companionship and loyalty.  When I look at my friends I see that……love, companionship, loyalty, honesty and trust!  I have friends who don’t live anywhere near me, in fact my dearest friend lives in the Atlanta area.  I have dear friends I have never met face-to-face because I have met them on Facebook.  They are all over…..Nashville, New York City, Arkansas, Alabama, California, Texas and other places.  I have my lifelong friends; those I grew up with from birth, elementary school, high school and after.  Those friends who I met after Dennis and I got married, through different jobs and of course when this journey with Hannah began.  I have friends older than me, my age and younger.  As I type this I am thinking of so many of my friends in each group and I realize just how truly blessed I am.  I have those “unexpected” friends, the ones you never thought you would ever call “friend” but they reached out and have been some of the biggest blessings in my life.  I have friends with kids and without.  Friends who are married and some that aren’t.  I have friends who are walking this journey of PANDAS and others who are walking the Down Syndrome journey; not to mention the ones who are walking the heart disease journey as well.  So many sweet, precious friends who God has blessed me with.  Some who have come alongside of me, one in particular who I talk to just about everyday who is my confidant……that one person, besides Dennis who I tell everything to.  So very thankful for her….so many times she has been my rock.

I have thought so much about the people God puts in our life to walk life’s journey with us…..what a gift, what a blessing, what a joy to have friends.  You might have one friend or 500 of them; but the fact is we need to be thankful for them and thank the Lord for the gift of friendship.  We need the balance in our life; I am certainly trying to find it more and more.  The balance of God, family, friends……in my opinion the 3 top relationships in all of our lives.  I am working on being a better friend…..it takes dedication and work; much like our relationship with God, our spouses (or significant others), our children and our careers.  But, the time and effort  you invest in your friendships are so very worth what you reap because of it.  Take a minute today to touch base with a friend and let them know how grateful you are to have them in your life……

This cracked me up!

This cracked me up!

 

So true in my life~HA!

So true in my life~HA!

Until next time……..

 

MIA and Tell Your Heart To Beat Again

Holy cow…..I don’t think I have ever gone this long without blogging but I seriously have had no time whatsoever to sit down, much less at the computer for any period of time.  I will be missing in action for the next month or two and only checking in occasionally.  We have so much going on right now and I am seriously going non-stop from 7am until 11pm most days.  Once we get through the next 45-60 days I will resume my normal amount of blogging….don’t dismay!  HA!  Heck, y’all are probably thankful for a little break from my ramblings.

This won’t be a long post as I just don’t have time.  But, I heard a new song last week (or the week before, I can’t remember) that spoke to  my heart.  It is from Danny Gokey and is entitled “Tell Your Heart To Beat Again.”  It is such a beautiful and tear-jerking song.  I encourage you to google it and take a listen.  I love the part in the song where it says…..”yesterday’s a closing door….you don’t live there anymore…..say goodbye to where you’ve been and tell your heart to beat again.”  I am so guilty of living in my yesterday’s and not my present.  I am so guilty of allowing FEAR to control me, instead of FAITH.  I am working diligently on relying on my faith instead of my fear.  Fear steals your joy.  Fear steals your ability to move forward.  Fear steals your future and it robs you of your faith until all you have to lean on is that fear.  It is crippling and destructive.  Once you are living constantly in fear though, getting out of that and learning to live again is not an easy task.  You have to make a conscience decision each and every day to say goodbye to where you have been and tell your heart to beat again…..so, I am working on that.  It is a work in progress and although I know I will fail on some days; one day I will be ready to live.  One day, we will find that balance we are so desperately searching for in spite of Hannah’s illness and one day, with God’s help, we will learn to live again even if that means living through illness and difficulties.  My goal for this year is for Dennis, Hannah and me to find a way to do what this song says…….

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Until next time……..

Single Parents

Single parents, you are on my mind today!  I don’t know how you do it day in and day out.  You work and take care of your children and home.  So many of you do it ALL alone; with little to no financial assistance or help.  I don’t care if you are single due to losing a spouse or divorce; whatever the case may be I want you to know that I stand in awe of you today.

I don’t have to do the “single parent” life often but when I do it makes me so much more aware of you.  The struggles, the loneliness; doing it all with no one to share in the pain, grief, joys, or sorrows.  You get your children off to school or daycare, work all day, come home just to help with homework, fix and eat dinner, do the nighttime routines just to get them in bed  (much later than you would probably wish for) and then do it all over again the next day and the days following that.  Not to mention keeping your home clean, grocery shopping and what I call “Target” shopping for all those other essentials.  Let’s not even talk about the many loads of laundry you probably do each weekend!  I stand in awe of you today and I wanted you to know that someone recognizes the sacrifice you make and yet I am sure I have no clue just what the single parenting life entails.  I just get little bits and pieces when I get thrown into it for a few weeks out of the year and it sucks.

I am doing the single parent thing right now and last night when I got Hannah to bed I was more exhausted than usual.  It isn’t until I have to do it all 24/7 that I realize just how much Dennis contributes when he is home.  Yes, financially but also physically,  emotionally and mentally.  I realize just how blessed I am that he does so much to help when he is home in the evenings.

I am working on myself and trying to find the blessings in life instead of all the sorrows.  I tend to take so much for granted; I have most of  my life and I am trying to see the “silver linings” instead of just the clouds.  I have always been grateful these past 10 years that I don’t have to work outside my home.  That is a blessing that I never want to take for granted as I know so many women who would trade anything to be home with their children.  I want to be very cognitive and aware of that gift; because it truly is just that; a precious gift.  I know my situation is different from most.  If Hannah had been born typically developed I probably would have gone back to work; but God had other plans and made the way for me to stay home; not without sacrifices mind you!  We lost a huge chunk of our income and we wondered many times how we would manage but God was and still is faithful.  Even though our situation is unique, I know it is something I need to be very thankful for.  I do stand in awe of the mom who works outside the home and still finds a way to do it all……you are truly Superwoman!  I guess you just do what you have to do; even though I am sure there are days you wish you didn’t have to.

Then, there is the single parent (I use “parent” because I know mom’s and dad’s who do it…..it is not just about women as I know many men who are in the single-parenting life 100%) who does it all and so much more…….my hat is off to you and I admire you!  Again, I just have a tiny glimpse of your life and I pray that I never have to experience it like you do each and every day with no end in sight.

You are just on my heart today and even though I can’t do anything to help you and these are just words in a blog, I am praying for so many of you today because that is one thing I can do.  I just wanted you to know that you are recognized, admired and never forgotten!

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Until next time……..