A Grateful Heart and Searching For Specialists

I will be the first to admit that I often times don’t have a grateful heart.  I allow the struggles and pressures of our life to weigh heavy on me and I squash the gratefulness way down deep in my heart and “forget” how blessed I really am.  The past month or so I have not been as grateful as I should be and Hannah of all people reminded me of that yesterday.

You see, she is struggling…..each moment is a different emotion or a physical problem.  She might be sad one minute, anxious the next and then manic or happy.  She might be nauseous, have a headache or tummy ache, she might be dizzy or about to pass out.  Each minute of every day lately has been something different…..things leaving us scratching our heads as to why.  No energy, lethargy and pallor are always there……our Pediatrician is working so hard to figure it all out but she needs a few of our Specialists to help her; which they are NOT doing.  In fact, last week we were told by our Immunologist that he could no longer help Hannah.  That she needed a doctor better equipped for her needs.  Now, I will admit when I first heard that I was angry that yet another doctor was pawning us off; but I should have had a heart of gratitude instead.  I should have thought “well at least he recognizes that he cannot help her and he is willing to admit that and help us see someone he thinks can help.”  You see though, I am skeptical of doctors…..we have some really great ones, but we have had a few really arrogant, bad ones (with major God complexes) and after 2-3 like that you get paranoid.  I question why some doctors refuse to help Hannah.  Is it because of the Press Ganey Score that they don’t want to mess up?  They want to keep their rate of success higher than their failures so they don’t want to take complex cases like Hannah on?  Is it because they truly just don’t care because Hannah has Down Syndrome?  Is it because they truly do believe that all of her issues are due to the fact that she has Down Syndrome?  Is it legit?  Should I just chalk all of her issues up to that extra chromosome?  Am I being unreasonable to think that there is a doctor out there that can help her?  Is it a fact that no matter what Specialist we see that we will continue to get the same answers of  “I am unequipped to help your child, you need to find a doctor who can.”  We have been told we now need to travel to see Immunology/Rheumatolgy, Genetics and most likely ANOTHER new Neurologist (that would be our 6th one).  We have been told to go to Atlanta, Miami, Tampa or Mayo in Rochester.  The plus side of Mayo is seeing all the doctors we need to see in one location.  If we go the other route, there will be 2 doctors in Atlanta and at least 1 perhaps 2 doctors in Miami (I have already ruled Tampa out).  The bad thing is no matter where we want to go or decide to go, our Pediatrician here has to send a referral letter on our behalf plus all the clinical notes to the Specialists.  The Specialists will then look over those and decide if they will see us.  So, the fact is we might not even get to see the doctors we choose because they might even tell us no.  So frustrating.  So hard.  So easy to be ungrateful and lose hope.

Yesterday Hannah was so appreciative of everything….she actually always is but I really took notice yesterday.  Everything I do for her she responds with “thank you so very much” or “Oh mommy thank you, I love you so much all my heart.”  I mean what kid does that after everything you do for them.  Every time I clean her bathroom I hear “thank you so much clean bathroom mommy, I love it.”  When I serve her a meal no matter what I serve she says “thank you I just love ________” (insert whatever she just ate).  I can buy her a new toy, book, article of clothing (even new panties) and she will say thank you and give me a big hug.  She truly has the most grateful heart of anyone I know and it puts me to shame.

I don’t say thank you like I should, especially to my Heavenly Father.  I should say “thank you for allowing these Specialists to see that they can’t help Hannah, please lead us to the ones who can.”  I should look at each closed-door as a blessing instead of another complication or burden.  I should be grateful for a doctor who “gives up on us” because that is another opportunity to find a doctor that can truly help us.  That is so hard though when you are so mentally, physically and emotionally exhausted.  I am just so tired…..everything has been a fight since Hannah was born.  But, what I am still trying to learn and get through my thick skull is that I only need to be still and let God fight for us.  I need to do my due diligence but allow God to bring the right doctors and Specialists into our life that can help Hannah.  I need to allow Him to work and perhaps if I have more of a grateful heart instead of an angry and sad heart, perhaps He could work better with that.  I am trying to have a heart change……it is so difficult when you have watched your child suffer for so long; but I know I have to change my attitude, shake off the bitterness that has built up and just let God do what He does best……fix my mess!  I know nothing in this world happens that He doesn’t allow.  I am a firm believer that things happen for a reason and perhaps everything we are going through is so God can reveal Himself in a BIG way to someone that needs Him.  I don’t know the reason but I know that I need a heart change…….it starts with gratefulness.

Give thanks with a grateful heart
Give thanks to the Holy One
Give thanks because He’s given Jesus Christ, His Son

Give thanks with a grateful heart
Give thanks to the Holy One
Give thanks because He’s given Jesus Christ, His Son

And now let the weak say, “I am strong”
Let the poor say, “I am rich
Because of what the Lord has done for us”

By:  Don Moen

Until next time…..

 

 

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I Miss You, My Friend

Dear Angie,

I sure do miss you.  I think about you daily but the past week or so I haven’t been able to get you off of my mind.  Perhaps it was because last Friday would have been your 45th birthday or because I knew school was starting back soon and I know you would have been going back to doing your favorite thing, with your favorite teacher friends; investing in the lives of so many blessed children who had you as a teacher.  Perhaps it is because I am struggling so much lately and I know all I had to do was pick up the phone and you would have been there with an encouraging word, God’s truth, a kick in my hiney (lovingly of course), a night out for dinner to chat…..you would have helped me understand my hurt and let it go.  You would have offered to help me with Hannah and you would have most assuredly stopped by Sonny’s BBQ and brought us dinner (you never failed to minister to us in that way).  You and I always had food readily accessible for each other.

But, instead I have to write you this letter in my blog that you will never see.  Is that dumb?  Perhaps most will think it is but I can’t communicate with you any other way.  When the Lord saw fit to take you home nearly 5 years ago it shattered my heart.  I lost my best friend of 40 years……40 years Ang…..how blessed was I?  I had you in my life for 40 years!  Some people never have friendships that last that long but we did and those are memories no one can ever take away from me.

Hannah isn’t doing very well right now.  Who knows, maybe you already know that.  My heart hurts.  I want more for her than this life she has been dealt and my heart breaks every.single.day.  Not to mention mean people and especially those who call themselves Christians.  Heck, if I weren’t a Christian I could see how people could be turned away because of the way people act.  Thankfully, that isn’t an issue as I know “Christianity” isn’t to blame, human nature (and the devil) are.

I pray for your family everyday.  You should see your kids Ang, they are doing so well.  Kaylee is so beautiful, kind and compassionate and the boys they are so full of personality and so very handsome.  Julie loves them Angie…..she truly does.  I don’t get to see your mom and dad, Wally or his family often but I pray for them all daily.  I know their hearts ache….I just know mine does so I cannot imagine their hurt and longing to see you.

Thank goodness for the hope we have in Christ…..I mean, one day there will be this grand reunion in Heaven and I sure do hope I get to be somewhere in the front of the line to hug your neck!  I have so much I want to tell you.  So much I wish I had told you before the Lord called you home.  I never really verbalized how much you meant to me.  I hope you knew.  I mean, I told you I loved you but if you only knew the times you literally saved me because you never held back and you always spoke to me with wisdom and love.  I will never forget the day I called you bawling my eyes out and told you Hannah was going to be “different.”  Your response to me was, “well we are all different but she is going to be special and God chose you.  Tamara, what an honor, what a privilege, that HE chose you out of everyone.  You get to mother one of His special children.  I am so proud of you and the mom you are going to be.”  Oh Angie, I remember that day and I remember those words…….geez, if you could see the tears streaming down my face right now…..I can hear your voice.  See, you are still there…..always will be; forever in my heart.

I just wanted you to know you were so greatly missed by me and so many other people.  I long for Heaven to see you!  Until then my friend……I just needed you to know you are loved and always missed.

Me, Misti and Angie…..dear friends!

 

Throwback to the early 90’s! Friends forever!

 

Left to right:
me, Angie, Whitney and Misti….love you girls!

Until next time………

 

An Island Unto Myself and Rise Up

So, I have been told by a few people that I am MIA…..it is true.  I have withdrawn the past couple of weeks to my safe place.  The place in my life where my defenses have sky-rocketed and my walls have been built due to the criticism from others.  But, what no one knows are the new medical issues that Hannah has been dealing with that Dennis and I wish to keep to ourselves right now.  There is so much going on that I cannot even process it all and frankly we have more questions than answers once again regarding Hannah’s health and it does no good to speculate or guess or try to explain all that is going on.  Let me just say we are dealing with her heart, kidneys and some sort of autoimmune issue/disease that we haven’t been able to pin point as of yet.  She is in the process of just this past Friday starting to wear a 30-day heart monitor and we have doctor appointments like crazy scheduled in the next 4-6 weeks.  So, as Dennis says, “we will hurry up and wait.”

For me, when I get overwhelmed like this and due to the harsh criticism I have received from people, I tend to shut down, build my walls and isolate myself.  So, for those who are wondering that is the place I am in right now.  No one understands and frankly I don’t expect people to.  Am I angry?  Yes, I am.  Do I wish things were different for my little girl?  Absolutely!  Am I scared?  Yep, more than I can  put into words.  I am feeling so many different emotions including, sadness, worry, anxiety, anger, resentment….yep, feeling it all.  But, you know what…..I am woman enough to say it, own it and work on it.  Instead of sitting there pointing fingers and criticizing others I am working on me.  I am not blaming others for my challenges.  I am not telling others how they should handle their problems and I am not making other people’s problems and issues about me.  Am I perfect…NO!  I have never claimed to be.  What I am is a mom who would give her life to save her child or spare her any more pain/surgery/heartache/anxiety/fear…..I cannot fix this and that is hard!

From the moment Hannah was conceived she was sick.  From 3 open-heart surgeries, immune deficiency, PANDAS (which lets be honest literally has sucked the life out of my family), T-cell deficiency, low vitamins, minerals and electrolytes, seizures, lethargy, syncope episodes, malabsorption issues, gastritis, anemia, hypothyroidism, oh geez, I could keep typing her list of diagnosis’ all freaking day long.  The point is this…..life has been HARD and if you think for one single moment that you can do this better than me, then I extend you the offer to come and try.  Come walk one dang day in my shoes and see if you can handle it.  If you can, then criticize away.  I am so sick and tired of people who have NO clue what my little girl, my husband or I have gone through thinking that they can say or do anything and get away with it.  Call me negative, call me selfish, call me any name in the book but until  you have walked one single day in my shoes……you and your opinions hold NO weight with me!  I am sitting here typing this and it just hit me……I have allowed a few people to make me create this island unto myself.  I have allowed people and their opinions of me and my parenting skills (or lack thereof, in their words) force me into building walls and predominately staying off of social media to protect myself from anymore hurt.  I have enough stress and hurt in my life (that truly matters) than to allow one more person to try to tear me down and destroy me.

I knew this would happen…..I have fought sitting down and typing my thoughts because I knew I would explode.  This has built up in me for over 2 weeks now.  Of course, it is Sunday and it is my most dreaded day of the week so here we are.  Right now, my ONLY concern is Hannah and taking care of her, figuring out what is going on in her little body and praying like I have never prayed before for conclusive testing, doctors’ wisdom, medical guidance and direction and answers to all the issues happening now.  So, for me to spend one more moment on the “opinions of others” is counter-productive for me.  If you wonder where I am, I am taking care of Hannah.  Again, when we have more conclusive answers I will share more, but until then, please just pray for us….for her.  If you want to offer hope and encouragement, I welcome it.  If you want to criticize, keep it to yourself…….

This song has become one of my favorites the past couple of weeks……Rise Up by Andra Day.  Here are the lyrics (of course if you go to YouTube and listen to it, her voice is amazing):

You’re broken down and tired
Of living life on a merry-go-round
And you can’t find the fighter
But I see it in you so we gonna walk it out
And move mountains
We gonna walk it out
And move mountains

And I’ll rise up
I’ll rise like the day
I’ll rise up
I’ll rise unafraid
I’ll rise up
And I’ll do it a thousand times again
And I’ll rise up
High like the waves
I’ll rise up
In spite of the ache
I’ll rise up
And I’ll do it a thousands times again
For you

When the silence isn’t quiet
And it feels like it’s getting hard to breathe
And I know you feel like dying
But I promise we’ll take the world to its feet
And move mountains
We gonna walk it out
And move mountains
And I’ll rise up
I’ll rise like the day
I’ll rise up
I’ll rise unafraid
I’ll rise up
And I’ll do it a thousand times again
For you

All we need, all we need is hope
And for that we have each other
And for that we have each other
We will rise
We will rise
We’ll rise, ohh ohhh
We’ll rise

I’ll rise up
Rise like the day
I’ll rise up
In spite of the ache
I will rise a thousand times again
And we’ll rise up
Rise like the waves
We’ll rise up
In spite of the ache
We’ll rise up
And we’ll do it a thousands times again
For you

So, with that said, I will rise up; I will rise up unafraid and in spite of the ache and I will do it a thousand plus times again.  You can knock me down but getting back up is my specialty……so, for those wondering…..right now I am focusing on Hannah; my heart, my love, my priority.

On a positive note……Vasayo is still our “miracle” and Hannah is sleeping 12-13 hours each night and as far as her PANDAS symptoms she is so very much improved!  I am thanking God for that…..He brought Vasayo into our life knowing we would be able to use it and have some relief from the horrific insomnia and other PANDAS symptoms knowing full well we would be walking this new complicated medical journey with Hannah.  So, I give God the glory for Vasayo, our Vasayo family, our products and yes, I am still in the business…….just prioritizing Hannah first…..as I ALWAYS have and will ALWAYS do.

Until next time……..