Maybe I Should Remain Silent On 3/21

Struggling today…..perhaps I should keep it to myself; but my heart just aches.

I went to bed last night knowing that today was going to be World Down Syndrome Day; 3/21 (a day recognized for celebrating individuals with three copies of the 21st chromosome).

I knew I would wake up this morning with everyone celebrating Down Syndrome; which I totally believe should be celebrated.  I think these amazing people should be celebrated daily but being raw and honest here; sometimes a disability is difficult to celebrate.  Awareness is being brought to people with Down Syndrome one day a year but the remaining 364 days a year are a fight for so many of us.  We fight for acceptance.  We fight for normalcy.  We fight for services.  We fight for a plethora of medical issues and insurance coverage.  We fight ignorance.  We fight….all day long…..and at times we get very weary.  Now, with that said, I know some people who have kids with Down Syndrome and they don’t have the same issues.  Some of our special kids don’t have the plethora of medical issues that Hannah does (and I am so thankful for that for them).  So many kids with Down Syndrome are in school, doing fabulously, working, and making their mark on the world.  But, there are some of us where that isn’t a reality; where the differences between our child with Down Syndrome and a typically developed child are VERY different.  The slogan for World Down Syndrome Day is “More Alike Than Different.”  I get it; I truly do but there are days (often times) where I don’t see that.  I see the vast differences and I grieve those.

I think I see the differences more now than ever.  As Hannah gets older I see what other kids her age are doing and what she still cannot do.  I grieve the fact that I will never have that friendship with her that so many other moms have with their kids as they get older.  We won’t be going to see movies, getting manicures and pedicures and we won’t be going shopping together.  We won’t be taking family vacations to fun spots….heck, for the past 4  years we haven’t even been able to take her out to dinner.  I am still bathing her and taking her to the potty.  I am still reading books before bed, tucking her in, saying her prayers and standing there as she falls to sleep.  I know that our circumstances are much different from most; even our sweet friends who have kids with Down Syndrome.  We are in a very rare category with PANDAS, Autism and Hannah being so immune compromised.  Heck, we are even in the less than 1% of kids with her heart defect that have had 3 open-heart surgeries.  Most kids with her heart defect only have 1 open heart surgery.  So, you see, things are a little more different for us than the “typical” chid with Down Syndrome.  So, my grief and heartache is quite a bit different from most.

I hesitate even posting this blog post.  I mean, it sounds like I don’t appreciate what this day means for all kids with Down Syndrome.  I do, I promise I do.  It is a step in acceptance, a step in spreading knowledge and a step in the right direction.  I look at Hannah and even though I do see ALL the differences (and there are a lot of them) I also see my greatest gift and biggest blessing.  I never dreamed a little baby with Down Syndrome could teach me so much.  I never imagined as she grew up she would still be teaching me about life, what is important and how to reach deep down and find strength and perseverance you never knew you possessed.  Even through my heartache and grief I can still see purpose and find joy.  I can still find things to be thankful for…..they might not be the things most moms are thankful for but I have many.

Today, I will celebrate Hannah and all kids with Down Syndrome; I might do it through my tears but I am grateful.  I am grateful I was chosen to be Hannah’s mom even though it wasn’t the journey I expected.  I am grateful God has taught me so much through her; lessons I probably never would have learned without her.  Yes, it took a child with Down Syndrome to knock me down from my self-righteous, selfish, materialistic pedestal (trust me on that) to show me life was about so much more.  Life is about caring for people.  Life is about loving people; even those very different from you.  Life is about doing all you can to point others to Jesus.  Life is about EVERYTHING except yourself.  Life is about taking baby steps, finding your journey and embracing it (that has been the hardest part for me).  Life is about so much more than any book, education or job could ever teach you.  No amount of money, big house, nice car, dream job or higher education could show you the real meaning of life.  Those are just things/possessions…….life is about caring, love, loss, grief, finding joy in your sorrow and purpose in your pain and sharing that with others.  Life……the important part all taught to me by a little girl who possesses an extra 21st chromosome.  So, because of her, even through my grief and sadness I will celebrate; because you see, Hannah is worth celebrating today and every day……

Until next time…….

Eye Opening

I was raised in a Christian home.  A home where we were encouraged to read our Bible and memorize scripture.  I can still quote many verses from the Bible to this day.  I can even quote some chapters of the Bible.  But, it is amazing how each time I pick up the Bible to read it, I can always learn something new.  Perhaps it is something I have never read or it is something that didn’t have much meaning to me when I read it in the past.  Yesterday was a bad day.  I was emotionally, mentally, physically and spiritually drained.  I have so much on my heart and mind and feelings I cannot shake, concerns I cannot rid my mind of and an overall sense of just plain grief.

I was so depleted feeling, I finally just picked up my Bible and opened it up.  I was half paying attention to what I read and half not when I stumbled across this passage…..I reread it about 10 times for it to sink in.

John 9:1-3 New International Version (NIV)

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.

Did I read that right?  I read it over and over again…..yes, I read that right…..Neither this man nor his parents sinned…..this happened so that the works of God might be displayed in him.  WOW… for all those nincompoop’s who have told me in the past that Hannah’s suffering is due to sin in my own life….well, here ya go!  This scripture gave me hope.  Hope that nothing we are going through is for any reason other than for the works of God to be displayed.  I can live with that.  I can find comfort in that and that gives me peace and hope.  I am still sad.  I am still going to grieve the “what might have been’s” but I can press on knowing that God is using our situation and will use it to show others how gracious, merciful, loving and kind He is.  I pray for a miracle daily for Hannah.  Will I see that miracle happen….YES I WILL!  Will it be an earthly healing or a Heavenly one?  I don’t know the answer to that but healing will come.  Our miracle for Hannah will happen and I can press on regardless of the outcome because I know God’s works will be displayed in her!  What an amazing peace that came over me last night when I read this.  Thank you Lord for your words of comfort and peace.

Until next time……..

Murphy’s Law

Murphy’s law is an adage or epigram that is typically stated as: “Anything that can go wrong will go wrong”. Wikipedia

We have all heard the adage Murphy’s Law and have used it at least once in our life……seems like we use it A LOT around here.  This has definitely been one of those weeks.

Hannah has been an emotional basket case this week…..tears, tears and more tears  Our refrigerator (not even 2 years old) started the week out making a weird grinding noise.  Then, Tuesday Hannah had a 2 hour-long Cardiologist appointment which ended up putting her on medication #14.  Then, after that doctor appointment we came home and I decided to do another load of laundry trying to catch up on the piles in the laundry room and lo and behold our washer just decided to die….it was purchased May of 2014!  Why don’t they make things like they used to?  My parents refrigerator lasted them 28 years and we have already called twice on ours that we purchased less than 2 years ago!  Crazy.  So, last night I went to Lowe’s and bought a new washer and dryer (our dryer is on death’s doorstep as well).  Oh and to top it all off I am rethinking IVIG AGAIN; not necessarily not doing it but where to do it  UGH!  Our Cardiologist brought up a good point and I am working on getting IVIG done here in Jacksonville at Wolfson’s instead of traveling to Gainesville but I am having trouble getting our doctor in Gainesville to call me back.  If he doesn’t return my call soon I will be canceling our scheduled infusion and trying to get it done here.  There is NO reason whatsoever that it cannot be done here and I am gearing up to fight for that.  Traveling to and from Gainesville every 28 days does not seem that difficult to most people but for us with Hannah it is quite a difficult task.  Hannah doesn’t like to drive 10 minutes to Chick-fil-a much less an hour and 45 minutes to the hospital.  Her anxiety will be off the chain and it will put undo stress on her heart and her behavior and demeanor will reflect that stress something awful.  Then 8-9 hours sitting in the infusion center and then the drive home will be torture for us all.  Plus, not to mention doing this monthly for an indefinite period of time WITHOUT Dennis as he cannot take off each time to go with us.  So……fight again I must (that kind of sounded like Yoda, didn’t it)….I am cracking myself up today!  Better to laugh than to cry.

But, I truly didn’t start this blog post to complain.  This week I have been thankful even with Murphy’s law in full swing around here.  You see, we have had several blessings.

  • Our sweet friend Sarah sent Hannah the sweetest book that she made full of Bible verses of comfort, peace and God’s sweet promises.
  • Another friend Summer sent Hannah a new Barbie outfit in the mail.
  • So thankful for sweet neighbors who have allowed me to use their washer and dryer several times to keep my laundry caught up (in fact I am heading back over there today).
  • God reminded me once again that He is faithful and good to us financially.   The Lord has always provided for us and even though I didn’t want to spend the money last night on a new washer and dryer I am thankful we had it to spend and we didn’t have to wonder where it was coming from.  The Lord promises us in His word that He will be faithful to us if we are faithful to Him in our tithes and offerings and we are firm believers in that.  God has proved Himself over and over again.
  • Another huge blessing was in the form of our good friend Brian (who by the way loves my blog posts when I use bullet format….you are welcome Brian).  Brian met me up at Lowe’s last night and helped me in getting our new washer and dryer.  He spent 2 hours with me while I decided on which one I wanted (I had narrowed it down to 3 brands prior to going or we would have been there so much longer, ha)!  He even helped me decide which was the best between them (it happened to be the most expensive set so I am blaming him for that).  HA!  Anyway, he and his wife Monica are so dear to us and it meant so much to me that Brian gave up his night to hang with me at Lowe’s!  I am certain he had better things to do with his time than shop with a woman who wasn’t his wife!  Dennis was extremely grateful as he didn’t want to go with me…..he got to stay home and take care of Hannah.

So in all our struggles this week I have seen God’s hand.  I have been stressed and frustrated at times but when I sit down, take a minute to breathe and really think about it I can find the things to be grateful and thankful for.  Dennis came home one day last week and I can’t remember what was said that prompted this but he said, “our life didn’t turn out the way we planned or what we wanted but it is the hand we have been dealt and we have to just do it… matter how bad it hurts, how sad or frustrating it can be…..we just do it.”  You know, that is so true.  We don’t know why things happen.  We don’t always like the things that happen but it is life…..things just happen; good, bad, sad, fun, frustrating, stressful, joyful……all we can do it go with the flow even those days/weeks/months where Murphy’s Law is in full effect!

Reading her new book from Mrs. Sarah


Happy girl…..Hannah LOVES books!


Until next time………

When I Get Where I’m Going

Last night I went to my first ever “real” concert.  It was a country music concert featuring Brad Paisley.  I will be honest, I really haven’t listened to country music in years.  I grew up listening to it but probably the past 10-12 years I have only listened to Christian music when I listen to music (which is only in the car) and that isn’t often.  Most times in the car I want peace and quiet so I turn the radio off.  If Hannah is with me she always has her iPad so I listen to whatever she is doing on that thing.  Music has never been my thing.  I love it but the Good Lord gave me ZERO talent in that department.  I can’t sing.  I can’t dance; heck I can’t even keep the beat.  In full disclosure, if someone is clapping to the music I have to watch their hands so I can clap too.  If I stop watching their hands I am off-beat in about 2 seconds!  Dennis loves this as he will purposefully mess up the beat because he knows I am watching him and he will crack up laughing at me.  So glad I can be such a source of entertainment!  HA!

Anyway, I guess Dennis wanted to bring something new into my life, give me some culture, a new experience and get me out of my bubble so one of my Christmas presents was a ticket to Brad Paisley’s concert last night in St. Augustine.  Now, I don’t like crowded places and I don’t like anything loud so in all honesty I was not really that excited about this concert but it was a gift and I was going with a dear friend and my sister-in-law (which I am sure I provided them some good laughs last night) so at least I had them and it was a girls night out.  I was nervous as my anxiety about germs and places being too “peoplely” really cause me distress.  But I put on my brave girl pants and went.  I drove because it gave me a sense of control……ha!

It was surprisingly fun.  I didn’t like how loud it was and I didn’t know many of the songs.  Of course I don’t dance but I did find myself  “swaying” to the music!  HA!  Oh and I didn’t clap to keep the beat either (I know better than to do that).  I did lean over at one point and ask Allison “is this song When the Thunder Rolls?”  To which she replied, “that is Garth Brooks, Tamara.”  HA!  See….I truly don’t know my music!  I will say this though, Brad Paisley is quite talented and can play a guitar like nothing I have ever seen.  He was quite mesmerizing to watch.  I only wish I had some of that talent.

But, there was one song that he sang that I think is one of my new favorite songs.  Here are the lyrics.  I tried to attach the video but I couldn’t.  You will have to go watch it on YouTube .  This song just really spoke to me……it is full of hope about Heaven…….Enjoy!

When I Get Where I’m Going
When I get where I’m going
On the far side of the sky
The first thing that I’m gonna do
Is spread my wings and fly
I’m gonna land beside a lion
And run my fingers through his mane
Or I might find out what it’s like
To ride a drop of rain
Yeah, when I get where I’m going
There’ll be only happy tears
I will shed the sins and struggles
I have carried all these years
And I’ll leave my heart wide open
I will love and have no fear
Yeah, when I get where I’m going
Don’t cry for me down here
I’m gonna walk with my grandaddy
And he’ll match me step for step
And I’ll tell him how I missed him
Every minute since he left
Then I’ll hug his neck
Yeah, when I get where I’m going
There’ll be only happy tears
I will shed the sins and struggles
I have carried all these years
And I’ll leave my heart wide open
I will love and have no fear
Yeah, when I get where I’m going
Don’t cry for me down here
So much pain and so much darkness
In this world we stumble through
All these questions I can’t answer
So much work to do
But when I get where I’m going
And I see my Maker’s face
I’ll stand forever in the light
Of His amazing grace
Yeah when I get where I’m going
There’ll be only happy tears
I will love and have no fear
When I get where I’m going
Yeah, when I get where I’m going
Songwriters: George Teren / Rivers Rutherford
When I Get Where I’m Going lyrics © Universal Music Publishing Group, Hori Pro Entertainment Group, Words & Music A Div Of Big Deal Music LLC
 Until next time…….


The Day Our Lives Were Forever Changed

March 8th……the day our lives changed forever……let me explain…….

March 8, 2005

Dennis and I were 17 weeks pregnant with Hannah.  We were so excited as this was the day we had an 8am appointment at my OB’s office to find out the sex of our baby.  We wanted a boy but I knew in my heart our baby was a girl….Dennis was still convinced he was getting a son.  I laid on the table and we watched the nurse do the sonogram.  We watched and waited…..and waited….and waited.  I finally asked her “is everything okay.”  She replied, “just another minute and we will chat.”  She then asked, “do you want to know the sex of the baby” and we said “yes.”  She smiled and said, “well SHE is cooperating… are having a girl.”  We both started laughing.  All Dennis could think of was the money a girl was going to cost him.  Then the nurse said something that sent chills down my spine.  “Stay here, I am going to get the doctor.”  She walked out of the room and I looked at Dennis and said, “something is wrong, we aren’t supposed to see the doctor.”  He told me nothing was wrong; not to worry.  But, I was worried…..I knew in my heart there was a problem with our precious baby and as Dr. Connor (the on-call doctor that day) walked into the room my suspicions were confirmed.  He told me he wanted to take a look if that was okay.  Dennis held my hand as we watched the screen in silence.  It felt like an eternity, but it was probably only 5-10 minutes and then Dr. Connor spoke.  He told us our baby was definitely a girl but she had problems.  (Cue the tears)…..She has markers for a chromosome abnormality he told us and he felt it best to send us right over to ROC, the high risk OB group at Baptist Hospital.  He said their equipment could see more than he could and they could tell us all we needed to know.  He was trying so hard to be reassuring; even saying “this could be nothing” but in my gut….in my heart…..I knew our lives would be forever changed that day.  He used the phone in the exam room and called over to ROC.  As he hung up the phone he told us we had an appointment at 1pm that day.  As Dennis and I walked out of that office, the tears were falling and we neither one knew what to say.  As we got in his car I said, “how do we even pray?”  We felt lost, alone, scared and heartbroken thinking our little girl was already in trouble.

We both called into work and told our employers we wouldn’t be there that day and we drove home.  We both called our parents on the way home and after we got home I made one phone call to a nurse friend of mine Christy who assured me that going to ROC was the right thing to do.  A few hours later we headed back downtown and walked in ROC.  The office was eerily quiet.  We were the only people there.  We were instantly called back and greeted by a nurse and a doctor.  The doctor used a high-tech ultrasound machine and he and the nurse talked back and forth as he looked at our sweet baby.  Again, it felt like forever as I laid there and Dennis held my hand.  The doctor stopped the sonogram and spoke these words I will never forget……”Your fetus is a girl.  Your fetus is very sick.  Your fetus has 4 heart defects, echogenic bowels, one femur is shorter than the other, fluid on its spine and thickening of the neck.  These are all markers for a chromosome abnormality.  Most likely Trisomy 13 or 18 which are incompatible with human life.  Your only option is to terminate this pregnancy and try again to get pregnant in 3-4 months… harm no foul.”  With tears streaming down my face I said, “abortion is not an option.”  He then stated…..”you don’t know what you are facing.  Your fetus will never survive birth and if by some chance it does it will need immediate open heart surgery and will never survive it.”  I spoke again and said, “abortion is not an option.”  To which he replied…..”You are thinking emotionally instead of logically.  This baby will not survive.”  Dennis looked at him with tears streaming down his face and pointed his finger at the doctor and said, “Then you don’t know my God.  My wife said, abortion is not an option.  Don’t mention it again.”  The doctor looked at us and said, “You will most likely have a late-term miscarriage.  Don’t plan on bringing your baby home… will be planning a funeral instead.”  I looked at him through sobbing tears and said…..”then that is God’s choice.”  With that he left.  The nurse had me get dressed and led us into a counseling room where a counselor walked in to discuss our options.  I immediately spoke up and told her to not mention terminating this pregnancy to us again, as it was not happening.  She was kind, handed us a box of kleenex and gave us time to just sit for a few minutes before leaving.  As I sat there I looked back on that conversation with the doctor.  He referred to my baby as a “fetus” the entire time except at the very end.  He never referred to her as “she” but instead “it.”  He was trying to make us see her as he did…..a clump or cluster of tissue.  But, to us, to GOD she was a little human with 10 tiny fingers, 10 tiny toes, a formed body and a beating heart.  Yes, her heart was bad and terribly flawed and her chromosomes were out of whack but she was “fearfully and wonderfully made in God’s image.”  He created her perfectly for us…….

When we finally got out of there we were numb.  We were scared.  We felt all alone.  But, we had fought for this little girl’s life and as we got in the car I put my hand on my belly and said…..”Hannah Brooke Blankinchip I promise you that your mama and daddy are going to fight for you as long as we have breath in our lungs,” and fight we did and continue to do; now even 13 years later and my promise remains the same.



Until next time…….

Purpose In Your Pain

This past week I shared a video on my Facebook Page from “Woah Susannah.”  She is an author and public speaker and does videos all the time on Facebook which are usually hysterical to watch.  The one from this week though was serious.  She was talking about there being purpose in your pain.  No matter what you are going through God has a purpose for it.  She spoke of her miscarriages, her parents death, etc.  It hit me that we all have pain; some people hide their pain from the world and others, like me share it.  I hope I never come across as “complaining” about my pain and if I do, I sincerely apologize for coming across that way.  I only “share” what I do as a way to let others know they aren’t alone; that God loves them and they can depend on Him.

Life is hard.  Life is messy.  Life sometimes sucks bad.  The past few weeks around here have been awful and the past week has been the worst of it.  Hannah is going through something.  I think she is still “flaring” from some germ she came in contact with as PANDAS flares can last a long time.  But, I also think there could be some wacky hormone issues or something happening as well…..she is almost 13 years old, so there’s that!  UGH!  Anyway, the past week has been a rollercoaster ride of emotions.  She could be crying uncontrollably one minute and manic and crazy acting the next.  She can then switch gears to anger and then happiness and then all of a sudden, out of the blue be crying again!  It is enough to drive a sane person crazy.  As a mom, watching it, is heartbreaking and confusing.  I can ask her “what is wrong” or “why” and her only response is “I don’t really know.”  She cannot communicate appropriately and thus makes it more frustrating for us both.

I shared that video about purpose in  your pain earlier this week and I understood it…..I agree with it; but then last night (after watching Hannah and some self-harm behaviors and puddles and puddles of tears) I thought to myself is there really purpose in THIS pain.  I mean, what if it is just life and there is no reason for it all?  What if we go through all this pain and find out it is just life and that this life has no purpose; that the things we go through aren’t for any specific reason?  What a depressing thought that you can go through heartaches and trials and there is no big grand awakening moment that is going to come from it.  UGH……yes, I do analyze every dang thing in my life.  HA!  Sometimes my analyzing comes through quite positive and other times (like last night) it was all negative.  Life… there truly a purpose in the pain we go through?  I want to believe there is but this past week has left me feeling completely defeated and weary.

Last night through Hannah’s sobs and tears she kept looking at me and saying, “no more night, no more tears, no more pain.”  It broke my heart as she knows  in Heaven all those things will be gone.  She then started saying, “I love Grandpa, I love Maw-Maw, I love Aunt Angie, I love Thomas (Maw-Maw’s cat).  All of those loved ones are in Heaven.  So, in Hannah’s own precious way she was saying she was ready for Heaven and frankly I am too.  The thought of no more pain, suffering, tears, death, sickness or sorrows.  The fact that all these ranges of emotions we see with Hannah on a daily basis will be gone; that is music to my ears and her ears too!

As we wait for Heaven though, is there purpose in our pain here on earth?  I don’t know the real answer…..I want to believe there is.  I want to know that Hannah is going through all of this and one day the purpose of it all will be realized and understood.  I want to believe that my pain and heartbreak is for a reason and one day it will be realized!  I want to believe that there is nothing we go through that God doesn’t have a specific plan for and it isn’t just LIFE.  I want our pain to help others.  I want there to be a purpose.  I want there to be a reason that my daughter suffers physically, mentally and emotionally on a daily basis.  I want there to be a light at the end of this long and dark tunnel.  I pray there is……I long for it……I anxiously await the day where we look back and these past 4 years are a distant memory and healing has taken place.  I need to know that one day we will look back and see the people who have been helped, loved on and inspired by my little girl and her faith and bravery.  I pray none of this is in vain and that one day we will realize the purpose in our pain.

Until next time…….