Numb

Webster’s Dictionary defines the word “numb” as:  unable to think, feel, or react normally because of something that shocks or upsets you.  That is the one word that describes how Dennis and I feel right now.

Hannah is still sick and last night it all returned…..the anger, rage, aggression, sadness.  The anxiety and extreme OCD had never left but the other things had gotten better, that was until last night.  Her fever spiked again and BOOM…..it hit, out of the blue….the sweet, loving little girl was gone again and she went berserk!  She attacked herself and then turned on me.  Heartbroken, devastated…..just plain  numb!

After we got her to bed, Dennis and I just sat there in tears.  He prayed…..I couldn’t.  All I could do was cry and say “we can’t live like this forever.”  I know, harsh words for a mom to say, but it is true.  This brokenness, this ache, being this worn mentally, physically, emotionally and yes, even spiritually….it takes its toll and it is devastating my family.  I hate this disease and what it has done to my daughter and to Dennis and me.  As Dennis prayed and cried, he begged God to fix this…..to heal Hannah and to restore our family.  I never in a million years would have ever thought that a disease like this existed much less would affect my sweet little girl.

The problem is this…..we don’t know if IVIG is working because we cannot keep Hannah well.  The IVIG cannot do its job if she keeps getting sick but other than literally putting her in a big bubble, there is nothing else we can do to protect her from germs!  I don’t understand why we cannot keep her well…..we are doing everything humanly possible to protect her and yet…..she STILL GETS SICK!  She gets well enough for IVIG and then within a few days is sick for the next 2-3 weeks…….I am lost and I don’t know what to do.  The only thing that will help the rage and aggression are steroids; but we can’t keep using them…..they will cause MANY other issues that she doesn’t need on top of everything else.  There is no doctor in America that will keep her on Prednisone long-term because of the risks associated with the drug….the one drug that helps.  But, without it…..I don’t know how to help her.  We have tried essential oils, homeopathy, diet restrictions……everything…..nothing works!

I am numb……I am grieving in a way that I cannot even put into words……I am lost and the ONLY one that can get us through this is the Lord……these lyrics to the song I Will Lift My Eyes by Bebo  Norman are ringing true for me right now……

God, my God, I cry out:
Your beloved needs You now
God, be near; calm my fear
… And take my doubt

Your kindness is what pulls me up
Your love is all that draws me in

[Chorus:]
I will lift my eyes to the Maker
Of the mountains I can’t climb
I will lift my eyes to the Calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes to You

God, my God, let mercy sing
Her melody over me
And God, right here all I bring
Is all of me

Your kindness is what pulls me up
Your love is all that draws me in

[Chorus:]
I will lift my eyes to the Maker
Of the mountains I can’t climb
I will lift my eyes to the Calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes to You

[Bridge:]
‘Cause You are and You were and You will be forever
The Lover I need to save me
‘Cause You fashioned the earth and You hold it together, God
So hold me now

[Chorus:]
I will lift my eyes to the Maker
Of the mountains I can’t climb
I will lift my eyes to the Calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes to You
I will lift my eyes, lift my eyes to You

God, my God, I cry out:
Your beloved needs You now…

Please continue praying for us and Hannah’s doctors…..we are in desperate need of God intervening and healing Hannah…….we are so broken and numb……

Until next time……..

Sad……Just Sad

Honesty, right?!?!?  I am sad…..just really sad.  I have said many times that Sunday’s are my worst day of the week and that remains true.  This entire week has felt like my usual Sunday though and I am just so sad.  I feel sometimes as if my heart cannot break anymore and then you know what…..it does!  I know people say you have to “choose joy.”  I promise….I swear….I try every.single.day to choose joy but lately, that has been the most difficult thing to do.  Who knows….maybe I am not as spiritual as those that can choose joy daily in all circumstances but joyful is not how I feel.  It is hard to give thanks in all things; even though I promise I try.  I can find things in my situation to give thanks for…but, the situation itself….I fail in giving thanks for it some days.  I can be thankful that Hannah is alive.  I can be thankful that we aren’t stuck in a hospital all the time and that we do, for the most part get to be at home.  I can be thankful that we have doctors that truly care and are doing everything in their power to help my little girl get better.  I can be thankful that there are medical treatments to help her and that we haven’t run out of options….there are things that I can be thankful for and I am, daily!  But, in all honesty….walking this journey for so long with still no end in sight, that is really hard for me to find joy and most days I am just plain sad!

This week has been especially difficult.  Hannah once again caught what I am calling a “double bug.”  It started Tuesday evening with a tummy bug and then as that seemed to clear up she caught some kind of viral infection that spiked her a fever of 104.4 and made her blood do crazy things; especially her Hemoglobin.  Of course, being anemic doesn’t help the hemoglobin anyway!  We thought her fever was better until last night and it spiked again, this time to almost 103.  She feels downright crabby and crappy!  Her blood work is still bad, although it has improved slightly, but we are monitoring her closely.  With her history of seizures and syncope episodes I haven’t taken my eyes off of her since she got sick on Tuesday.   That, in itself is exhausting; not to mention she isn’t sleeping again, even though she is exhausted.  Last night I lost count of how many times I walked her back to bed after getting up and coming into our room.

IVIG is supposed to be the treatment that will bring her back to us and it should eventually help her immune-deficiency, but as of right now, it appears to be making her immune system even worse.  The last 2 months after IVIG she has gotten sick and stayed sick for nearly the entire 3 weeks prior to her next round of IVIG.  This is absolutely exhausting.

I haven’t been able to really be on social media much again because it makes me extremely sad…..sad at the life out there that we all 3 are missing.  I find myself withdrawing again from people and the world because it is easier than facing it and seeing all that my little girl is missing out on.  I can physically, emotionally and mentally handle being a prisoner in my own home…..it isn’t easy but I know why I am doing it and that I have no other choice.  But, Hannah????  WHY??  WHY??  WHY, does she have to endure this existence?  Why can’t she live and enjoy the things in life that are out there?  Just to have friends, go to school and church (which I hear many times daily from her that she wants to do).  It is unfair and cruel!  I know, life isn’t fair but tell that to a child who has a cognitive delay and is sick ALL.THE.TIME!  It is unfair and I hate this for her.  Life just sucks and I am so over this!

Yes, I am whining today…..so sorry but we are in a valley and I truly have lost sight of the mountain top….in fact, I don’t think it is there anymore!  I almost have determined that this is going to be our life from here on out and that in itself is so depressing!  Can I do this forever?  The answer to that question is left to be seen.  How long can Hannah’s little body do this?  I don’t honestly know and I don’t think her doctors do either.

Sad, just very sad.  I trust the Lord.  My hope is in Him…that has’t changed nor will it ever.  I will say this though….I BELIEVE with everything I have in me that my God can heal Hannah.  I believed with everything in me that He could and would heal my best friend Angie from cancer.  I believe with everything in me that He can do anything.  But, I also believe He chooses not to for reasons that we don’t know.  Angie didn’t get her earthly healing and I don’t know why other than God had a reason that He hasn’t revealed to us and at this time He has chosen for reasons I don’t understand not to heal Hannah.  It isn’t that He can’t but He hasn’t yet.  I am saying this to say my faith in Him is as strong as ever but I am a realist and I know that no matter what I claim in His name it doesn’t mean that He is going to do it the way I want it done.  I believe that He can, I just don’t know that He will.  If that makes me a bad Christian, then I am sorry…..but the realist in me…..the way God created me has to know that He has a plan that I know nothing about.  What He chooses will be done……I don’t care how much I believe it or claim it or say it……I have NO control in this situation.  In all honesty, that is good because if I had control I would most likely screw it up anyway.  Also, for the naysayers out there and yes  I still have them……God is not punishing me by giving me a child with health issues.  This isn’t a punishment (yes, believe it or not some believe that).  God has a reason…..I don’t know what it is but He has one and I am holding tight to the fact that He alone will see us through this, no matter what!  That is ALL I have to cling to!

Sorry for the little rant……I am sad and a little angry too.  I am human and I am allowed!  It is unfair and depressing to watch your child live and hurt like this day in and day out.  My life is way different from most people and I am doing the best that I can; I pray that I am pleasing the Lord in all I do and the mother that I am.  He is the ONLY one I need to please.  He knows my heart and He knows my thoughts and I trust that He alone will carry me, especially on days like today when I am having difficulty putting one foot in front of the other.

For those that are praying for us, please continue…….I know those prayers are not falling on deaf ears.  I know our God hears and He will answer in His timing…….I still believe that!

A little throwback to happier times before this nightmare hit!

A little throwback to happier times before this nightmare hit!  I miss this dog and this little girl so much it makes my heart ache!

Until next time…….

 

 

 

The Calm Before The Storm

Well, I supposed yesterday’s blog post was truly the calm before the storm.  Literally not 2 hours after I posted it, the storm hit!

Hannah has some kind of tummy bug which I am afraid has now spiked the inflammation on her brain which has resulted in LOTS of tears, lethargy, anxiety, anger, extreme OCD and a “gagging” tic.  On top of that, I bent over to pick a SOCK up off the floor and after hearing and feeling “snap, crackle and pop,” I was in severe pain in my back, backside and leg….oh, will someone just SHOOT ME!  I actually posted on Facebook, if it weren’t for bad luck, the Blankinchip’s would have no luck at all!

So, after calls to Hannah’s Pediatrician, Hematologist and Gastroenterologist we have to wait.  Hopefully this viral bug will pass quickly and the inflammation will reduce on her brain.  That is the problem with any illness for Hannah.  It causes the inflammation to get worse which brings all of the personality and behavior changes associated with PANDAS front and center.  Needless to say, I am keeping a safe distance from her today but not letting her out of my sight afraid a seizure could occur.

This is why we can’t expose Hannah to anything…..the only place she has been since we got home from St. Pete last Friday was to Nemours and Wolfson’s Children’s Hospital for 4 hours on Monday for doctor appointments and testing!  That is just how low her immune system is.  Funny thing is while at the appointments we didn’t really come in contact with many people (it was surprisingly not real crowded) and she never used the restroom.  She held it until we got home.  So, whatever was “in the air” attached itself to her and BAM….she gets sick!  I truly detest germs, bacteria, viruses, sickness……oh to have a child that was healthy……I long for that not just for me but for her!  Every time she gets sick, my heart breaks and frankly I get mad!  I ask WHY (of course I don’t get an answer).  I don’t know why some kids have to suffer constantly and in all selfishness I wonder why it has to be my kid.  Just keeping it real here people, just keeping it real.  I don’t wish this on anyone but geez…..my child cannot catch a break and I just don’t get why this roller coaster won’t stop even for just awhile.

Okay, I am going to stop complaining now…..I should be used to this life but in all reality I don’t know if you ever get used to it completely.  I just keep hoping to start blogging fun and happy things…..maybe one day.  As of right now…..as hard as I try to choose joy; I am finding it really difficult.

My view this morning......

My view this morning……prayers appreciated!

Until next time……

Update On Hannah

I have had several people ask about Hannah so I thought I would post a quick update since last week’s IVIG.  She is doing pretty good and had no bad side effects from Round 2 HD IVIG.  Praise the Lord!  She did have a slight headache a couple of mornings but with a dose of Prednisone, the symptoms were relieved!  Today has been a good day, so far.  We even did SCHOOL WORK!  YAY!  This was the first time I have really been able to do a lot of school work with her for over a month without being stabbed with a pencil (yes, that has happened more than once).  She stayed on task, she was happy, she wanted “more please” and she did it all correctly.  Even her handwriting is greatly improved.  Her handwriting (all fine motor skills) have been severely affected by PANDAS and had declined horribly.  Today was an improvement.  So, I find that very encouraging.  We are also off the steroids and we are now weaning her off one of her anti-psychotic medications (the one I detest that has horrific side effects).  Praying that we can stay off the steroids now and get rid of several of these other medications that are wreaking havoc with other issues in her system.  You know, one medication significantly helps one thing but hurts three other things….UGH!

Yesterday was a busy day though, because as always with Hannah we have other health concerns that creep up on us that have to be investigated.  We met with our new Hematologist yesterday and I loved her!  Dr. Bansal, at Nemours took a lot of time with us and listened to us.  It helped that she and our Pediatrician, Dr. Kim had already spoken at length.  Hannah is severely anemic and Dr. Bansal and Dr. Kim are working together to figure out why and what we need to do.  We had more lab work done yesterday (yes my child is a human pin-cushion) and I have already heard back from Dr. Bansal this morning with the results.  They were what we were afraid of.  It showed several things that are concerning but again, I feel we are in great hands with Dr. Bansal and she is getting a plan and protocol in place to help Hannah get through this.  We also saw Dr. Marvin, Hannah’s Cardiologist for her 6-week EKG.  We go every 6 weeks now for an EKG due to the fact that one of Hannah’s medications that she needs can cause heart failure.  So, we monitor her closely while she is on it.  Don’t want to take any chances with her already “bad” heart.  We were at the hospital most of the day yesterday seeing doctors and having testing done but Hannah was great and was rewarded last night with a treat of chocolate ice cream.  If you know me that is huge, because I rarely allow Hannah to have junk food.  Because of some of her medications and weight issues I limit most of that stuff.  With Hannah’s heart, thyroid problems and now her anemia, I have her on a very strict diet but once in a blue moon we have “treats” and ice cream is her favorite of all.  After yesterday, she earned it.

My prayer is now that she will continue to improve this month being off steroids.  The way to see if the IVIG treatments are working is after each treatment she should make significant improvements, then plateau and then decline again prior to the next infusion.  Our hope and prayer is that the improvements and plateau will last longer each time and the decline slow down.  This will be our first “real” month seeing what happens since last month she was on a steroid taper the entire time.  The next 3-4 weeks will be huge for two things…..keeping her well and watching how she does in terms of her anxiety level, aggression/rage, sadness, tics and OCD.  Prayerfully this HD IVIG is going to work and I am hoping that we will see lasting results sooner than later.  I so long for some normalcy and some-sort of “living life” again instead of  “merely existing.”  Heck, if we could just go out to eat as a family or better yet, just go to a family member’s house for dinner without the fear of getting sick or Hannah’s anxiety and sensory processing disorder going wacky!  Longing for normalcy and praying we are on the road to it!

Cheesing it for the camera!

Cheesing it for the camera!

Until next time……..

You Are Worthy

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If I could have my now 43-year-old self go back and impose wisdom and life lessons on my 16-18-year-old self I would have so much to tell that young girl.  I would have so much to say and it would have changed my thought process all those years ago.  Unfortunately, I am here and cannot go back but I can share with anyone who wants to hear the things I have learned and maybe have a different outlook than I did.

I was raised in the 70’s and 80’s.  Let’s just be honest here, even though it wasn’t THAT long ago, times have drastically changed.  People have changed and the way we look at life, issues in society….everything has changed. Some are really good changes, others are not.  But, I can look back and remember that when I was growing up women had labels.  As girls we were taught (without coming right out and saying it) that we were the homemakers, we were not as smart, worthy or able as men.  We had our place in society but there were things that we shouldn’t or couldn’t do.  I bought into that all those years ago.  I believed I had to have a man “complete” me and “take care of  me.”  I was not raised to be independent and I was not raised to take the bull by the horns and be anything I wanted to be.  I was not taught to value myself and my abilities.  I had a very low self-esteem and I honestly felt that no one would ever love me for me….that I had nothing to offer.  Yes, even with my Christian upbringing…..I felt that unworthy!  Let me set this straight though; I had loving parents.  I never doubted their love for me, but they too were raised with that way of thinking.  Women had their place and men had theirs and you didn’t confuse the two.  Women were not supposed to be “leaders,” we were meant to be followers.  We weren’t meant to take care of ourselves because by-golly we needed men to do that.  I cry foul!  I say….thank the Lord for changing times.  I don’t consider myself a feminist, but I believe in the God-given skills and wisdom that women have.  We are a lot smarter than men in a lot of ways.  We are fighters because we have had to be; things aren’t handed to us because of our gender.  Like the old cigarette commercial….”you’ve come a long way baby.”  I believe in the man’s role in society, in marriage, in parenting; but I just as firmly believe in the woman’s role in those things as well.  We have a lot to offer; unfortunately I didn’t know that growing up.

I am saying all of this because I want young girls today to know that they are worthy, they are valuable and they can be and do anything that they want.  Oh, hindsight 20/20, the things I would have done differently.  First and foremost my relationship with Christ would have been #1.  I would never have put that relationship to the side for ANY man!  #2, I would have pursued my dreams with everything I had.  College wouldn’t have been a choice, it would have been a requirement for me!  Yes, I never finished college and that is one of  my biggest regrets.  I would have gone away for college; not stayed here at home.  You don’t know what you are capable of until you get out on your own.  You have to do that.  You have to take that leap of faith to know that you are strong, capable and able.  I didn’t know that about myself.  I had too much doubt that I would have failed, and instead of trying; I failed anyway because I didn’t pursue my dreams.  I turned down a FULL-BLOWN scholarship to Liberty University because of FEAR!  Don’t let fear win.  Don’t let fear overpower you and don’t let fear dictate your life.  I did and I have so many regrets because of fear and instead of looking fear in the face; I ran from it.

Fear kept me from leaving home to go away to college.  Fear kept me from believing I could be anything I wanted to be.  Fear made me feel that I was unworthy of love and would never find someone to love me.  Fear was my enemy and it is used by the devil to paralyze you and for me, it did.  Don’t let it do that to you.

I struggled…..my 20’s were VERY hard.  I was in and out of bad relationships trying to find the love that I never believed I was worthy of.  I ALWAYS dated the wrong guys….not that the guys I dated were bad, they weren’t bad; they were just bad for me and I was bad for them.  The relationships were rocky and were never started on a firm foundation with Christ.  Again, I always put my relationship to Christ 2nd….that was my #1 problem.

Let’s just say, when Dennis got me I had lots of baggage.  I still hadn’t learned…..I was still struggling and I was still placing all my self-worth and value on the love of a man.  Dennis did love me unconditionally.  He accepted that baggage, even though at times we struggled with my baggage.  He knew I didn’t love myself and he truly tried to help me overcome that.  I never stood up for  myself.  I allowed myself to be a doormat my entire life and I never fought for what I wanted or the things I thought were right.

Then…..I had Hannah.  Yes, it took me having a child with special needs to learn to love myself, value myself, feel worthy of my husband’s love and the love of others.  It took this little girl to teach me how to fight for the things that I believed in and she taught me not to be ANYONE’S doormat.  She taught me to truly not care what others said or thought and she also taught me the most important thing…..my relationship with the Lord is the MOST important thing in my life.  Trusting Him, serving Him and loving Him….nothing is more important than that.  Having Hannah opened my eyes to all the things I believed in, that were wrong.  All those things I believed growing up that were false and believing them was my downfall.

Women are worthy, we are valuable, we can do anything that we set our minds to.  We can do it ALONE if we need or want to.  As a woman, you are not required to get married and have children.  It is okay if you choose a career over family.  It is okay to pursue your dreams and put marriage and family on the back burner.  It is okay to be self-sufficient and independent.  My advice…..don’t worry about boys….decide what you want to do in life and finish your degree, get your dream job in a city that you love.  Work, save money, enjoy your life and then if you want marriage and family, then let GOD bring that man to you.  Don’t go looking for him….trust me, I didn’t go looking for Dennis and in fact, I was very hesitant to even go out with him the first time because I had just gone through a horrible divorce.  Don’t put your value or worth into anyone but the Lord.  Trust yourself, love yourself and learn to take care of yourself.  You will never be able to love anyone or take care of anyone until you can first, love and take care of yourself.

I have so many regrets and yes, the devil, at times tries to throw those regrets in my face.  At times, I allow him to and it makes me very sad.  I look back and see the mistakes I made, the life-altering bad choices and the consequences for those bad choices and scars I still carry today.  Do it better than I did…..love yourself….you are worthy….you are valuable….you have so much to offer….you can be and do anything you choose to be or do.  Have no regrets.

To end this, I will say…..God’s grace and mercy is amazing and the way He works is quite interesting.  Most people know I never wanted children.  Yes, I would have been perfectly content not having a child.  But, you see, God knew that Hannah was going to be the only way to get me to see my own worth and value.  She was going to be the only way for me to completely TRUST Him, to pick up the pieces of my life and learn to stand up for myself and love myself.  I learned to fight for the important things and not worry about the unimportant things.  I learned to value my life and my worth and learn that God loves me in spite of myself.

Yes, I cannot go back and redo the last 25-26 years and in all honesty, there are times I still regret and wish so badly I could turn back the hands of time.  Although, if one young girl reads this and can change the course of her decisions and life; then maybe that is why God allowed me to travel the wrong path for so long…..to show His faithfulness, His redemption and His grace.  He provides all of that and more.  I would just rather others see it through my bad choices and not make any of their own.

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Until next time………

Brave Dragon and Blessings From Strangers

Oh where to begin…..we just got back home from St. Pete and I am exhausted.  We traveled down there on Tuesday afternoon and Hannah had her HD IVIG treatments on Wednesday and Thursday and we came back home today.  I am not one that likes to travel or live out of a suitcase; not even for a vacation, but this is so much worse!  But, you do what you have to do for your child.  We will continue to do this until she is cured…..how long will that be?  Only God knows, so we are trusting Him to give us the strength to do it each month!

On the way to St. Pete.  Hannah was eating a cupful of Fritos which makes for a happy Hannah!

On the way to St. Pete. Hannah was eating a cupful of Honey BBQ Fritos which makes for a happy Hannah!

In Hannah’s words she was a “brave dragon,” (watch Doc McStuffins on Disney and you will see where she got that from).  We showed up at All Children’s bright and early at 8am on Wednesday to begin the first of two infusions.  They gave her all her pre-medications (she gets Tylenol, Benadryl and corticosteroids prior to each infusion) and then put her IV in, got her hooked up by 9:30am and the infusion ran for 6 hours, the flush ran for 30 minutes and then a bolus of fluids for another 30 minutes.  So, by 4:30pm, the nurses removed the IV and sent us back to the hotel for the night.

Wednesday infusion....sitting in the recliner watching the Disney movie "Brave."

Wednesday infusion….sitting in the recliner watching the Disney movie “Brave.”

Our Doctor decided since she did so well with her first infusion last month that we could continue the infusions at the Outpatient Center instead of Inpatient; which is SO much better!  With inpatient the nurses are required to come into the room every 2-3 hours throughout the night to take her temperature and blood pressure and that means no sleep for Hannah and whichever one of us stayed with her.  So, we were thrilled to do this at the Outpatient Center knowing that we could go back to the hotel each night and we would all get a full nights sleep.  Hannah did great that first night and we were back Thursday at 8am for her 2nd infusion.  This one, did not go as well.  Every vein the nurses got the IV in blew.  Finally after the 4th vein blew, the nurses called the PIC-line team to come try.  I posted a PLEASE PRAY status on Facebook and God heard and answered those prayers.  The PIC-line nurses got an IV in and this vein did its job!  So, five sticks and many tears (mostly from me) later, Hannah was hooked up and ready to go.  This time though, we were much later starting, but it all worked out.  Hannah was SO good during the MANY sticks with the IV.  They weren’t just sticks either, there was some manipulation trying to “catch rolling veins,”  it was pretty awful.  Hannah got teary-eyed several times and said, “IV hurt,” but then would say, “Hannah brave dragon.”  She then several times would say, “only one more stick” and then “no more stick, please.”  But, then she would keep saying, “brave dragon mama.”  Bless her sweet heart.  Such a trooper in the face of adversity and pain.  I only wish I was half the “brave dragon” as she is.

Thursday infusion day after the IV drama.   Much better and watching "Finding Nemo."

Thursday infusion day after the IV drama. Much better and watching “Finding Nemo.”

 

Hannah with 2 of her sweet, God-sent, angel nurses!  She adored them and they adored her!  All the nurses at All Children's were incredible!  We felt so taken care of and we knew we were in good hands!

Hannah with 2 of her sweet, God-sent, angel nurses! She adored them and they adored her! All the nurses at All Children’s were incredible! We felt so taken care of and we knew we were in good hands!  If you notice….Hannah is holding her left wrist?  She is holding the gauze on the site of where the IV had just been removed.  My child REFUSES to wear a band-aid but she will hold the gauze until it stops bleeding!

Now, I have to give a shout-out to our hotel, the Staybridge Inn and Suites.  This was our second stay with them and as always they were unbelievable to us.  They are used to having families visiting All Children’s stay with them, as they are only about 3 blocks from the hospital.  They are so sweet, kind, compassionate and accommodating!  We are so thankful to have such a great place to stay while we are there each month.  They serve a free breakfast and on Tuesday, Wednesday and Thursday nights they serve a free buffet dinner so this trip the only meal we had to purchase was dinner for Hannah on Tuesday night (because the hotel didn’t have something she could eat) and lunch for Dennis and me each day.  Hannah’s lunch was included with her outpatient stay.  We have just been so blessed by perfect strangers.

Now, one last blessing that I never saw coming…..there is a restaurant in downtown St. Pete called Bella Brava.  It is an italian restaurant and very yummy!  Hannah wanted spaghetti on Tuesday night so while she and Dennis stayed in the hotel room, I went to Bella Brava to get her a spaghetti dinner.  I got her the adult meal with a side of spinach and figured she would have leftovers (which proved to be all 3 nights worth, ha…huge portions).  I was sitting at the bar waiting for my to go order and I started talking with the 3 hostesses.  They asked where I was from and what brought me to St. Pete.  So, I shared a very brief version of our story with them (I promise it was brief…well, brief for me anyway).  They were real sweet and I got the food and headed out to the curb to wait for my courtesy shuttle back to the hotel.  One of the hostess came out and chatted some more with me as the shuttle got there.  She said, “oh please don’t go yet, I was sent out here to stall you, the manager is getting you a gift card for your next trip down here.”  I was in utter shock.  The manager came out, handed me the gift card and told me if there was anything we needed during our stay each time to let them know.  WOW, what a sweet blessing from a restaurant of all places.  Totally surprising and so unexpected and such a neat blessing!  So, you can be sure we will eat there (well, get it to go anyway since we don’t do restaurants with Hannah) when we go back in May.

Until our next trip, we are home.  Hannah has two appointments on Monday next week.  One is a new patient visit to Hematology to try and figure out why she is severely anemic and the other is to her Cardiologist for her 6-week EKG.  Prayerfully, we can keep Hannah well this coming month and be ready for our next trip to St. Pete in May.

Thank you all for continuing to walk this journey with us and praying for us along the way.

Until next time……..

A Love That Hurts

I am going to be real honest here…..the love you have for your child hurts…..it hurts tremendously!  This love hurts your heart, soul and mind.  In health, in sickness, as a baby, toddler and child; it just flat out hurts.  It is a good hurt and bad hurt all wrapped up into a package that you can’t fathom living without and yet it disrupts your whole world in a way that you never imagined.  The once selfish person you were is now solely wrapped up into this person that needs you 100%.  This little person that cannot fend for themselves and takes you to a place you never imagined existed.  A place of strength, fear, wholeness, helplessness and dependency.  A place that leaves you vulnerable and yet stronger than ever before.  A place that sometimes you are ready to hit head on and a place that you wish you could runaway from.  Mixed emotions daily and yet……you look at this little person and you are hopelessly and helplessly in love and realize you wouldn’t want it any other way.  Strange, huh?

There were several moments today that I looked at Hannah and thought….”oh my goodness, I absolutely love and adore this little girl!”  Not that today was that first realization but it hit me at the oddest times.  I just look at her perfect and sweet little face, hear her sweet little voice and watch her walk and sing to music and I think….”Wow!  God entrusted this child to ME!  What the heck was He thinking?!”  What an awesome and scary experience and yet, no matter how difficult these past 9 1/2 years have been (and trust me they haven’t been a walk in the park) they have been a gift, and I am so indeed grateful today!

Grateful for all this special little girl has taught me so and grateful for this time I get to be her mom.  Life is short.  None of us are guaranteed tomorrow and I truly want to count each day as joy!  Life is hard….I will be the first to admit that I struggle, A LOT; but God’s grace is truly sufficient and I am so thankful for this time with Hannah.  I don’t enjoy the way she has and is suffering through her illness but I am so thankful that God has given me the strength, grace and mercy to handle it.  I am thankful that I get to be with her 24/7; even though there are days that I long for a break, a night out with Dennis (which we haven’t had in nearly a year), and a vacation.  I keep telling myself what is important and that is being everything for Hannah that she needs me to be.  I am thankful I can do that….that is a blessing and I count it all joy.

Hannah made me smile many times today as I thought about the death  sentence she was given when I was pregnant and even after she was born…..how far she has come, the trials she has faced and the hurdles she has crossed!  Yes…..blessed to be her mom no matter how painful, heartbreaking and hurtful it is at times….I am blessed!

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Until next time………