My heart

This entry is for Hannah, but we would be honored for you all to share in our journey.

Oh my girl - mommy doesn't even know where to begin.  You have been my hero since you were born.  A struggle even before you entered the world, you were our fighter.  Days in the NICU, home on a heart monitor, multiple doctors and unknowns.  Many sleepless nights for mommy - and I now treasure every one.

You are so strong.

Then at 18 months, the unknown again.  Why was your ankle swollen, why were you in so much pain?  Again, multiple doctors and tests.  Juvenile idiopathic arthritis.  How is that even possible at 18 months?  Why God?  Meds, injections, inflammation in your eyes.  Trying to hold you down to put drops in every two hours, trying to keep sunglasses on a two year old every time we went outside. We prayed for healing, for answers, for understanding.  You were our fighter.

You are so strong.

Fall of 2011.  Your arthritis was still there, but most days you were running around playing.  And then you threw up, one random day in September.  Just once.  You know mommy - my little ticking time bombs.  I hate the stomach bug!  But no one else got it.  A few weeks later, you threw up again.  Once. But no one else.  And then again, and a week later again.  Your labs were fine, once in awhile you would complain about your left side hurting.  You started losing weight.  I finally took you to the emergency room right before Christmas.  They told me you had anxiety-related reflux - I know, those preschool days were rough:).  Momma didn't buy it and I refused to leave until they did a scan of your belly.  They did an ultrasound to pacify me (I'm sure they had choice words to say about me demanding they scan you) and I could tell from the ultrasound tech's face that something was wrong.  You had severe hydronephrosis (your left kidney was grossly enlarged), and that was causing the side pain and vomiting.  They sent us immediately down to Maria Fareri Children's Hospital to see Dr. Lori Dyer.  Starting in January, you had 5 surgeries over the next 5 months, to place stents, fix an obstruction, more stents, and finallyto  reconstruct your ureters and bladder.  We spent weeks in the hospital and you never stopped smiling or amazing us with your gorgeous smile and never-ending positive attitude.  I prayed constantly - for God to take this from you and give it to me.  For complete healing.  For just one pain-free day. To steady Dr. Lori's hands as she operated on you for 6 hours. You were only 4.

You are so strong.

Over the next 6 years, we saw doctors constantly.  Rheumatology, urology, ophthalmology.... ultrasounds, mri's labs.  You were started on low-dose chemo for your arthritis.  I injected you with it every Saturday night and you would spend the next 36 hours vomiting.  It was the hardest thing I had ever done - sticking that needle into your stomach knowing I was injecting a toxic chemical into your body that was going to make your hair fall out and cause vomiting for days.  Every week.  You had pain every day, you wore braces on your little ankles to stop them from growing the wrong way.  And yet you were my constant sunshine, always smiling, always thanking me for giving you your injections.  Oh, my heart broke every day. And I dreaded Saturday nights. Why God?  Why?  Give it to me.  I'll gladly take it for her.  I prayed that you would never know that my hand shook while I was drawing up your chemo, that I desperately wanted to run away every Saturday night so I didn't have to make you sick.  I prayed constantly, many days without words, just my heart broken for you and knowing that He knew my longings, my unspoken words.

You are so strong.

April 18, 2015.  You were jumping on the trampoline and I heard a scream I will never forget.  You had shattered your tibia and fibula in over 15 different places.  Surgery. A bright pink cast from hip to toes for 6 weeks.  Wheelchair to couch to wheelchair.  Then a below the knee cast for 6 weeks with crutches.  Then a walking boot for a month.  No swimming in our pool, you had to watch your siblings play and have fun while you sat on the sidelines.  I cried with you, held you when you said "it's not fair, why me again"?  And then you dried you tears and smiled and went on with life.  You amaze me with your strength, physically, emotionally, mentally.  And after all the casts and boots were off, what did you do?  You jumped on the trampoline!

You are so strong.

February 2017. We had found doctors for you at Hopkins, but you were not getting better, in fact your arthritis had spread to both ankles, your back, and possibly your jaw.  We prayed about what to do, and we finally switched to the Children's Hospital of Philadelphia and met Dr. Weaver.  His strong presence instantly calmed us both, and he had you laughing within minutes.  But he told us what I had been dreading - you were getting worse and we needed to switch your meds.  To Enbrel.  Another injection, this one with the possible side effect of lymphoma or leukemia later in life.  Dear God - How do I make that decision?  How can I inject her with that knowing what it might cause?  He calmly explained what could happen if we didn't start it and we knew that he was right, you needed it.  $1200 a week sitting in my fridge door.  I wanted to vomit.  Every friday night you continued to thank me when I gave you your injection.  I wish I could say it got easier for me - I give hundreds of shots a year at work and don't even think about it.  But my sweet girl, you are my heart, and it shatters every time I draw up your meds.  But it worked.  You started to feel better.  You weren't losing your hair, you didn't throw up at all.  You were able to go to the mall and not sit in your wheelchair the whole time.  The mornings became easier - you could move without horrible pain and you didn't need to sit in a warm bathtub in able to move.  We prayed for complete healing, we thanked God for pain-free days.  We thanked God for every day you weren't in the hospital.

You are so strong.

Summer 2018.  You came to me and said you had a few bumps around your left thumb.  I told you not to pick them:).  And then they spread.  Under your nail, and then the nail fell off.  Countless doctors, meds, pills, creams, ointments. Nothing helped.  And we have no idea whats happening to your joints inside, we can only see the outside.  The whole time my heart cried out to our God - please no.  Not again.  Hasn't she gone through enough?  Give it to me.  Please.  In August we received a new diagnosis, and a medicine that seemed to help.  But then it stopped.  And it spread.  Your fingers and heels look so painful precious one.  Cracked, bleeding.  How do you do it every day?  You get up, snuggle with me, all smiles, ready to take on the day.  I look around and see all the healthy children and I am screaming on the inside - why you?  why more?  please no!  But you are here, not in the hospital.  You are home, constantly positive, my sunshine.  And now we have a new drug, one with the potential to take this away.  $20,000 sitting in my fridge.  But will it?  Only He knows.  But I rest today in the knowledge that He has never left us, none of this is a surprise to Him.  He loves you so much more than I can ever comprehend.  Oh sweet girl, I pray you continue to feel His love and experience His peace.

You are so strong.

You are my singer, and there is nothing that you love more in the morning before school than turning on the speaker and belting out songs with mommy.  Our song has always been "Trust in You" by Lauren Daigle.  Precious one, never forget the words of our song.  Momma loves you.

You are so strong.

Letting go of every single dream
I lay each one down at Your feet
Every moment of my wandering
Never changes what You see
I try to win this war
I confess, my hands are weary, I need Your rest
Mighty warrior, king of the fight
No matter what I face You're by my side

When You don't move the mountains
I'm needing You to move
When You don't part the waters
I wish I could walk through

When You don't give the answers

As I cry out to You
I will trust, I will trust, I will trust in You

Truth is, You know what tomorrow brings
There's not a day ahead You have not seen
So let all things be my life and breath
I want what You want Lord and nothing less

When You don't move the mountains
I'm needing You to move
When You don't part the waters
I wish I could walk through
When You don't give the answers
As I cry out to You
I will trust, I will trust, I will trust in You
I will trust in You

You are my strength and comfort
You are my steady hand
You are my firm foudation
The rock on which I stand
Your ways are always higher
Your plans are always good
There's not a place where I'll go
You've not already stood

When You don't move the mountains
I'm needing You to move
When You don't part the waters
I wish I could walk through
When You don't give the answers
As I cry out to You
I will trust, I will trust, I will trust in You
I will trust in You
I will trust in You
I will trust in You