From BaBa to Joise's medical team about Josie's heart

 Dr. Feinstein labels PH,  "the great humbler."  Watching Team Josie assemble from 2010 when we fell in love with this courageous little girl has been humbling.  Kim and I had a steep learning curve to the responsibilities a very unique sub-set of parents have. Reading the e-mails between us,  as Dr. Feinstein recovers from having his leg broken, I am grateful for the personal attention each of you are giving to honoring HIPPA and getting Josie the best medical care available.  I can only Hope that I accept , as Josie accepts, that we are doing all that can be done after  the 3 years she went untreated in China.

      I have been told to "watch the patient," and from my non-medical view, Josie is happy.  She loves playing with June and each time Josie is in-hospital,  June writes get-well cards for "my Josie," to which Josie replies,  "Thank you, my JJ." Recently I watched my GodDaughter assume the responsibilities of being married.  A favorite photo is Gina standing beside her "sister," Danielle,  who was adopted into my brother's heart at 18 months, several years before Gina arrived miraculously.  Danielle's son, Colin,  was diagnosed,  in-utero, as having cleft palate and I had the privilege of watching Danielle research and find and get the very best plastic surgery repair possible.  Colin has a sister Aubrey who is lovely but not without a few medical issues.

      All of you have the vocation to ameliorate conditions we bring to you in Hope.  You  endure our frustration and impatience.  You have families of your own,  need vacations,  have many other patients and must endure the complexities of our health care system which may in some cases coerce you away from the care you would choose to provide.

      We are navigating this latest connection protocol since being able to spare Kim the ordeal of airports, rental cars, hotels, flights with O2 concentrators, etc.  I appreciate all of you and as you read Kim's increasingly exhausted e-mails,  please know that you are treating Kim as well.  If someone would have said that Josie's pneumonia in October 2013, after being treated to Disneyland by Make-A-Wish, would bring Dr. Fagin and Cat onto Team Josie, I wouldn't have believed it.  Josie's treatment  is a lot like that:  a succession of miracles  which empower me to enjoy every breath and  step she takes.  I have a mantra when the terror overcomes me:  "Dig a little deeper and do what must be done." And then Josie smiles, and it is enough.

Sincerely,

BabaJoe

My personal heros

I want to give a shout out to my personal heros. . . .

There is a little girl who wears a 2 lb medication pump every second she is awake, then sleeps next to it every night.
Who is so so brave.
Who knows just what to do when we go to the hospital.
Who works so hard to catch up in language and reading.
Who manages to get sheer joy out of about every second of her life.
Who makes friends anywhere she goes.


Then . . . there is another little girl who runs interference for her little sister.

Works to help her learn to read.
Helps her with all kinds of kid stuff.
Puts her own needs second way too much - and hurts for it.
Who also knows what to do when we go to the hospital.
Who reads to Mom and Sister when they are sick.
Who works so so hard to be a contributor and make things right.
Who prays all the time her little sister will get well.


And the Dad who watches over them every day.
Even when the shenanigans of two very busy little girls wear him down
Who works with his daughters every day to teach them
Who lets them know every day how special and wonderful they are.
Who prays for and with them every night.
Who has to put his own anxiety for the future aside to maintain the present.


I have a very brave bunch living in my house.

When we lose a child

Sometimes it is easier not to look - or to look but not to really SEE.

Adoption, among other things, has been an exercise in SEEING.

Seeing the distress of helpless children in institutions.

Seeing families gain children they love so much through adoption

Seeing families grieve all their children have had to endure and lose simply because they were born in the wrong location.

 I have seen families grieve children lost to incurable diseases.

Opening my heart to adoption meant a door left open to see and feel for the sorrows of others.  Probably a good thing but not an easy one.

I just shared this lyric with a virtual acquaintance.  One of the heart babies they care died unexpectedly.

Weak and wounded sinner
Lost and left to die
O, raise your head for love is passing by

Come to Jesus
Come to Jesus
Come to Jesus and live

Now your burden's lifted
And carried far away
And precious blood has washed away the stain

So sing to Jesus
Sing to Jesus
Sing to Jesus and live

And like a new born baby
Don't be afraid to crawl
And remember when you walk sometimes we fall

So fall on Jesus
Fall on Jesus
Fall on Jesus and live

Sometimes the way is lonely
And steep and filled with pain
So if your sky is dark and pours the rain

Then cry to Jesus
Cry to Jesus
Cry to Jesus and live

Ohh, and when the love spills over
And music fills the night
And when you can't contain your joy inside

Then dance for Jesus
Dance for Jesus
Dance for Jesus and live

And with your final heartbeat
Kiss the world goodbye
Then go in peace, and laugh on glory's side

And fly to Jesus
Fly to Jesus
Fly to Jesus and live

Fly to Jesus
Fly to Jesus
Fly to Jesus and live

Read more: Chris Rice - Untitled Hymn (come To Jesus ) Lyrics | MetroLyrics 

The foreign land

Spoken language is a visit to a foreign country for Ms Josie.  She really enjoys it, but just can't quite get the hang of all the foreign customs.

Between her low O2 as an infant and toddler, orphanage background,  and witches brew of very strong meds she takes now what ought to be a sturdy bridge of neurological connections between thought and expression is instead a tenuous little footbridge across a vast expanse of language.

She is a darn smart little kid (too smart for my good some days) but I begin to see that people will see her disability first and judge by that rather than watch and see what she is really about.

Just had the "your child is not progressing as quickly as we would expect" talk with the preschool.   They love her, but see that she masters a skill, then loses it only to start over again.

 A wee bit discouraged today.  I should not be.  The first miracle is she is alive and actually improving.  I am waiting to see the following ones.

Why are things so hard for us in this life?  Could it be so we understand the price paid for us?
 The angels look at the mystery of salvation in wonder and want to understand, but can't.

There is singing up in Heaven such as we have never known,
Where the angels sing the praises of the Lamb upon the throne,
Their sweet harps are ever tuneful, and their voices always clear,
O that we might be more like them while we serve the Master here!

But I hear another anthem, blending voices clear and strong,
"Unto Him Who hath redeemed us and hath bought us," is the song;
We have come through tribulation to this land so fair and bright,
In the fountain freely flowing He hath made our garments white.

Holy, holy, is what the angels sing,
And I expect to help them make the courts of heaven ring;
But when I sing redemption's story, they will fold their wings,
For angels never felt the joys that our salvation brings.

Triggers

We have been going to our next door neighbors on Christmas Eve for  years on and off.  They have a large local family and I think they feel sorry for us.  We go for a couple hours and chat up the grands and great grands, eat, then go home and prep for the next day.

Tonight we took the two girls over.  We had fun. They had dinner and a game of Go Fish.  Josie tried to cheat as usual.


It happened when we left.  One of the Mom's grabbed Josie and put her on her lap and hugged her and kissed her goodbye - and held on teasing her a bit.  Perfectly natural, and Josie was laughing.  But as we left it hit her and she started to cry.  I carried her home and we talked.

She was afraid.  Afraid that new mom would keep her and she would not go home again with us.

She has been ours for two years.  But she remembers.

We got it from JJ tonight - Christmas was wonderful but of course stressful.  All the excitement and exhaustion took it's toll - and JJ tried a control tactic we have not seen in months and months.  Failure of the tactic lead to a big meltdown.  Fortunately it does no take as long to help her calm down now.

JJ was only 19 months.  She does not really remember - but in her heart she knows that scary things can happen and you need to be in control.

My new definition of brave . . .

Josie's maternal malnutrition finally caught up with her.  She had a nice big cavity in one molar and a tiny one on the other side.  We watched it anxiously the whole time she was in the hospital because she has soft enamel and any cavities will spread quickly, but first things first.

Her big cavity was indeed hurting her, and we were finally able to get x-rays and schedule her repair for today.  She needed on side capped and one side filled.

Here is the hard part.  Her pulmonary hypertension means no sedation at all outside a hospital.  So we crossed our fingers and brought her in for our best try because no one wants to go right back in hospital, even for just dental work.

Josie got her mouth numbed and then they placed the mouth vise and dam and started.  She yelled.  She cried.  And she held still well enough to get the big tooth cleaned up and a nice silver cap.

The dentist gave her a break and we  and let her sit and cry and talk for a while.  We told her we needed to finish the other side so we didn't have to come back and start over

When the dentist came back and it was time to start again Josie got off my lap and CRAWLED INTO THE DENTAL CHAIR ON HER OWN.

I have never been in more awe of a five year old.  Ever.

We got the second half done with some more crying and tears.  But it is done.

And I have a new appreciation for what brave can mean.