and So. . .

and So we are home home and she says she feels even better.

Even though she is doing better – our girl has a long way to go. The reality is setting in for her. Among other things. . . She has issues with the nerves in her face. We are hopeful this is temporary.

She says often, she really didn’t believe she had an accident but, when people she trusted told her did, she thought she must have. 

She tells me, she doesn’t remember any of it. 

I tell her, it’s not important. “Don’t try, I say. We know you had one and here we are. . . recovering.  Thank God”

I find, I can’t say, “she is recovering without adding the words. . .  Thank God.”  

Through this whole ordeal . . . I can’t help but think of our Donor Family and what they must have gone through when whatever happened to our donor happened.

I can’t help but think of them being told to step into that side waiting room like we were told. . . you know those waiting rooms you see on T.V. or the movies? They are there -right off the big emergency room waiting room. . . you know it’s there but, you don’t know were it is.

This is the room set aside for news so bad the family needs privacy.  It’s all blue with light and lots of chairs.

You cling to eachother

and then first the doctors come in and tell you the news. . .

and then the Chaplin.

When we got our news. . . the room spun & my only question was “Is she alive?” I got the answer I wanted

and then because we are Catholic . . . we called for a priest.

and we asked him “to bring all his toys.” 

and we prayed to the Holy Mother and asked her for strength, and to pray for us, and ask Her Son to let us keep our daughter.

and prayed to God himself . . . and prayed, and prayed and prayed.

and when I prayed the Hail Mary I couldn’t say the ending. . . “Now and at the hour of our death”  I just couldn’t.

We went to anyone and everyone we could think of to pray. . . and you fell to your knees and prayed, and prayed without ceasing. . . and then I can’t help but say, Thank God for you.

and so when I think of our donor family. . . I know they did the same thing.

But, their prayers were answered differently then ours. . . and then they saved my husband.

and people tell me we have had a hard time. . . and we have to say, No, we have had a time . . . maybe the time of our lives – we say with a smile. We have had a time I don’t want to revisit. We have had a time where prayers were answered in exactly the way we begged our sweet Jesus to answer. . . and we know that’s not a hard time. 

Thank God 

The girl who loves music knows people were not meant to have it easy. She knows this and she “offers her struggles up” as the best nana says.

She is strong and she’s recovering.

Thank God

and I keep praying for a full recovery and will ask you to do the same. . . because I know you will.

Much love to you all,

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Gifts:

early morning run alone

quite time to share my thoughts with you

the sharp mind of our girl

work for the fisherman

hugs from my “little boys” as they walk out the door

notes of love from people I hardly know

Lucy running crazy for us bringing the dinners

the dinners – oh! my goodness the dinners filled with love

and cookies and cakes

sleeping puppy

cars that work

school being done

everyone pulling together

being home to care for our girl

 

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Taking Care

I have much to do now that’s she’s almost home and I’ve mostly taken over her care.

and

She asked me yesterday if I was sick of it all yet: guiding the walking, washing the  hair, helping  with mostly everything, waking through the night, checking, and checking again while she sleeps and sleeps and sleeps.  “I told her I was thrilled i get to do it all.  ”  She smiled her half smile and whispered, ” thank you Mom.”

And I read this the other day and thought it might fit: “we live in the world of the broken. We live here because there is no other way.” But then i figured there is another way – a way we don’t want to live.  So we hold our breath, live in the world of the broken, cling to eachother, and count our blessings on our knees.

Gifts:

being welcomed at the best nana’s house for so long – she cooks & bakes and does so much for us

it’s snowing in the Carolinas

soft touches

the best chocolate cake in the world

sitting by the fire

washing her hair

dinner for us made by friends

everyone here at the same time

brothers concerned helping little sister

everyone tucked in safe

Home

She’s home!

Well, she’s not actually home, home

because right now at this point: stairs are just to much to navigate.

So we decided the best Nana’s house and her downstairs bedroom was a perfect fit.

So here is the thing.

Doctors told me because of the support she has they feel like she will make more of a recovery at home then in a rehab. 

So we got to take her home, and already I see improvements.

The Best nana has her eating more today then this girl has eaten in three weeks.

So there is mom’s cooking, and then there is Nana’s cooking and you can’t get better then that. 

We will have a lot to do once all our appointments are settled.  There will be physical therapy for so much but, we are up to the challenge because we are home.

Thank you so much for your continued support & prayers. We couldn’t do it without you.

Much love to you all,

the fisherman and his wife

Gifts:

home on a cold day

homemade apple cake

time with my youngest

visits from a loving friend

courage for frustration when times get though

kisses from you know who

time to rest

food she eats

encouragement from so many

 

 

 

Florence

Things are looking brighter here for our beautiful girl.  Yesterday she had her hair brushed for the first time in 16 days.

Our very patient and loving PCA, Florence Nightingale, sprayed and brushed that matted mess for almost two hours. We talked, laughed and got to know each other.  The girl who loves music held her head high, was gracious and thankful for Ms. Nightingale’s kindness.

You know, there is no denieing it, when a girl gets her hair brushed – she’s on her way to wellness.

and so when it was time for the fisherman and I to pass each other in hospital halls I went to the best nana’s house and spent real time with our girl who loves to dance and he took the nightshift.

Gifts

time spent alone with this girl

friends coming to see

60 degree day in January

visits from gram & a special aunt

peaceful night

watching her sleep

making plans

dinner in hospital cafeteria with oldest son

many hugs

soft breeze

sharing gifts

a good day

Today has been a good day.

She walked.

She walked down the hall.

She walked further then anyone expected.

So really it’s been a great day.

Doctors were considering placing a feeding tube into stomach if she didn’t start eating.  So now, even though medications make her feel sick

she eats.

She has eaten enough for everyone to take a sigh of relief,  and for doctors to say they aren’t considering such drastic measures any more.

It’s been a great day.

and

Tonight she sleeps while we sit in dark.

Light hurts her eyes terribly she says.

Headaches are bad.

Body aches are troublesome.

One day at a time we say.

Every day is better then the last.

Every day she’s more alert.

Every day we are more grateful.

It’s been a great day.

Much love to you all, the fisherman & his wife

Gifts

a beautiful warm day

much was accomplished

company from the philosopher & our girlfriend with brown eyes

time spent with the fisherman *even if it was just an elevator ride & a walk to the parking lot it felt good to be near him lighter then before

smiles from strangers

caring CNA’s

tap tap on the computer while he works in this room

she walked

speech is stronger every day

my sleeping beauty

On the way home from hospital last night the girl who loves to dance said, “Mommy, does God send two miracles to a family?” and even though I knew what she was asking I said. “What do you mean?”

She went on to say, “You know, God sent us a new heart for dad and now do you think my sister will be okay again?”

and I had to answer honestly and said, “Yes, I do. I think she will be okay again. I explained to her how God has sent use thousands of miracles each day. Just sometimes we are to busy to see them.

I told her how she was a miracle, life was just like that I said.  Sometimes miracles stare us right in the face and we miss them. Our job is to find them in each simple day.  .   .and then she and i counted our blessings all the way back to the best Nana’s house.

She asked me to read her a story before I put her to bed and went back to be with our girl. So I did

as I read the Fisherman called with a sound of alarm in his voice.

He said our  girl who loves music was unresponsive and the nurse called for the doctor. Tests were being run and I should come back right away. and I thanked God the Philosopher had just arrived – I couldn’t see through tears in my eyes to drive back  to the city that seemed 1000 miles away this time.

When we hurried into the room the nurse said: “It’s okay!” “She’s sleeping.”  “She’s worn out” “Everything looks really good on the scan.”  “Often times with head traumas once they sleep . . . they sleep & that’s when the true healing begins. ” 

and so she slept.

and again we gave thanks and let her rest. . . our sleeping beauty.

 

Thank you for your continued prayers. I don’t know what we would do without them.

Much love from the Fisherman and his wife

Gifts: 

time alone with the youngest one of us

scans all clear

sun in bay window warming liking a hug

sleep to recover

brothers who rush to be with their sister

prayers

great nursing care

flowers of get well 

Mass cards from so many

food in the fridge when we get home from loving friends 

 

Big Brothers

Sunday was a day to remember.  She pulled out her feeding tube again.  But, it got the attention of the speech therapist who was suppose to clear her for water on Thursday.

Once again we are grateful for her spunk.

I have prayed all day  things will go smoothly and she is able to hold food down.  If it doesn’t they will want to add the feeding tube again and this time tack it. The doctors and nurses and I have gone round and round about this one. . . I just don’t want it. I tell them it will slow her down. . . I know this girl who loves music she will recover quicker if they allow her some control. 

Yesterday was a blood work day for the fisherman. This is a day we travel to Atlanta to check and recheck the heart  with a simple blood test that must be done always at the great and mighty Emory. With this we are grateful for the long ride.

Our little family split up to tackle all we had a head of us that day.

The Philosopher went for the long ride with the Fisherman to Atlanta, Charming stayed watch over the girl who loves music for the night, and I was sent home for a rest up for a full day with our girl.

The day went well, they got this girl up for the first time in 12 days. . . we praised God for another day  and everyone gathered in one little room a city away.

Thank you for your continued prayers. We feel them everyday.

Much love, the fisherman and his wife

Gifts:

water

time to rest

being rescued by my brother the carpenter  *dead battery

full nights rest for our girl

standing up

sitting in a chair

remembering

hugs from sons who love their mother

the best nana with my dancing girl

lunch brought to me by Lucy

visits with sisters

warm sun streaming in hospital window

Good friends coming to pray

a visit from baby life

fast forward

I took this photograph through the mirror in her room with my phone. I’m not sure if I should use it here but . . . I will.

Yesterday was a good day. Girl friends full of life came up to see her. . . to love her.

She rested well through the night.  But, this morning she seems lost, nauseous . . . sick of it all.

Just plan sick.

Tomorrow we should speak to more doctors with news of how our girl really is and a plan.

How I wish we could fast forward to wellness. . . to remember when.

I have to remember she is strong. Tomorrow will be better still.

Much love, the fisherman and his wife

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Gifts:

the best Nana cares for the girl who loves to dance

cookies made with love by Lucy for the staff

hot tea for a long drive home

Cards, letters

fluffy white  clouds on blue sky

nurses who care

 

 

 

 

 

Night time . . .

Night time is hard for her.

Confusion sets in.  She thinks she is driving a bus and wants to stop.

Sometimes she will say abruptly to people,

“Okay, get off.”

We laugh because, it’s funny and it’s not . . . and that makes it more funny.

So we laugh

And even though she is confused her fighting spirit is strong.

Last night she didn’t like the answers I was giving her about why she had to keep her neck brace on . . . “it hurts” she says.  She asked the nurse to help her take it off, and the nurse gave her the same answer I gave her but also said, “the doctor said. . .”

This girl who loves music. . . this fighter girl of mine. . . came back with, “then I want to see the doctor. I want him to tell me why. Your answers no good. You can get off.” 

and I giggled with joy because, I know her brain is working and I have always loved her fighting spirit.

Twenty minutes later at 3 o’clock in the morning, in walks three doctors to see our girl.

She was asleep and we didn’t wake her.

So I told her about the three doctors that came in and told her what they said.

and she said,  “okay mom. I just wanted to know.”

So she’s smart to ask questions and demand answers from the people who are making the rules. . .

and I know she will be fine after all this is done. She’ll be stronger then ever.

She’s a fighter . . . our girl who loves music is a fighter through and through.

Thank God!

Thank you again for your prayers. I’ll update more tomorrow.

Much love, the fisherman and his wife

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Gifts:

soft rain

prayers from more people then I could possibly know

dinner brought to us by a friend

good nurses

a fighting spirit in our girl

cards and letters of love in the mail

good coffee

warm hugs and dinner for my other babies

soft beds

warm fuzzy blankets

finding the humor in middle of the night

 

 

Waiting. . .

We are back to waiting.

and even though we are moving forward there is still much to be patient for.

a feeding tube was added because she’s not able to keep food down

and here is were i must remind myself to be grateful for the ugly

even in the ugly there are graces.

I’m grateful for all of you and how you shower us with your love.

We know you’re the prayer warriors for this family of ours,

praying fiercely for the girl who loves music.

You pray when we are weak and to tired to find the words. You keep us strong.

Much love,

the fisherman and his wife

Gifts

seeing her best friend wearing  her shirt

love from visitors – love and more love

warm glowing light streaming down in the hall

soft blanket I stole from my oldest

brownies & cookies made with love – sometime there is just not enough

doctors who know

prayers from all of you

Charming making sure his parents ride safely home.