2 Months on the List

Today marks 2 months that Hope has been waiting for her perfect new heart.  She has been in the hospital for 82 days and there are days that it feels much shorter and others that feel like it has been much longer.  We have moved into the 'penthouse suite' of M40.  It is a HUGE room with an adjoining bathroom.  It has a ton more open space than the other rooms we have been in and we are making it more and more like home every day.  I am hopeful that we won't get too comfortable in the room as we would like Hope to spend some time at home this summer...but we also know that waiting for the perfect heart can take some time.

We have met so many great families in our time at the hospital and I am always thrilled when they leave.  I hate to think of anyone else having to spend this much time at the hospital.  It is not easy and there are times when it is downright depressing.  Visitors are great and we love to have people stop in when they have appointments or are staying for a little while recovering (or for IV antibiotics).

We have also been so privileged to have so many great friends and family.  Hope has received so many great presents, cards, and prayers.  Thank you never seems enough for what everyone has done for our family.  Complete strangers (and A Special Wish Foundation) have shown us the true spirit of giving.  My heart is so full of gratitude and I wish there were better words to show our appreciation, but THANK YOU so much for your support.

Waiting

The waiting is a bittersweet experience.  It is long and provides a huge opportunity to think about life and all of the miracles and blessings we have experienced.  It is hard thinking about another family losing their child...it is unbearable actually.  It fills me with so much gratitude and love for the family...knowing that at the hardest time in their life they will think of others and donate their child's organs.  Without people willing to donate, Hope will eventually pass away.  She is stable right now, but there is always the probability that her heart will get worse and that more medical intervention will be needed.  There are still many options that allow us to wait for the perfect heart, but it is scary.

We are so blessed to have medical care so close to home.  I have met so many people while we have been waiting that travel so far for the excellent care at the Cleveland Clinic.  My friends and family are able to visit and so many do visit a lot.  We are so thankful for the great friends we have met and our families have provided so much for us.  I can't imagine how difficult it would be to travel across the country or world and be away from friends and family and wait for a life-saving operation.

I would love to thank everyone that has done so much for our family.  We are forever grateful for the food, presents, cards, and support we have received.  We are humbled by the outpouring of love for Hope and our whole family.  I wish I could express my thanks better because my heart is so full of gratitude and love for everyone.  You mean the world to our family!

Mother's Day

I wanted to share this poem from Stephanie Husted because nothing I can write today will be as eloquent as this poem:

This is for the Mothers...
(Each mother that I've known)
Whose greatest hope was someday
To have children of her own.
For the ones who proudly rocked their dolls
And kissed them each goodnight
This is for the Mothers
Who were told,"Something's not right."

This is for the mother
Who when faced with such a trial
Sits beside her child's bed
Just praying all the while.
For moms who learned of patience
In ways that no one should
For mothers who know firsthand
Life isn't always good.
When dreams of all the "oohs" and "ahhs"
As doting friends arrive
Become instead...a battle
To help their child thrive.

This is for the mothers
Who refuse to sit in silence
Advocating for their child
With constant love and guidance
Appointments fill their busy lives
It's time to go again
With feeding pumps, and specialists
A tank of oxygen.
As people stop...to take a look...
Just wondering...what's wrong?
I've seen that look, a hundred times
"You must be very strong".
The oohs and ahhs don't matter
Now life seems much more clear
I'm lucky I'm his mother....
I'm blessed to have him here.

This is for the mother
Whose shaking hands release
The child that she loves so much
(And then she prays for peace)
"We will take good care of him"
The nurse says carefully
This mother's thoughts are simple
"Lord bring him back to me.
His life no longer in her hands
She wonders what's in store
This is for the mother
Who has walked this road before.

This is for the mother
Whose worst fear comes to light
"We're still not certain what went wrong"
"We'll watch her through the night."
For mother's who sit powerless
Praying...please let her survive
For mother's who go on somehow
When their miracle doesn't arrive.
As some wake up on Mothers day
To kisses, cards and laughs
Others have just memories
and well worn photographs.

This is for the mothers
Who knows that it's a treasure
To have a child...love a child
There is no greater pleasure.
For runny eggs and blackened toast
Arranged upon a tray
With a bunch of wilted dandelions
"Mom does it taste okay?"
For every busy restaurant
And every crowded mall
The words...."I love you mama" are...
The greatest gift of all.

~Stephanie Husted

Goodbye for Now Grandpa

Today my grandpa passed away. He was a good man and had a great heart and a beautiful spirit.  I only have one grandparent left and I am sad. It is really hard knowing that my kids will not be able to grow up with my grandparents.  I love them all dearly and will miss my grandpa so much.

John Vernon Wiley, Sr.
Born in Toledo, OH on Nov. 30, 1919
Departed on May 8, 2014 and resided in Owensboro, KY.

Service: No Service

Cemetery: Toledo Memorial Gardens

John Vernon Wiley, Sr., 94, of Owensboro died Thursday, May 8, 2014, at Signature Healthcare at Hillcrest in Owensboro. He was born November 30, 1919 in Toledo, OH, the son of Ora May Yarrick and Steven Wiley. John married Marilyn Ann Post in Mobile, AL where he was stationed in the Navy during World War II. During the war, John was a pilot in the Navy where he was in the reorganized Torpedo Squadron Eight. He received his wings August 1, 1944. After the war, he stayed in the Naval Reserves. John returned to Ohio where he and Marilyn made their home in Adams Township, which is now part of Toledo. Upon moving to Adams Township, he drove a school bus, farmed, raised laying hens, sold eggs and worked as a propane serviceman. He retired from Cal-Gas in 1982. John was active in the community. He was elected to the Adams Township School Board where he served as president, was chairman of the Republican party of Adams Township and was a ward committeeman. John was a member of American Legion Post #553, and was on the Adams Township Volunteer Fire Department. The family was members of Epiphany Lutheran Church.  He and Marilyn had three children, John Junior of Owensboro; Anne (Jeffery Mitchell) of Middletown, OH and Ruth Wilson (Harold) of Owensboro. John and Marilyn bought a home on Lake Erie in Luna Pier, MI where he enjoyed his favorite pastimes of fishing and boating. Family and friends enjoyed the place at the lake and many of the grandchildren learned to fish and ski with Grandpa. Upon retirement, the couple bought a motor home and traveled the country, seeing lots of sights, meeting many new people and eventually leading them to Florida where they purchased a home. John and Marilyn then spend the summers in Luna Pier at the lake and the winters in Florida on Easy Street in Palmdale, FL. You could find him reading a good book, doing crossword puzzles or listening to the McNeil Lehrer report to keep him current with the politics of the nation and state. Family can remember his wise counsel especially reminding that "fresh air and exercise" are the ways to improve sickness and keep one healthy, which he practiced daily. John and Marilyn moved to Owensboro, KY after selling their lake home. Preceding him in death were his parents, and a sister, Janet Beidleman. In addition to his three children, John leaves six grandchildren, Elizabeth Eisenmann Thompson (Mike) of McGaheysville, VA, Phillip Eisenmann (Danielle) of Gilmanton, NH, Marilyn Amantea (John) of Brook Park, OH, Paula Wodzisz (Gerald) of Medina, OH, John Wiley, III of Cleveland, OH and Morgan Wiley of Owensboro; five step-grandchildren, Sheena Purcell (Pat) of Owensboro, and Kris Mitchell, Erin Waller (TJ), Adam Mitchell, and Sara Johnsen (Ryan) all of Ohio; eight great grandchildren, Michael and Annabelle Eisenmann, Dominic and Amanda Amantea, and Destiny, Jerry, Paul and Hope Wodzisz; eight step-great grandchildren, Candice Fenton, and Hannah and Kirstin Brown all of Owensboro and McKenna, Reagan and John Waller, and Lillianna Johnsen all of Ohio.

John will be buried in Toledo Memorial Gardens. A memorial service will be planned in Luna Pier, MI at a later date. James H. Davis Funeral Home & Crematory in Owensboro, KY is in charge of arrangements.

2 Months In Patient and 40 Days on the List

Hope has now been in patient for two months and on the list for 40 days.  I am surprised at how comfortable she is in the hospital.  I was expecting a really rough time when we were planning the Fontan for this summer.  I thought she would be scared, angry, and grumpy during the whole hospital stay.  At two months, she is doing so much better than I expected.  She is up and about, playing, making friends with lots of nurses, doctors, and various other people that stop by to visit.  She is still pretty shy around people she doesn't know or people that come in to talk to her.

Another surprise is my own attitude.  I was awful during prior hospital stays and hated every minute that we spent in the hospital.  Little things got on my nerves before and I would be grumpy most of the day.  This hospital stay is different for me too.  I know we are going to be here for a while, so I am making the best of the situation.  I am able to work in the room during the day and part of the night.  I take a few breaks from work to take Hope to the playroom...once in the morning and once in the evening.  I don't get mad about much at all and I appreciate everyone so much more than I did before.  The staff is awesome and tries to make life a lot easier and I appreciate all the little things they do for me.

I have learned so much in these last two months.  I have learned to lean on other people when I need help and a shoulder to cry on.  I have learned that people love to do things for other people...this is something I have done, but I didn't realize there were so many awesome people out there.  I am overwhelmed by the support we have received from family, friends, and strangers.  I don't think THANK YOU is enough for all the support, but know that our whole family THANKS YOU for everything!!!

Dr. Boyle (Hope's new doctor because she is in heart failure and waiting for a transplant) is in Italy this week for his wife's birthday...what a great guy!  We have been told many times that hearts seem to come available when Dr. Boyle is away.  I don't know how true this is, but I am hopeful that her new heart will arrive at the perfect time.  I am kind of hoping it will not become available until after Mother's Day.  I would like to think that the donor family will spend a great Mother's Day together.  I think about the donor family all the time and know that they will be making the most difficult decision of their lives.  I know it is a decision that cannot be easy to make and I hate knowing that another family will have to make this decision for Hope to live.  Please keep the donor family in your prayers as well.