Just wanted to clarify a couple of things as well as provide you with directions to the locations for events on Sunday.  We sincerely encourage all who can to participate in all three events Sunday afternoon.  Such a huge part of Haven was and always will be the lives she has touched, and we want nothing more than to spend the afternoon with as many of those lives as we can.  Each of the events will be unique from another, so please know that everyone is truly welcome and encouraged to attend them all. 

**Times and locations can be found in the previous post entitled “Funeral Arrangements”**

The funeral services are graciously being provided by the wonderful people at

Needham, Storey, & Wampner Funeral Services
1341 N. Baldwin Ave.
Marion, IN  46952
866-664-5030   

Though none of Sundays events will take place at their chapel, they have been wonderful in helping us to plan the afternoon.  They, also, can be contacted directly regarding any of the details.

Please click the “Read the rest of this entry” link to view directions to the cemetary> Read the rest of this entry »

Please Join Us to Honor and Celebrate
the Life of Haven Leigh
on Sunday, May 27th 

Viewing at Grant Memorial Park
1606 W. 26th St.
Marion, IN 46953
1:30pm until 2:00pm

Burial Service at Grant Memorial Park
2:00pm until 2:30pm

Memorial Reception
College Wesleyan Church
 Marion, IN
3:00pm until 4:30pm

Maps and Directions to these events will be posted on the website soon

 

We are so blessed to know that Haven’s life has touched so many people, and we are looking forward to Sunday’s events as a tribute and celebration of her precious yet impactful life.  Her family would be greatly honored to have the presence of anyone who has been following Haven through her adventures.  There were many people who never got the opportunity to meet Haven personally, and it would mean so much to us to have you take part in the culmination of her life no matter how well or little you feel you know us.  We sincerely invite each and every one of you and your families to join us for Sunday’s events.  Even though most only knew Haven from a distance, you are all very close to our hearts.  It will be so special to have you there as we lay Haven’s body to rest and then to join in fellowship to remember her together and celebrate her promotion to glory. 

As an additional tribute to Haven, we are collecting statements and testimonies of how different individuals have been touched by Haven and her journey.  For those attending the services, there will be an open opportunity to briefly share your thoughts about Haven’s life if you so desire.  For those who are unable to attend or would rather not speak, we would love to receive emails or comments to collect as a memento that would be displayed and shared at the Memorial Service and Reception.   

As our needs have been continually met by the generosity of many friends and family, we will be accepting memorial gifts to the Haven’s Heart Fund.  Reflecting back on our days with Haven, we would not trade anything for the opportunity and privilege we had to both be by her bedside each day of her life for nearly six months.  Your selfless gifts helped to make that possible, and the donations made to this fund are still being utilized to meet our family’s needs even today.  We would like to, in turn, eventually use any abundance to the Haven’s Heart Fund to aid in meeting the needs of other families who are dedicated to staying by their children’s side as they battle through serious illness at Riley Hospital for Children.  So, in honor of Haven Leigh, memorials can be made to the Haven’s Heart Fund through this website, by mail, or at the Memorial Reception. 

We anticipate Sunday will be a joyful and tearful occasion as we gather to honor our precious daughter and give glory to God for the time we had with her and the amazing impact she had on all of us.  Your most beautiful comments and emails have already brought us much joy and solace these past few days.  She has been very close to many of your hearts as well as ours, and we hope that Sunday’s events will bring us all together to share in God’s comfort and peace through this bittersweet time.   

Looking forward to seeing you all soon,

Jeremey & Alison 

Today is the best day Haven has ever had.  For five and a half months our precious Haven Leigh overcame more obstacles than anyone ever deemed possible.  Last night, Haven decided her adventures here on this earth were through and journeyed on to meet God for even greater adventures with Him in eternity.  Her earthly body was not good enough for her anymore, and she is now clothed with a heavenly body that is more glorious than can be imagined.  She had a restful day yesterday, and we spent much time playing with her and enjoying her.  In the evening we gave her a nice bath, put her in new pajamas, tucked her in and put her to bed.  A few minutes later, as we were watching her sleep, she showed us that she was ready to go.  Her heart rate dropped dramatically and the doctors were unable to recover it.  We spent the rest of the evening holding her with no cords or tubes and loving her for the last few minutes of her life on earth.  She was in no pain and quietly drifted away to God.  We would have had it no other way, for all along we wanted it to be her decision when the right time was:  not the doctors’, not ours, but hers.  And so it was.

This precious life has touched us and countless others in powerful ways that, thankfully, give God the ultimate glory for the gift of life He has given freely to us.  We are incredibly thankful to have been able to spend each and every day of her life with her and take care of her the best we knew how.  She had much help through amazing medical professionals, powerful prayers, and love & encouragement from family and friends.  We will miss her terribly and shall never forget her.  We look forward to the day when we shall also meet God and see our little girl again. 

We have also been blessed so much by your love, encouragement, support, and prayers through this journey.  We are eternally grateful to you for your involvement in the life of our little family.  As final arrangements are still being coordinated, we will be sure to inform you all through this site about the details regarding them.  We certainly encourage you to post comments or send emails or other correspondence as you deem appropriate.  Please note that we will no longer be receiving mail sent to the Ronald McDonald House.  The website will remain open as a memorial to the precious life that God granted to us:  a life that has changed our lives forever.

“My flesh and my heart faileth, but God is the strength of my heart and my portion forever.” –  Psalm 73:26  

In Loving Memory of
Haven Leigh Johnson
12/12/06 – 5/22/07

The results from Haven’s kidney scan are just in…

She went downstairs this afternoon to Nuclear Radiology and had a radioactive material injected into her bloodstream.  The machine was then able to take pictures of her body as the material moved through her system.  On the monitor we could see that over time, the material started to collect in her kidneys and after about 40 minutes we could start to see some of it in her bladder.  We didn’t recall what the images looked like a month ago when she had a kidney scan, but the fact that some of the material had already made its way to her bladder via the kidneys seemed like a good thing.  Read the rest of this entry »

Although Haven’s streak of wonderful days has temporarily ended, she is still headed in the right direction.  She has been a little dehydrated the last couple days and we are working to get her fluids balanced.  We are still increasing her feeds a little each day.  We are probably half-way to full feedings and she is loving it.  Hopefully the nutrition will make her stronger and allow her to breathe better on her own.  Read the rest of this entry »

Haven slept very well last night.  She also slept most of the day today.  When she was awake, she seemed to us to be a bit lethargic and tired.  When her daily lab results came back this morning we found that some of her levels were a little off.  One level specifically caught some attention because it seemed so high.  Read the rest of this entry »

Haven has had a good couple of days.  Mommy & Daddy have probably been more busy than Haven has.  We have been meeting with doctors in order to devise a plan for more long-term care for Haven and her complex condition.  We are also seeking other opinions to be able to better clarify what is presumed to be a Mitochondrial Disease (this is a type of metabolic condition which we have been trying to diagnose and find an answer for for some time now).  Read the rest of this entry »

Haven took an afternoon trip downstairs to have her NJ feeding tube placed using realtime x-ray technology to watch the feeding tube move inside of Haven.  We were fortunate enough to be able to be in the room during the procedure.  It was very interesting, and as we heard the doc say, “Well, this is the first time I’ve ever placed an NJ down a person that also has a G-tube site,” we just smiled. Read the rest of this entry »

Haven continues to make baby steps in the right direction.  She had a good day today and enjoyed visiting with grandparents and other relatives for Mother’s Day.  Haven made a beautiful card for her mama with her footprint and handprint.  She also got all dressed up in her “I Love My Mommy” bib and pink bow.  Although she rested a lot today, she was awake enough to stretch and celebrate.  She was even able to come down on her ventilator settings a little bit!  Read the rest of this entry »

I must say that I am very joyful to be celebrating my first Mother’s Day tomorrow.  I have a beautiful baby girl (who is five months old today!) and a wonderful husband who bring me joy every day.  I can’t think of a better team to be part of through the ups and downs of life.  Read the rest of this entry »