In Memory of Delainey Belle

Whenever I see a butterfly, I say hello to Delainey Belle.  My grandniece, Delainey, was born November 15, 2010September Delainey Belle Picture. Sadly, she left us five years ago. Time moves too quickly.

My memories of this beautiful little girl began seven years ago about this time. I was introduced to her in the NICU at the local hospital where she was born. My heart melted when I held this beautiful little girl with ten tiny fingers and ten tiny toes for the first time.

This sweet little girl was born with Trisomy 18, a chromosomal abnormality, and had major obstacles to face. Although Delainey had a physical abnormality, I prefer to focus on her above normal spirit of perseverance, strength and love.

This girl had the will to withstand numerous hospital stays and the strength to endure the poking and prodding from strangers and endless tests.

She magically sprinkled love, togetherness and unity whether in her home or wherever her mom and dad took her.  She brought her Mommy’s and Daddy’s friends and family together.

We felt a wise old soul inside her small body as she communicated her love, joy and understanding through her eyes.

Thankfully Delainey Belle has never totally left us, and she will forever be remembered. My favorite pictures of her are when she is speaking to us through her eyes.

 

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Good Old Summer Time

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It’s summer! And every year we welcome it with open arms! Many of us live busy lives and in between work, home, travel and scheduled events the summer passes by too quickly. Often times I wish for the long, lazy days of summer past.

I remember the long summer days back in the 1960’s when it seemed like summer lasted forever. Life was easy and days were long. As children, we didn’t have as many structured activities, and we took it upon ourselves to find things for us to do.

We didn’t sleep late and rarely stayed inside the house. There were many days we left the house in the morning to meet up with friends to ride bikes or go to the park. We came back for lunch and then would head back out again until dinner time.

We had hot days with no air conditioning. I remember endless hours reading in front of an installed window fan trying to cool off with the hot air blowing on me.

There were times, however, that we had absolutely nothing to do and that forced us to lay in our backyards looking up miles into the sky at the clouds thinking and dreaming. We didn’t have technological devices or any social media so there were days spent sitting in my backyard reading or drawing.

On Dad’s day off we took day trips to Chicago to sight see and visit museums and zoos. We spent quite a bit of time relaxing on Indiana beaches and hiking trails at the Dunes.

Perhaps this summer I will set aside my busy schedule and limited time and force myself to experience again a long, summer day relaxing, reading and sitting back to stare up into the clouds.

Pull out your laptop or grab paper and pen and start Keeping Your Memories of your childhood summer days by starting with the questions below:

  • What is your favorite childhood summer memory?
  • What did you do to entertain yourself when you were bored?
  • After chores were finished did you meet up with friends and hang out with them until dinner time? What games did you and your friends play?
  • What were your family’s traditional summertime events and/or vacations?
  • Did you ride your bicycle during the summertime? Were you allowed to ride your bike long distances from home?

http://www.keepingyourmemories.com

March is Trisomy Awareness Month

2013-10-19

March is Trisomy Awareness Month. Alas, I have been knowledgeable of Trisomy 18 for close to six years because of the birth of my grandniece Delainey Belle.

In August 2010 my niece shared with us, “My unborn daughter has been diagnosed with Trisomy 18…it is a fatal chromosomal defect…if she makes it to birth she will not live very long. I will be thankful for every moment with Delainey Belle!!!”

Trisomy was a foreign word to all of us, however, too soon did we come to know Trisomy 18 is a genetic chromosomal disorder which occurs in approximately one in every 3000 live births. Most of these babies die before birth and those who do make it to birth typically live only a few days. However, less than 10% of babies live at least one year. There was much sadness learning that my niece’s baby wasn’t expected to live more than one week.

Delainey Belle was born on November 15, 2010. It was a day of joy and celebration of her birth mixed with fear and sadness that she may not be with us for long. However, she came home from the hospital fourteen days after her birth and her days expanded into weeks and her weeks expanded into months.

This little girl couldn’t speak, but you felt her share her soul when she deeply stared into your eyes and felt her love when she reached her little fingers to your cheek to stroke it. Delainey Belle knew how to communicate and share her love.

Delainey’s parents, grandparents, extended family and friends were so thankful that Delainey Belle was a fighter. Her strength and defiance of dealing with her Trisomy 18 condition helped her beat the odds and statistics that were against her.

She was with us for only twenty-three months and one day as she passed on October 16, 2012. But in that short time she touched an extraordinary amount of lives and continues to bless many of us with the precious memories of our times together.

Delainey Belle has taught us the value of life and what is truly important to happiness. She was given love, devotion and commitment from her family and in return she gave us twenty-three joyful, priceless months of enriching our lives with her beautiful spirit.

If you have a loved one that you have lost, grab your laptop or pen and paper and start Keeping Your Memories of that loved one. It is a helpful therapy while you are grieving.

  • What legacy did he/she leave?
  • What special moments did you share with him/her?

 

 

 

 

Preserving Cherished Moments

 

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I have journaled my existence since I was a teenager. I wrote about high school friends and sweethearts, family, God, college, marriage and infertility. But the day came on June 16, 1986 when I opened up a brand new journal filled with fresh, clean, empty pages to start recording my experience and elation of finally being pregnant with my first child. Twenty-nine years later I pulled out that book from my closet shelf, blew off the dust and carefully opened up the cover so small papers that were tucked between the yellowed pages wouldn’t fall and began reading the pages . The first entry read:

“June 16, 1986:  Dear Baby – I always said that when I get pregnant I would start a journal for my little one and give it to him or her when he or she gets older. Hopefully I will keep this book filled with memories for you to always cherish and to pass on to your children. Well, tonight I finally was able to get in the doctor’s office and take the pregnancy test. It was positive! We are so happy that we are going to give birth to you. Babies are a gift from God and we praise Him and thank Him for this gift.”

My little baby finally arrived, and I was extremely happy and thankful that I had a baby girl. Twenty-nine years ago this evening I wrote:

“February 23, 1987:  Dear Joanna May – You have finally arrived! You looked beautiful after you were born. We can’t believe that you are finally here. You were born at 10:03 a.m. and weighed 8 lbs., 12 oz and 22” long. You were born with your big dark eyes wide open and born with dark brown hair.”

That evening I continued writing to my daughter about the entire day and what I experienced delivering my first child and how I fell in love with her.

Days and months passed quickly, but I would write entries for this precious baby about her monthly doctor visits, who came to visit her, and every milestone in her life. I shared with her how I was feeling, what I was experiencing, and how much I loved being a mother. That book filled quickly and I began another but eventually three children later,  all of us growing older, becoming busier and having less time the pages didn’t fill up as quickly. But I know that what I did write will preserve the memories of my daughter’s birth for future generations to read.

One day I will have grandchildren and they will read how excited I was the day their parents were born. I definitely would have cherished reading my mother’s and my grandmothers’ emotional and physical experiences when they were pregnant.

Now is the time to start Keeping Your Memories of your newborns and children.  Open up your laptops or grab paper and pen and start recording the precious moments, love and adoration you have for your children.

http://www.keepingyourmemories.com

 

 

A Time I Can’t Remember

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I have been an adult orphan for the past seven years. Yesterday Mom (who passed in January 2009) and Dad (who passed in 2007) were on my heart and in my thoughts while spending a wonderful day celebrating my birthday with my husband, daughter and sons. I especially missed my mom. Even yesterday, with her passing almost seven years ago, I cried and I missed her.

I was mulling over how Mom must have felt the day that she was in labor and gave birth to me. I wish she had recorded in writing when she started having her contractions and the entire experience. Was Dad home to take her to the hospital? What did it feel like at that time to give birth and not have Dad with her during the delivery as was the typical case at that time? How did she feel delivering her fifth child? I would have loved reading today what her dreams for me were that day.

As a mother myself, I can easily envision my thirty-one year old mother holding me, kissing me, and loving me. Being born two days after Christmas Mom always told me that I was the best Christmas present she ever received. They were delighted to have a daughter added to their family of four sons.

I do have pictures (and Dad bought colored film for these pictures) of Mom and Dad holding me when I was an infant fifty-six years ago. And I’m also fortunate to have a copy of our silent 8 mm home movie (converted to a DVD) that my dad taped on Christmas Eve of Mom when she was nine months pregnant with me. She looked young and slim, other than her stomach, and she was admiring the homemade gifts that her sons (ten, eight, six and three years old) had made for her.

With the holiday season we miss our loved ones even more. And I felt it yesterday on my birthday. But I still had a terrific day because I feel my mom is with me wherever I go. There is not a day that goes by that I don’t think about her. With the cycle of life I also had a new generation, my adult children, to spend time with and enjoy life.

Now is the time to start Keeping Your Memories of the day that your child was born because that is one day that he or she will not remember! Pull out your laptop or grab paper and pen and record in writing the emotional experience you had that day. One day your child and his or her descendants will cherish reading your memories you have on this special day.

  • When did you start having contractions?
  • Did you deliver the infant at home or at a hospital?
  • Who took you to the hospital and what was the story behind the transportation?
  • Share the emotional feelings you felt when you saw your infant for the first time.
  • What prayers or wishes did you have for this newborn child?

 

 

A Mother’s Graduation…

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Yesterday I watched my son (pictured on the right) receive his college diploma. All graduations are special but this one was extra special as it was a moment of completion, perhaps my graduation also, as now all three of my children have finished their college education and my mission of raising my three is fully complete.

As the noted speaker was giving her commencement speech, my mind wandered reflecting on my twenty-eight year journey raising my one daughter and two sons. I fell madly in love with my newborns, adored my toddlers, was delighted with my young children, annoyed with my middle schoolers, aggravated with my high schoolers, and today respect and love my adult children.

As infants, my children were completely dependent on me to feed them, clothe them and love them. I was in love with these angels and was full of joy with each accomplishment when they rolled over, sat up, crawled, cut their first tooth, walked, and spoke their first words. My heart was filled when my babies reached their little dimpled arms to me wanting to be held and snuggled to fall asleep in my arms.

1992-07 Joanna, Michael and Jeff

The first days of kindergarten came too quickly for each of them. I was excited for their milestone, but as I watched them board the school bus and see it pull away, they would look out the window and wave. I smiled back waving holding back my tears. And when each one arrived home from school they would jump off the bus and run into the house excited to tell me everything that happened that morning in their classroom.

I attended my children’s first school concert proudly watching them and snapping endless pictures. The next few years my children were away from home with their first sleepover with a friend and eagerly picked up in the morning. My children grew and were learning to be independent but even still were willing to curl up in my lap before bedtime. As I saw each one sleep, I could still see the baby in each of them.

Then came the first day of middle school, and I started to feel the sting as the apron string was being snipped. This time they got on the bus and still looked out the window, but only smiled discreetly and for sure wasn’t going to wave. The school day was over but not coming home on the bus due to after school activities and now needed various pick up times to be set. What hadn’t changed was that I still proudly watched my children participate in multiple sports and school choir events. At this point each was spending more time with friends and sleepovers turned into hanging out all day with their friends. Now I was given a quick kiss and hug as long as it was in the privacy of home and no one was watching.

The next phase was the toughest as the apron string was close to being completely cut. On the first day of high school my children were riding the bus and now not even looking my way to acknowledge me. They were coming home late from after school sports and activities but didn’t need a ride because they would find their own means. They now had their first job and activities were now scheduled around work and school. They earned their first driver’s license and now no longer needed me for transportation. I was no longer top priority nor the most important person to them on their list and they started having relationships with others, dates and proms.

They began looking at colleges, were excited for the future and gave minimal information. But it remained strong that I still proudly watched my teenagers play in their sports and sing in the school choir. And at this point, if it was necessary, they gave me a kiss.

There was a mix of sadness and excitement dropping my children off at college and an emptiness coming home to their empty bedrooms. There were no more bus rides, no after school activities, however, I did start to hear a little bit more from them as they adjusted being on their own. It was wonderful to see how their learned life skills helped them adjust to being independent. They met new friends and had new experiences. Now they kissed and hugged when we saw each other again and when going back to school.

Yesterday I cried and was extremely proud to see how my son has transformed into a handsome man shaking hands and accepting his degree. I had to wait until the formalities were done and the ceremony was complete before I could congratulate him. When we saw each other in a crowd of people, he reached down to me and gave me a hug and a kiss.

My mission is complete with my three adult children. I am looking forward to the next stages for my three adult children as they have begun their lives on their own and praying that it will be years of joy for them.

What memorable times do you have of raising your children or someone that you have mentored? Now is the time to open up your laptop or grab paper and pen and start Keeping Your Memories of the memorable times you have had with them.

http://www.keepingyourmemories.com

Balloons and Butterflies – A Tribute to Delainey Belle

2015-10-16

It was October 16, 2012. I will never forget that day. I was at work and was rushing to wrap things up because I was leaving early to attend the Association of Personal Historian conference in St. Louis that week. Unexpectedly, I received the phone call from my nephew that afternoon that I will never forget.

My twenty-three month old grandniece had left us. Christy and Tim’s daughter, Delainey Belle, was born on November 15, 2010 with Trisomy 18.  This chromosomal condition was diagnosed before her birth. They were told that it is a fatal condition with most of the babies dying before birth and those who do make it to birth typically live only a few days. And less than ten percent of babies with Trisomy 18 live at least one year.

Delainey Belle had been defying the odds given her. As time passed and her extensive care had all been put in place, her mom eventually returned to work. But fortunately on this day her mom was scheduled off. She loved Delainey Belle to the moon and back and was with her from her first breath to her last.

That day I went on to the conference and while hearing the importance of preserving priceless life stories, I was inspired to create a memorial book for Delainey’s short life. At dinner that night I shared with fellow personal historians about this precious child and was given suggestions on how to create it. I left the conference early to attend the wake and funeral.

The tributes started pouring in from family and friends. It was amazing to read the tributes of how Delainey Belle touched so many lives. The most common words used in everyone’s writings were: love, thankful, blessing, smiles, hope, and inspiration. We easily found pictures of everyone holding Delainey and smiling at her and was able to match them with their tribute. The love was shown in those pictures with the eye contact Delainey shared with all who met her.

Christy wrote this poem and read it at the funeral:

Delainey Speaks

Even though you think you shouldn’t,

Laugh anyway, it makes me smile.

Even though you can’t carry a tune,

Sing anyway, it calms me.

Even though you think you can’t,

Try anyway, I always did.

Even though people say you won’t,

Do anyway, I proved them wrong.

Even though you may have obstacles,

Overcome them, I was able.

Even though you have tears,

Shed them anyway, I had to.

Even though you think you can’t,

Live anyway, I did.