You are currently browsing the tag archive for the ‘baby’ tag.

This does not include all the pages and links posted–And it’s also not necessarily in order. (If you come across any dead links I would really appreciate knowing about them.  Please use “contact” form.  Thanks!)

Dekar’s Obituary and other SAMPLE INFANT OBITUARIES 

Dekar gave us a lifetime of Love during his short time on earthwhat I sent out to inform people of Dekar’s birth and passing–it’s his story, in a nutshell.

Babies with Trisomy 13 or 18 (Dekar is included)YouTube video made by NILMDTS with images of T13/T18 babies

Slideshow of our time with Dekar, courtesy of Now I Lay Me Down to Sleepthe slideshow made for us by NILMDTS.  Danielle Felton took the pictures and Christine Barrack made the slideshow. 

“Dekar Day”–the 27th of every monthhow we remember Dekar on a monthly basis

Praying for a Miracle; Planning for a funeralhow I continued on after Dekar’s diagnosis and the plans I made for his arrival and passing.  This is not what a pregnancy is suppose to “look” like.   I also talk about regrets I have, the grace I gave myself,  and what I wish I could do differently.

My Experience with NILMDTSI had never heard of Now I Lay Me Down To Sleep before-so I wrote about my experience with them so others would understand them a bit more from a parent’s perspective.

The Heavy Burden of Empty Armswhat others don’t see when they look at me….

A Full LifeDekar had one!

Dekar’s Memorial Ornament, 2008 and 2009

HopeLink to Steven Curtis Chapman’s song WITH HOPE, along with lyrics.  It’s a beautiful song that I discovered soon after finding Dekar’s first memorial ornament.

A nurse’s thoughts and perspective on the birth of Dekar–my main nurse graciously shared her thoughts and gave me permission to share them.

Forever an infantas my other children grow, Dekar remains forever an infant

Dekar’s Name in the Sandone lady’s mission to help remember other babies who died too soon.

My Mom, A Pair of Shoes, and other poemsI just like these poems–I am adding as I find them.  Updated 11/06/11

I guess…some people have never said anything about the passing of my son…..

Dekar Day, another loss, faithful friends, and a random act of kindnessthe title just about covers it

Bittersweet milestone

First Mother’s Day without Dekar

The babies that were meant just for me

Happy Birthday, DekarDekar’s first birthday a small pictorial tribute to his short life

I Miss Dekar

Dekar’s Foot Impression and 3d Foot and Hand molds and another memory item

Strength–Coping with the very end result of the “Incompatible With Life” diagnosisthe hardest part was not knowing if I could handle holding my deceased infant son. 

Smiling for SharonSharon’s daughter, Charlize, was diagnosed the same as Dekar–hypoplastic heart and Trisomy 18.  Charlize blessed her family with 58 days!  She is a beautiful little girl and I’m so glad Sharon shared her life with me.

The Mourning Boothnot sure what to say or do for somebody who is mourning?  Watch this. 

A Pleasant Reminderone small effort is forever ingrained in my memory as one of the kindest actions I have ever experienced in my life.

Still Making Memoriesa memorial snowglobe created by a talented photographer/friend.

Dekar’s 22nd month in heaven–a letter to Dekar

Final Diagnosis–Trisomy 18the email I sent to family and friends to relate the news of our baby’s Trisomy 18/hypoplastic left heart diagnosis 

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When I was pregnant I was active on a pregnancy board with other ladies due the same time as me.  I visit the board occassionally and keep up with some of them who have blogs.  

I see the pictures of their babies and how cute they are.   It doesn’t bother me to see the pictures, because I am truly happy that they have healthy little babies to hold and love.  I’m happy they got to take their babies home.  But at times it hits me that the pictures of Dekar that I have are the ONLY ones I will EVER have.  He will forever be that little infant…..it’s like part of my life is fragmented off because as my other children grow older, Dekar will always remain an infant.  It’s just weird.

Dekar would eight months, and I love that age.  They really start taking on more of their own attitude and personality.  They smile a lot.  They are a bit easier to care for because they can sit well on their own and entertain themselves.

A few days ago I was sitting on the couch with my son, Mel (4 yo).  I told him that we’d get to have ice cream soon for Dekar Day, and that Dekar would have been eight months old. 

“If Dekar were alive he would be driving you a little crazy, Mel,  because he’d be getting into all of  your toys.” 

“Yeah,”  said Mel, “But he could play with them!” 

“Yes, he could.  And I bet he’d try to chew on you— and drool, too!”  Mel’s eyes brightened up and he giggled after he thought about that for a while. 

“But he could play with my toys, and that would be nice!” 

Yes, it would.  But, Dekar isn’t here to play with toys, chew on his brother, or drool on his clothes.  I do notice that Mel’s eyes brighten up when we talk about Dekar.  Although I am not sure any of my kids understand the importance of Dekar Day, I do hope that it becomes so ingrained in them that even when they are off to college, get married, and have kids of their own, they will pause on the 27th of each month and eat some ice-cream in honor of their brother who is forever an infant.

Rachel holding Dekar with Mel looking on.

Rachel holding Dekar with Mel looking on.

I had never heard of the Now I Lay Me Down To Sleep Foundation (NILMDTS) before Dekar’s diagnosis.  After I had shared the news with some friends a few of them mentioned NILMDTS’s work.  Honestly, my brain was numb.  I put it on my list of things to think about, and left it there. 

After some of the fog cleared, I inquired again about NILMDTS.  Some people couldn’t remember the name, but knew there was a group of volunteer photographers who will take pictures of your baby who died too soon.  Another lady could tell me that the name was a children’s nursery rhyme or prayer.  Finally, I got the the full name and was informed that they had a website.

I did a search,  entered the website, and that was as far as I could go.  The pictures that are displayed on the main page took my breath away and brought tears to my eyes.  The pain was too close to my heart, as these were photos of people who have already lived what I would be going through. 

I did a search for a photographer in my area, and unfortunately, there was nobody nearby who signed up for the hospital I would deliver.  I then hit the “contact us” button and typed this letter:
“Hello,

I was referred to your site. 
The closest photographer I see is in ____, and from his profile it appears he only services that area hospital.  (We are about 50 miles away from ______.)  Our zip code is #####–we are a smaller community, but I would still like to see if somebody might be available to do a photo session. 

If you are needing to know—my child was diagnosed with Trisomy 18 and will likely die before or soon after birth.   My original due date is July 1, but this could happen at any time.
I have eight other children and I am wanting to do all I can to make memories for them.
 
Thank you for any help you can give me,
Marge
phone number”


I didn’t know if I’d hear back from them.  I couldn’t look beyond those first two pages on their website to find out more about the organization, and I didn’t know what to expect.  But experience has taught me that it didn’t hurt to ask.

I don’t know why I did it, but after emailing them, I emailed the local radio station that mostly focuses on stories of local interest.  I suggested they research the NILMDTS site and consider getting the word out so that more local photographers would consider getting on board.  I knew if I was a photographer I would do it, and I assumed there were others who would also.

After that, I made plans of calling a friend whose husband used to be a photographer.  I would call her to see if he would be willing to come to the hospital if a NILMDTS photographer was not an option.  Time was of the essence—I could lose Dekar at any time.  I wanted to be sure I got some excellent photos in some way, shape, or form.

Not more than four hours after sending the email to NILMDTS headquarters I got a call from a photographer with a sweet voice.  She introduces herself–her  name is Danielle Felton and she said the NILMDTS headquarters called to inquire if she would be willing to do the session.  She called me directly to let me know she’d be happy to.  I asked how far she’d be driving and she said it’s about two hours. I was so impressed at the quick reply and the willingness of Danielle to drive such a distance to do this for my family and me.

She also offered a maternity session.  That was an unexpected blessing.  She came over and was very comfortable with my house full of children.  I found out she came from a large family herself, so she wasn’t scared.  🙂

A few days after contacting the radio station both Danielle and I were asked if we would do a short interview on the air.  Both of us agreed.  I told them my story, why I would be using the service offered, and why I felt this organization needed exposure in our area.  Danielle was able to share her experiences and let them know that more photographers were needed.  (Edited to add, that photographers are STILL needed in our area and many others.)

Danielle and I kept in contact.  She knew that I could give birth at anytime to a still baby or that I could be holding a live baby after birth.  After I decided on a c-section, I told her the date, time, and that the staff knew she would be there.  I saw her photography work and I knew she was very capable of doing a lot–but I told her I really wanted memory pictures. The artistic stuff didn’t matter as much–I wanted pictures of each of the kids holding Dekar as well as family pictures. She honored my request, and threw in her creative work as well.

I felt a bond with Danielle. Maybe it’s because I was letting her “into” a very personal part of my life–and I have become a very private person. The day that Dekar was born I could see that Danielle was doing her best to respect the situation–and with eleven people in the room (my family), plus the nurse(s), she really did well to manuever around and take pictures and capture memories. I still can picture her moving around and asking me if it was okay to do this or that….Even though I was focusing on Dekar and my family, I was also aware of Danielle and that she was doing this out of complete selflessness. She was taking time from her own family to be with us. As a mother (and a human being), I appreciated that so much.

I also grew a bond with Christine Barrack, who put together the slideshow which you can view here. I felt she really put her heart into making it as beautiful as she could. The placement of the photos, the seamless transition of the music; everything in the show conveyed a sensitivity.

It was as if both of them were thinking, “If this were me, what would I want to see? How can I be the parents’ eyes and capture the moment/life to the best of my ability?”

So, that’s my story and my experience with the Now I Lay Me Down To Sleep Organization.

Danielle and Christine will forever take a special place in my heart and life.  This organization is what it is because of each individual photographer and volunteer–and if they only had Danielle and Christine to represent them, they could be proud.

The day I post this (09-27-08), Dekar would have been three months old. I am so thankful that I have beautiful photographs to look at and remember the life I held for only a short time.  The photos capture his uniqueness, his beauty, and the strength that he gave us for those eight hours on earth.  I am forever changed because I held a lifetime in my arms.

Thank you, Danielle, for giving of yourself and your time.  Thank you, Danielle’s husband and children, for letting your wife and mother go for the day to help capture lasting memories of a life that was too short.  Thank you for letting her work on presenting us with a wonderful picture cd and slideshow full of memories.

Thank you, Christine, for working with Danielle to produce a beautiful slideshow that brings tears to my
eyes and a smile on my face. 
 
Cheryl Haggard, extending a “thank you” doesn’t seem appropriate.  You and your husband lost your precious son, Maddux, and that is not something to be grateful for.  But using your experience as a catalyst to start Now I Lay Me Down To Sleep shows what a beautiful heart you have. 
 
Sandy Puc’, thank you for sharing Cheryl’s vision and giving of your time and talent to work with other photographers to ready them to do this precious work. Because of you and all of the other photographers and the volunteers who give of their time and talent, parents can heal and remember the life of thier child that was taken too soon.
 
Losing Dekar was the hardest experience of my life.  Although I left the hospital with empty arms, my heart was full, knowing that God had been with me through the whole thing.  In His graciousness and mercy, He extended His love to me through the giftedness of Danielle’s photography and the whole Now I Lay Me Down To Sleep organization.  For that, I will be eternally grateful.

Another version of the slideshow is here.  (You may need to download and/or accept ActiveX.)  It is the original and much cleaner/sharper looking. 

Thank you Danielle Felton  and Christine Barrack for giving of your time and talent.  Your sensitivity, kindness, and compassion will never be forgotten.

 

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