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For the last several months I have been wearing a very special necklace that I picked out from JewelryKeepsakes.com.

I am not much of a jewelry person, so when I do wear something it is usually pretty special to me.

This particular necklace can also hold a small amount of personal remains of a loved one.

I have seen these before and honestly wasn’t sure how I felt about it.  But now that I have one I am very glad I own it.  It is my preferred piece of jewelry–It is stylish, well made, and nobody can tell what it holds inside.  Basically, it simply looks like a very pretty piece of jewelry.  Nobody knows it holds a small part of my son’s remains unless I tell them…and I don’t offer that information.
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The necklace came with a small funnel and toothpick to help the flow of ashes into the small opening.  I had no real issue with the process of filling the necklace.  If a larger piece of remain did not fit through the funnel I was able to push it out and try a different portion of ashes. The toothpick wasn’t extremely strong, though, and it did break.  That was the only issue I had with filling the necklace with some of Dekar’s remains.

The opening on the top of the necklace is closed with a little screw.  This shut tight since I was careful to not overfill.  Originally I did not use the adhesive product that was sent with the necklace. It seemed to me the screw was secure so I did not think it needed the extra adhesive. However, after wearing the necklace almost daily for a few weeks I found myself checking the necklace regularly, making sure the pendant was still in place!  I decided to buy some strong adhesive and securing the screw permanently. Once I secured the screw with some adhesive I feel more peaceful, knowing the pendant cannot accidentally come loose.

The chain itself is something I need to have fixed.  The clasp is very difficult to attach to the other end as the opening is quite small. I have contacted the company and was assured this can be fixed/replaced.  I just haven’t done it yet due to the craziness of life lately.

I really love this necklace and am so glad to own it. Even if I didn’t have some of Dekar’s remains in the necklace I believe it would be a favorite necklace because of the special picture of a mother cradling her child’s head.
As far as the service itself from JewelryKeepsakes.com, I couldn’t be more pleased.  The shipping was prompt and the communication was excellent.
(ETA after posting:  I just want to say that when I worked on this post it looked perfect as far as spacing, formatting, etc.  But once I published it the “perfect” look disappeared!  I don’t have the time or talent to figure out how to make my son’s memory blog look excellent all the time….but hopefully those who come here look beyond all of that stuff.  I just wanted to vent a bit because I find this VERY frustrating!) 
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Today is December 27th–Dekar Day!  Today Dekar would be eighteen months.  

Fortunately ice cream was on sale so I picked up four different Edy’s flavors: Berry Granola Crunch, Root Beer Float, Chocolate Peanut Butter Cup, and Mango.

A special thanks to the following for letting me know they are remembering Dekar with me:  Christine, Autumn and Jenny’s family, Sherri, and Martie.  Dekar Day calories don’t count. 🙂

I remember sitting in the hospital the day after Dekar was born.  I stared out the window while eating my breakfast. 

I wondered why Dekar had to die when so many babies were not wanted.  Why Dekar, when so many were not loved and cared for by their mothers.  As soon as the question entered my mind, a gentle voice said, “That is why YOU were chosen to be Dekar’s mother.  Because despite his diagnosis, I knew you would still give him a chance at life.”  Then I thought of what could have happened with Dekar, specifically,  if he had been one of those other women’s child—-and it stabbed me in the heart but then I was flooded with peace.  Even though I felt the loss deeply, that gentle voice answered the question of “Why my baby?”  Because Dekar was meant specifically for me.

Dekar was not just any baby–he was MY baby.  God gave him to me, knowing I would be the best mother I could for him.  No matter the outcome he would still be my son.  Would I have really wanted him to be somebody else’s–knowing that they would abuse, abort, or not care for  him?  No. 

I would never make light of the questions people ask:  “Why me, why my baby….why, when I wanted a baby so bad?”  If it were up to me NO babies would die or be hurt in any way.  But I’m not in control of any of that.   My recent miscarriage made no sense to me, and still doesn’t.  The first thing I did was throw up my questions to God: What was He thinking?  How could He allow this to happen?  Why?   I lost Dekar, why did you allow me to lose another one?

Even though I am not carrying that baby any longer and will never hold that baby in my arms, it doesn’t change that fact that I am still that baby’s mother.  I still held a life inside of me that was precious.   I still mothered that baby the best I knew how, just as I did with Dekar.  

I can be sad about the outcome, but I can also thank God He gave me a baby to love–a baby meant for me, and nobody else.

From April 27th, 2009

Today Dekar would have been 10 months old.  On my FaceBook account I simply typed out “Ice Cream”.  I knew what it meant, and it didn’t matter if anybody else did.

This time “Dekar Day” is hitting me a bit harder because I am also dealing with the loss of another baby. 

On April 8 I went into my first prenatal appt., very excited about the first ultrasound that I would be having with my new pregnancy. The due date would have been in mid-November.  As soon as Dr. Jeakle started the ultrasound, I knew something was not right.  He was humming—when my husband hums, I know that something is up—and the volume on the machine was not turned up so that I could hear the heartbeat.  I knew it was taking too long for him to find what he was looking for.  Long story short, my doctor saw the little baby just fine, but the heartbeat was not detected.   I was numb.  It was not what I expected at all.  Add to the frustration is the fact that the little baby measured perfectly—according to my date I would have been just over eight weeks along, and that’s how big the baby measured.  The baby’s heart may have stopped beating seconds before the ultrasound.

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I left that appt. not understanding anything any more.  I just looked up at God and threw Him some question marks. 

I had hoped to let the miscarriage happen naturally, but found the waiting to be harder than I anticipated.  It reminded me of the time I was waiting on Dekar to be born.  Even though I knew Dekar may not be born live, I had that tinge of hope to hang onto.  With this—-there was nothing.  I was just waiting for the inevitable.  Two weeks later, after no signs of miscarrying,  I requested another u/s and went home with the confirmed bad news–but still desiring to miscarry naturally.

I couldn’t take it.  Once I got home everything hit me hard again.  I called the doctor’s office and left the message that I am emotionally spent and didn’t know what I wanted.  The doctor called me back and was again very compassionate–he didn’t push me into anything and he let me make my own decisions through the whole process.  We scheduled a d&c, which was performed on Friday, April 24th.  I was not happy about it, but I felt it was better for me and my family to get it done.

Today I received a call from the hospital to see how I was feeling after the surgery on Friday.  My pain is keeping me up at night, so I did a follow-up directly with Amy, Dr. Jeakle’s nurse.   Pain meds would be ordered, and after talking “business” I asked if she had a Girl Scout, since I wanted to buy some cookies and didn’t know any who were taking orders.  Found out that ordering was over, but Dr. Jeakle’s wife orders extra.  Good.  At least I can get some Thin Mints and Samoas.

While in town to pick up the pain meds and ice cream treats for Dekar Day, I got a call on my cell–it was Amy, telling me the cookies were in.  That was quick, and such perfect timing!  I asked how much they would be, and she said, “Nothing.  I think you could use some G.S. cookies so we threw a bag together for you.” 

Indeed, she and some others at the office (I am not sure who) put together a bag for me—four boxes of Girl Scout cookies, other candy treats, and a candle.  It was a random act of kindness that meant more to me than they will ever understand.   They went beyond their “work” mode and treated me with a measure of warmth and friendship that I won’t forget.  It was just. so. nice. 

After I got home I plopped in front of the computer with a box of cookies…..(and those who know me know I am not sappy)—-I got a lump in my throat when I saw a bunch of my friends let me know that they had eaten ice cream, or planned on it,  in memory of Dekar.  Through facebook and email, I was told they remembered…..

Tonight as I eat my ice-cream with my husband, I expect it to have a whole different feel to it.  I will not only be mourning the loss of Dekar but also mourning the loss of a baby I never met, but desperately wanted to.   Maybe they are eating ice-cream together in heaven?…..

Before I go to bed I’ll look at my children and thank God for the gifts that He has given me.    And I will be sending up a special thank you to Him for putting people in my life who will show a random act of kindness and for all of the others that remind me they care—especially at a time when I needed it the most.

Click on the picture to see Dekar's memorial.
Click on the picture to see Dekar’s memorial.

to-write-their-names-in-the-sand-bu

 

 

 

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.

“Waiting for Dekar to be born, in the O.R., Dr. Mann, Sue, and I were aware that he had Trisomy 18 and a hypoplastic left heart ventricle.  We knew this meant that he would probably not survive for very long, or possibly not even be born alive.  His parents, Marge and Cortney, had known for some time about Dekar’s condition, and had come up with a very carefully thought-out birth plan.  Our priority as the health care team was, upon delivery, to take care of Dekar’s immediate needs as quickly as possible so that Cortney and Marge could hold him and spend as much time with him as possible..  We all watched as Dr. Jeakle lifted Dekar out of Marge’s womb and cut the cord.  We listened for that first cry, which didn’t come.  Dr. Jeakle brought him to the warming island–he was so blue and barely breathing.  But I remember noticing how sweet he looked–tiny, with lots of dark hair. 

Many thoughts raced through my mind as I dried him off—He’s so tiny–He looks so perfect–PLEASE BREATHE.  Dr. Mann listened to his heart beat.  He tapped the heart rate out–at first around 100, but very quickly dropping to 70’s, then 60’s.  Dr Mann asked me to give him some positive pressure ventilation.  I gave him several breaths, while Dr. Mann continued to listen to his heart and tap out the rate, which continued to drop into the 50’s. 

At this point, Sue, Dr. Mann, and I all thought that Dekar was not going to make it.  So we quickly wrapped him up and took him over to meet his parents.    When Cortney held him and Marge started talking to him, is my first recollection of hearing him cry.  This is when it seemed to us that he started trying–fighting–once he was near Marge and Cortney.  We could see him become more vigorous with his parents.

At this point, Sue, Dr. Mann, and I felt conflicted.  Dekar probably could have stood to be suctioned, but his heart rate was still very low, and we were reluctant to take him away from his parents.  We were still thinking that it didn’t look like he would survive.  At that time, though, Marge thankfully asked if we thought he should be suctioned.  We quickly took him to the island, suctioned him, and listened to his heart rate, which was actually starting to rise.  He returned to his parents, where he continued to have more effective breathing efforts, and a little stronger cry.  By this time Dr. Mann got a heart rate between 130’s and 150’s, but Dekar’s color was still pretty blue.  We were able to give Dekar some supplemental oxygen by mask while he remained snuggled with Marge and Cortney during the completion of the surgery.  His color did improve, and his heart rate stayed in the 130’s to 140’s.  Dr. Mann, Sue, and I were becoming cautiously optimistic that this little guy would get to meet his siblings.

Once Marge’s surgery was completed, every one returned to her room.  Dekar was carried by Cortney.  He appeared at that point to be holding his own, without the supplemental oxygen. 

It was a real privilege and honor to be present while Dekar got to meet all his siblings.  He truly seemed to respond and be aware–there was so much love in the room for that little baby!  After a couple of hours, with Dekar continuing to hold his own, I was given the opportunity to weigh, measure, and bathe him.  His sister, Rachel was right by my side, watching everything I did.. 

I will always be grateful for the chance to meet Dekar and your whole family–and to be able to share in this special, yet difficult time in your lives. 

May God bless you all. 

Kathy D. RN”

I never heard this song before today. It fits in so perfectly with the memorial ornament I purchased.
hope2

WITH HOPE–STEVEN CURTIS CHAPMAN

This is not at all how
We thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you’ve gone away
And left us with the memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you, but …

We can cry with hope
We can say goodbye with hope
‘Cause we know our goodbye is not the end, oh no
And we can grieve with hope
‘Cause we believe with hope
(There’s a place by God’s grace)
There’s a place where we’ll see your face again
We’ll see your face again

And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God’s plan
But through the cloud of tears
I see the Father’s smile and say “Well done”
And I imagine you
Where you wanted most to be
Seeing all your dreams come true
‘Cause now you’re home
And now you’re free, and …

We can cry with hope
We can say goodbye with hope
‘Cause we know our goodbye is not the end, oh no
And we can grieve with hope
‘Cause we believe with hope
(There’s a place by God’s grace)
There’s a place where we’ll see your face again
We’ll see your face again

We have this hope as an anchor
‘Cause we believe that everything
God promised us is true, so …

So we can cry with hope
And say goodbye with hope

We wait with hope
And we ache with hope
We hold on with hope
We let go with hope

For quite a while I have been looking for a Christmas ornament that really reminded me of Dekar.  Today, I found it.  I’ve been having some rough days and finding an ornament in memory of Dekar helped to lighten my mood and make my soul smile.  It isn’t really an “ornament”, but that’s okay. 

Here it is:

hope1

Although I miss Dekar like crazy I have the promise that I will see him again; I have HOPE because of Christ.  A little boy, joyfully displaying a HOPE balloon caught my attention, and I knew it was meant for me. 

“Hope is symbolized in Christian iconography by an anchor.  And what does an anchor do?  It keeps the ship on course when wind and waves rage against it.  But the anchor of hope is sunk in heaven, not on earth.”

~~Gregory Floyd,  A Grief Unveiled

(The above figurine can be found hereWillow Tree® by Susan Lordi –“Hope”, stock #26163)

It’s hard to know what to write for an obituary when a whole life is encompassed in just over eight hours.  The funeral director didn’t handle many baby/children’s funerals (thank goodness) and he didn’t have a template to work with that was suitable for an infant death.

I did some research on the internet, thinking it would be quite easy to find a guideline for an infant/child obituary.  I was saddened that there was little to no help.  We didn’t plan to have a service, since we felt that we had our own private time right at the hospital.  We decided to have him cremated because we don’t have roots in this town and didn’t want to end up leaving him should we ever move.  But I still wanted to honor Dekar and the life he gave us, even though it was short.  I wrote up an obituary that said everything I felt was appropriate.  The funeral director fixed it a bit, and then it was sent off to the newspaper, both online and print.  I didn’t realize there was a price associated with submitting an obituary to the newspaper.  We decided to just post it in the local paper, who also posted it online.  This made it convenient to share with the many family members and friends who are out of town.

Below is Dekar’s obituary.  For our situation it covered the basics.  Some parents add a special note to their baby or a poem.  Some share a picture.  Some may want to include the reason for death.  (I am not sure why I didn’t include that—if I could do it over, I would add that he had Trisomy 18 and hypoplastic left heart syndrome.)

Dekar Ezri Schmidt passed peacefully in the arms of family on June 27, 2008.  He was born at 10:46 a.m. and met the eyes of Jesus at 7:10 p.m. the same day.

Dekar was the son of Cortney and Marge Schmidt of Atwood (Ellsworth).  He is survived by eight siblings, Hali, Aaron, Solomon, Eli, Rachel, Jadon, Melchizedek, and Isaiah, all at home.

His paternal grandparents are Jerry and Judy Schmidt of Tomahawk, Wisc.; and maternal grandmother, Laura Pehoski of Stevens Point, Wisc.

Dekar gave us a lifetime of love during his short time on earth.

The Now I Lay Me Down To Sleep Foundation provided a volunteer photographer to record his short life with us.  In lieu of flowers we would be pleased to have you support their mission to help other grieving parents through their remembrance photography at: The Now I Lay Me Down to Sleep Foundation, 7800 S Elati St. #111, Littleton, CO 80120, or:  http://nowilaymedowntosleep.org/pageDisplay.php?page=42. Winchester Funeral Home in Charlevoix is handling the arrangements.

If you are in a situation that you are using the above as a guideline, I am very sorry and my heart goes out to you.  I pray that this will serve to take away a little bit of added burden associated with your loss. 

Since there is a need, I am working on a separate page of sample obituaries which other parents have graciously offered to share.  I am updating it as often as a new obituary or memorial is offered. 

 

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.

After the diagnosis of Trisomy 18 and hypoplastic left heart, my head swirled.  I kept praying that God would heal Dekar.  But having experienced a child that went through cancer**, I knew full well that God sometimes has other plans and allows us to go through very difficult situations.  So, as I prayed for Dekar’s complete healing, I also prayed for guidance and direction to plan for the worst case scenario.   I started scribbling notes on what I should look into.  Below are items I researched and discussed, along with things I wish I had done or questions I wish I had asked.  I am also linking to the Now I Lay Me Down To Sleep forum where parents weigh in on this matter in more depth.

These are items that were on my mind at the time (or things I wished I would have done.)  The Birth Plan is the outcome of researching most of the items below. (This page will be updated as time goes on and my memory is refreshed.) Last updated June 18, 2009.

MY CARE:

  • What would be best for me?  Natural delivery or c-section?
  • If I chose c-section, what pain medication would allow me to be as alert as possible after Dekar’s arrival?  (Discuss with ob nurse and doctor.)  What pain medication will allow me to be the most mobile?
  • If I go into labor naturally, do I want pain medication?

DEKAR’S CARE:

  • What will give me the best chance of seeing Dekar alive–natural delivery or c-section?
  • If Dekar is able to eat, will he be able to breastfeed?  If not, what other options are available?  Will a nurse be able to teach me to tube feed him?  What is the hospital equipped for?
  • Can he have surgery to fix his heart? What outcome could I expect?

IF HE IS ABLE TO COME HOME:

  • Contact local hospice and talk to them.  What do I need to know?

IF DEKAR DIES:

  • How long can I hold him after his death? Does the hospital have a policy for deciding this time frame?
  • Does the funeral home have a time frame for picking him up?
  • When do I get his clothes returned from funeral home?  Will they be washed when they are returned? (We chose cremation, so his clothes were returned to us.  I suggest removing the clothes and reclothing at the hospital directly before sending the baby to funeral home.  Dekar’s clothes were returned smelling of the funeral home, and that made me sad.)
  • Cremation or burial?
  • What funeral home?  (Don’t assume the local one in town will be the best to serve your needs.  Meet with the funeral director personally.  Choose your funeral home as carefully as you would pick your doctor.)
  • Will you be able to view your child again if you choose cremation?  In other words, once the funeral home has him, is that the last time you be able to hold his earthly body?  Some funeral homes allow another viewing before the child is taken for the cremation, some don’t. 
  • If I choose cremation, how do we receive the ashes of our child? 

OTHER STUFF:

  • Can we camcorder the delivery in the operating room (c-section)? 
  • Pictures—have a couple cameras to use, along with plenty of batteries.  Buy extra disposables, just in case.
  • Is there a Now I Lay Me Down To Sleep photographer available?
  • Do I need to supply the material for the casting of his feet and hands?  (Kits available at Michael’s.  Buy a few since they don’t always turn out perfectly.  I did one of each hand and feet.)
  • What does hospital provide as far as making memories?
  • Finalize a birth plan.  Make several copies.  Have doctor read it at each visit as it is updated.
  • Make sure staff  knows how to spell and pronounce Dekar’s name.
  • Take a special blanket to hold Dekar in.

Even now, I still feel I covered everything as well as I could–however, I admit I have some regrets.  I don’t dwell on them.  I don’t beat myself up for them.  If they pop into my mind, I think about them, deal with the emotions that are tagged to them, and thank God that I really did do as well as I could at the time, given the circumstance.  If I let these regrets overtake me I would be miserable and bitterness would rule. I have to give myself grace.  Besides the hard diagnosis, I had a c-section and on pain control.  My thought process was not as sharp as it is on a “normal” day.  I was tired and trying to make the most of the whole situation.  Sigh.  All that said, here are my…..

THINGS I WISH I COULD GO BACK AND CHANGE:

  • Have an extra outfit to change Dekar into before he was taken off to funeral home.  When I got Dekar’s clothes back they didn’t smell like him any more–they had taken on the funeral home smell.  That made me sad.
  • I wish I had spent the whole night holding Dekar after his death–allowing the nurse to cool the baby at intervals as needed. 
  • I wish I had changed at least one of his diapers.
  • Clarify what “standard suctioning” is so that I knew we were on the same page with that instead of assuming we were.
  • Not allow the dr. to go do an exam on Dekar.  Looking back, there was simply no need for it. 
  • I wish I had taken off the hat that the nurse put on him and replaced it with the one I brought right away. 
  • I wish I had been prepared to know how Dekar’s ashes would be delivered.  Because we didn’t purchase an urn right away,  we received his remains in a thick plastic bag which was in a cardboard box.  I just wish I had known that beforehand.  I would have been more proactive about getting a permanent “resting place” for Dekar.

**My oldest son is almost sixteen years old and a cancer survivor.  He had hepatoblastoma with metastasis to the lungs.

Shortly after coming home from the hospital I told the family that the 27th of every month will be “Ice Cream for Dekar” day.   This is a way that we can keep Dekar’s memory alive, and it’s a fun thing to do.  I would get hassled by my family that I would go out for ice cream so much while pregnant—but I loved feeling Dekar kick and ice cream seemed to do it for him!  I don’t know if it was the sugar or the coolness, but he reacted. Since we had gotten his diagnosis of Trisomy 18 and hypoplastic left heart, those kicks became even more precious to me.   I looked forward to each outing and the movements that would soon follow.

So, July 27th we all went out for our first “Dekar Day”.  My oldest son said, while licking ice cream, “I’m sure glad that Dekar didn’t like meatloaf.  I mean, what would be the fun of having meatloaf every month.”  🙂

Eating the ice cream brings back fond memories for me.  It also conveys to the kids who may not otherwise remember Dekar that their little brother is worth remembering and celebrating.

_________________

February 27, 2009

Today Dekar would have been eight months old. 

Sigh.

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I have rootbeer and ice-cream ready to go for tomorrow.  (March 26, 2009)

_________________

On Dekar’s first birthday we all had ice cream cones covered with sprinkles.  What was so funny to me was hearing from several  friends that on Dekar’s birthday they ALSO had ice cream with sprinkles!   I’ll never look at ice-cream with sprinkles the same!

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