What I’ve Learned

Only you will find what comforts you and helps you as you grieve.  There is no right way to grieve, which has been something I’ve struggled with since losing Luke.  Allow yourself time to cry, to get angry, and to smile.  It’s all okay.  Don’t feel guilty for having a good day.  God and time are the true healers.  We’ll never get over our loss, but we will learn how to live with it.

Below is a list of questions we had when facing our loss.  Our answers reflect what we learned and what worked for us.  If you are faced with similar questions we ask that you do what is right for YOU!  Only you will know what that is.

  1. Should we terminate the pregnancy after a fatal diagnosis?
  2. How was labor?
  3. Did your milk come in?
  4. Should we name the baby?
  5. Should we take pictures?
  6. Did you allow visitors to see the baby?
  7. What do we do with the body?
  8. Does the baby get a birth certificate?
  9. How did you plan the burial service?
  10. How did you decide on a casket spray? 
  11. Should I see my baby before he is buried?
  12. Should I attend a support group?
  13. Should I talk about my baby?
  14. How did you share the loss with your older children?
  15. What resources helped me?

 

  1. Should we terminate the pregnancy after a fatal diagnosis?  There is not a right or wrong answer, yet it’s something that I continue to struggle with 2.5 years later.  You have to decide what is best for you and your family.  Make sure to talk to your healthcare providers regarding all options.  I would also encourage seeking out counseling specific to your situation.  Worth Kilcrease is an amazing bereavement counselor who specializes in perinatal loss and I would highly recommend seeking him out.  He’s experienced loss himself and he’s also heard the stories of so many of us.  He won’t tell you what to do, but he can give you guidance and ask you to take time to think over your decision.  Also, PRAY over your decision.  And, try and have peace in your decision.  This has been the most difficult struggle for me.  Luke’s test results confirmed the genetic defects that would lead to death shortly after his birth, yet I still struggle with wondering if I should’ve carried him to term.  What was more humane?  I really don’t know, but I know what was best for me and my family at the time was terminating the pregnancy when I did.  In my heart I do not think I made a bad choice, as I had peace about it when the decision was made.  The mind can be mean, however, and not a day goes by where I don’t question my choice.
  2. How was labor?
    Physically:  In my case I was given a prescription to prepare my body for labor.  I took this throughout the night and was formally induced at the hospital the next morning.  Being that I was delivering at roughly 20 weeks, I was forewarned that active labor would just come out of nowhere, and it did.  Leading up to active labor I experienced only minimal cramping and contractions.  Pain medication was available but I didn’t need it. I did feel my water break.  Active labor to delivery was approximately five minutes. My doctor, bless her heart, didn’t even get a chance to make it for delivery!  The nurses were prepared for this and did a great job on their own.
    Emotionally:  It originally scared me when I learned I had to be induced to deliver a baby that wasn’t going to be alive.  I became disconnected from him.  Thankfully I had 24 hours of labor to process our situation and accept it.  That’s when I began to love my baby all over again.  I was scared to see him knowing that he’d be so tiny and have deformities.  I wasn’t even sure he’d look like a baby.  But, he did. He looked perfect.  He was perfect to me.  I cried pushing, I cried when I held him, I rarely stopped crying.  But I wouldn’t change the experience for anything in the whole world.
  3. Did your milk come in? My milk did not come in primarily because of Luke’s gestational age.  If the baby is older it’s likely yours will come in.  Talk to your healthcare provider about that.  As for the rest of my body, it was pretty much like my first pregnancy.  I cramped and I bled.  My period came back a month after delivery.  I had to lose the baby weight on my own without the help of breastfeeding!  You would think God would bless you with a magical weight loss after all you’ve been through, but don’t count on it.
  4. Should we name the baby?  Again, totally up to you.  I didn’t want to for the first few days, but once in the hospital I connected with him and realized he deserved a name.  He was my son!  Why wouldn’t I name him?  It gave him an identity.  If you haven’t considered a name ask the nursing staff for a baby name book.  They should have a few on hand.
  5. Should we take pictures?  YES YES YES!!!  Take advantage of this precious opportunity to love on your child because it’s the only opportunity you’re ever going to have.  The thought of pictures used to creep us out, but once he was here we couldn’t take enough.  I highly recommend taking at least a few pictures…you can put them aside and have them available in the future when you’re ready to see them.  If you welcome the idea of pictures, consider contacting the non-profit Now I Lay Me Down To Sleep.  This organization has volunteer professional photographers who specifically photograph situations like this.  It’s not uncommon to hear that they only photograph 24 weeks and greater, but they will consider an earlier loss.  Have your spouse, family member, or nurse contact the organization and request a photographer.  If the photographer feels comfortable they will come onsite for a baby younger than 24 weeks.  As for holding the baby – do it!  The staff wrapped Luke in a blanket and we got to hold him and love him.  It was okay to touch his face and his tiny fingers and toes.  The staff may discourage you from a lot of touching if an autopsy is pending, but do know that it’s okay to do it.  And, if your baby is much older you may have the opportunity to bathe and dress the baby.
  6.  Did you allow visitors to see the baby? We did.  Originally we weren’t sure if anyone would want to, but our families thought they owed him the respect and those that felt comfortable seeing him came.  We even had a set of close friends come and meet Luke.  We wouldn’t encourage an entourage, but don’t be scared to ask your family if they want to see the baby.  This was their brother/sister/grandson/granddaughter/etc., too.  As an FYI we did not allow our nearly three-year old daughter to meet Luke.  More about that later.
  7. What do we do with the body?  There were several options to consider. Here in Austin there is a group burial available if your child is of a certain gestational age and under a specific weight.  You will not be able to attend the burial but you can go visit the site afterward.  Please discuss this option with the nursing staff.  Cremation and burial are two other options.  Cremation is a good choice if you don’t consider your current city your “home.”  Ashes are mobile and can relocate right along with you.  Cremation is also a cheaper alternative to burial. We actually had slighted toward cremation but ultimately decided on burial.  We are very happy with that choice.  We worked with Harrell Funeral Home and Cook-Walden for the services and the burial.  Cook-Walden in Southwest Austin has a “Garden of Innocence” specifically for babies.  That is where Luke is buried.  I love having a place to physically go visit him, even though I know he’s truly residing in Heaven.
  8. Does the baby get a birth certificate?  Luke did not receive a birth certificate because he was not alive at delivery.  He only received a death certificate and his date of death was the day of delivery (January 21st, 2011), not the day the pregnancy was actually terminated (January 19th, 2011).  If your baby is delivered alive but passes shortly after you will receive a birth and death certificate. I believe you can also claim your baby on your tax return, but please check with your local CPA for details.
  9. How did you plan the burial service?  The staffs of the respective funeral homes are well versed in all losses.  They will show you burial plots, grave markers, caskets, etc.  I would encourage you to preview the area of the cemetery where babies are buried to help determine the right spot for your child.  I encourage ordering a grave marker because it is exhilarating to see your child’s name engraved.  You know your loss was real but sometimes seeing the name helps others realize it was real.  Know that you have a choice with caskets.  The standard casket for a baby Luke’s age reminded me of a shoebox and that is the last image I wanted in my head – my baby buried in a shoebox.  They can special order other caskets and receive them in a timely manner.  They might be a little pricier, but for me it was worth it.  And, see what your options are for a memorial book.  A lot of funeral homes have it included in the baby or child package. Others make you pay for it outright, and the cost can be very high.  Do not think you can go out and find a baby-appropriate funeral register at Hallmark or Hobby Lobby because they do not exist!  I even called wholesalers and they do not sell them to retailers, only funeral homes.  Consider asking the funeral home if they have an extra that they’d be willing to “give” you.  That’s how we ended up getting ours.
  10. How did you decide on a casket spray?  There are not a lot of online resources for infant or children’s casket sprays, which in reality is a good thing.  But, when you need one it can be difficult to decide what to do.  Google helped us get a few ideas.   Ultimately we discussed ideas with a florist, and trusted in them because they usually know what is appropriate.  We chose beautiful blue hydrangeas with white daisies and a touch of yellow rose buds.  We found a petite stuffed lamb to lay on the arrangement.  The lamb held a ceramic cross that read “God’s Child.”  It was appropriate and we really loved it.  Just be careful with hydrangeas.  They do not last long and ours had started to whither prior to his burial.  Thankfully Randall’s carried light blue hydrangeas b/c we purchased some on the way to the funeral and replaced the wilted flowers.
  11. Should I see my baby before he is buried?  While I don’t recommend an open casket (again, completely your choice but recall this is an unusual circumstance for most people, attending the funeral of a baby), I do recommend that the parents see the baby one last time.  We had a nurse encourage it despite the recommendations of the funeral home.  The funeral home thought Luke wouldn’t look the same as he did after delivery, particularly because of the autopsy.  But, he did, his coloration was just a little different.  The case could certainly be different for your baby. I would recommend asking the doctors what kind of testing might be done on your child and how that will affect the body.  Perhaps it may be best for you not to see him, but for us there was very little change.  That time spent with him prior to the burial was so special to me.  It was the last time I was ever going to see him or touch him until we meet again in Heaven.  It gave me a chance to say a final goodbye.
  12. Should I attend a support group?  Why not?  It’s not what you think…at least it wasn’t for me.  TV sensationalizes a lot of things.  Support groups are good opportunities to learn from others who have been there and gain their support.  You can sit back and listen or share when you feel ready.   There are a several groups here in Austin and they are all formatted differently.  You can probably find one that suits your personality and needs. Check out our resources page for guidance on where to go in your area.
  13. Should I talk about my baby? At first I thought I was going to hide my loss from people, but I learned it serves me better to talk about him.  I’m proud to have a son and it makes me happy to talk about him.  Do know that it will probably make some people uncomfortable.  Don’t get mad at them, they haven’t been there, and until you’ve been there, you truly won’t understand.  Regarding husbands, a lot of them don’t like to talk and share their feelings.  My husband held it in for a while but admitted to finding peace when he started to share with his friends.  Encourage him to talk, particularly to you, but to others as well.
  14. How did you share the loss with your older children? Cadie was two during my pregnancy so I opted not to share much about it.  I figured once my belly began to grow larger it’d be easier for her to identify the coming addition to our family.  At 19 weeks I was just starting to show and therefore Cadie never knew what was going on.  She honestly thought I’d gone to the hospital because I’d fallen down on the potty!  She did not see Luke nor did she attend the funeral.  We introduced her to Luke through a stuffed lamb I named Luke.  I told her it was her little brother.  She loves that lamb and will hold it and talk to it just as if it were her little brother.  On Luke’s due date (June 14th) we took Cadie to the cemetery and showed her his grave.  It’s hard to explain to a child that their baby brother/sister is here but also in Heaven…I know that’ll get easier in time.  Cadie and I did a balloon release, sending them to Heaven for Luke to have.  We’ll continue to do this annually.  When she gets older I’ll open up more about her little brother and what happened and eventually she’ll see his pictures.
  15. What resources helped me? What hasn’t? I’ve utilized a lot of different support avenues. I’ve attended several support groups including the Pregnancy Loss Support Group of Austin and HOPE Perinatal Loss Group. The Pregnancy Loss Support Group of Austin has usually been a small, intimate gathering of parents. Husbands are allowed to attend and it is encouraged. I’ve always taken something positive away from the group and enjoyed talking about Luke and sharing grief struggles with people who have been there. The HOPE group is more structured, as it is a closed six week session with a fairly set agenda. The facilitator, Worth Kilcrease, offered a lot of positive insight to handling the different aspects of the loss and grieving process. It was also helpful to get to know and learn from other families. We all serve as an encouragement to each other, and I believe some lasting friendships will be made through this group. I also met one on one with Shereda James, a licensed counselor with the Hyde Park Counseling Center. Shereda was instrumental in giving me bible verses and instruction on how to love myself after the loss. She helped me identify that losing Luke wasn’t my fault. She reminded me of God’s love for me. After nearly two years I finally attended a gathering with Face2Face Austin. They host meetings at restaurants, happy hour spots, even one was at an awesome pedicure place!  It’s very casual yet we were all able to share and connect through our stories. Regarding books, I highly recommend Grieving the Child I Never Knew. I read this right after my loss and found it spoke to me day in and day out. This book touched me so much that we actually include it in our LLO box. I’ve also read Heaven is For Real. There is one particular chapter that will strike all mothers who have lost, particularly through a miscarriage. It will give you encouragement that your baby is in Heaven and absolutely cannot wait to meet you. They also have a kids version, Heaven is For Real for Kids.  I recently bought this to read to my daughter because she wanted a better perspective on what Heaven was like.  She’s excited and knows her brother is up there waiting impatiently for her! The rest of the books listed on our page are in my arsenal and I plan to read them throughout the year. As for websites, I visit various ones. It really depends on what I’m in need of that day. I have found blogs from mother’s who have lost and those are especially humbling, powerful and resourceful. And lastly, I have several remembrance items to honor Luke. I love my Remembrance Ring from James Avery. It has his angel birthstone, a garnet. It’s also engraved with his name and angel birthday. The Piggies & Paws footprint angel is so special to me. I thought it was something I’d tuck away in my room but I actually display it on our mantel for all to see. Lastly, a friend gave me a necklace from Firefly Photo Jewelry. It’s precious, it has his name, and I get lots of compliments on it! As for my husband, he’s still searching out the perfect tattoo!