I started a group

Just wanted to let anyone who is interested know that I started a group on Facebook for “families of children with Limb-Bodywall complex.  It is a place where we can connect with others who have gone through a similar experience.  Please consider this your official invitation to join us.

I don’t know what to do …

Three years ago today we buried our son and so I guess now is as good a time as any to recount that experience.  Today started out nice then got a bit rainy and began to turn cold.  It was warmer that day.  Interestingly that day started out a bit cooler, it had rained the day before and I was hoping it wouldn’t rain.  Brandon and I headed over to the church early so that we would have some time with Joshua (more accurately with his body) before anyone else showed up.  We had arranged for my parents to come over and help the girls finish getting ready and stay with them until it was time to head to the church.  As it ended up I had them mostly ready before my parents got there.  I had picked out my clothes the night before so all I had to do was get dressed.  I remember as I was getting ready, this gray hair sprang up from the part in my hair, I thought to myself “does the mom go to the funeral with or without the gray hair? …without” and promptly pulled it out.  We also rounded up the girls snow boots as Nana and Papa had warned us that it would probably be a little messy at the cemetery (either with snow or mud from the melted snow).  We got there before we had told the funeral home guy that we would and so they were still setting up.  I remember being surprised how many people had sent flowers.   It was kind of funny, after the funeral home guy had finished arranging the flowers on the stage, I rearranged them because they weren’t balanced (all warm colors on one side and cool on the other).  I’m trying to remember if they had Joshua there when we arrived or not … I think so.  Our “dude” from the funeral home brought him in and set his little casket on the step.  When he opened up the casket Brandon looked first …I did not want to see Joshua again if he did not look the same as I remembered him, once again Brandon was my knight in shining armor protecting me.  Once Brandon told me it was okay to look, I went over to the casket.  I remember thinking how cozy he looked and was so glad we had been able to get the smaller 18″ casket.   He was dressed in the little striped PJ my sisters had gotten for him and wrapped in the precious, delicately soft blanket my aunt had crocheted especially for him.  I think i had Brandon ask if it was okay for us to take pictures of him (my mom had told me that years ago their friends had not been able to because their baby had been stillborn but we found out it was probably because she had died before she was born and they may not have been able to embalm her) the “dude” said yes and that if we wanted to hold him again he could help us lift him out.  We took him up on his offer and each held him one last time for a little bit. When we were done I tucked him back into his casket and Brandon began to sing you are my sunshine and I joined in.  As we got to the part where you might say “please don’t take my sunshine away” I remembered an alternate ending one of the girls had learned in school… “for you have been my sunshine today” and we finished it that way.  Together we closed his casket and said our final good-bye.

I was very glad we video taped the funeral because I didn’t and still don’t remember much of it without watching the video and I was really pleased with the message.  Brandon had been up much of the night putting together a memorial video so that we could share our precious Joshua with our family and friends who were not at the hospital with us.  The girls were all in the service with us, even Lauren made it through thanks to  a steady stream of smarties to keeping her busy.  I remember being a little embarrassed at first because there were a few times where the girls were acting in a manner some might have considered inappropriate but I just tried to remind myself that they were his sisters and it’s their job, not to mention they had a right to be there.  I had not seen the video Brandon had made prior to the service so of course that made me cry.  He did such a great job capturing our experience with Joshua.

After the service we had a light luncheon and then those who wanted to met with us over at the cemetery (it’s about 45 minutes away).  My mom had gotten balloons for each of the sisters and cousins so we took them along to the cemetery in case any of the kids wanted to let them go.

The cemetery where Joshua is buried is an old country cemetery out in Lowell.  This is the hill you have to climb to get to his spot.

now picture covered in snow with a path plowed up to the top.  It was a little messy and slippery but we made it up the hill.  Actually by this time in the day it was almost 70* so we were at the graveside service wearing boots but no coats.  I wish we had remembered to take our cameras along so I would have pictures of the girls laying their flowers after the service was done and video of Brandon placing his casket in the grave. (a topic for another post)  So now to the part the post is named after …when the graveside service was finished we were sitting and I turned to Brandon and whispered “I don’t know what to do now”,he couldn’t hear me so I had to say it louder.  I had been to funerals and even graveside services but never really paid attention to what happens at the end.  We ended up standing up and exchanging hugs with those who had joined us and then made our way down the hill.  Some of my siblings and their kids came over to our house afterward so the kids could play together.  They were able to play outside because it was so warm out.  I took a short rest and then enjoyed spending some time with my family.

I still face that feeling at times …I don’t know what to do now… what are we supposed to do now…  I don’t have all the answers yet but I am trusting God to lead me day by day.  Each day has it’s own blessings.  As I was recently reminded …trust in the Lord with all your heart and lean not on your own understanding …Proverbs 3:5-6.

Wow seriously

I am so tired tonight and am waiting for my hubby to come home from a youth trip  I wish I could have gone on that I finally have been catching up on the blogs I read used to read regularly when I realized that it has been over a year since my last post.  Could it be because Joshua’s baby sister was born January 5, 2009 and we also acquired (another long story) a teenager 3 months later?  Hmm I wonder.  Last year was a busy year for our household and things haven’t slowed down much since then.  We have been so blessed by the addition of both girls but they do come with their challenges too.  Lately Joshua’s absence has been weighing on me.  Probably because we are coming up on his 3rd b-day …could that possibly be right? why yes it is.  I don’t know if this year is harder than last because last year I was just so busy I didn’t have as much time to think about it or if somehow there is a new reality that for the rest of my earthly life I will celebrate his birthday without him, I will never get to get to buy him gifts or watch him blow out candles.  He is not here.  I am thinking about wishing him a “happy heaven day” since he is not here to celebrate his b-day…don’t know, we’ll see.  To those who still check occasionally thanks for visiting.  To those who are new visitors, I’ve also started a group on facebook called “families of children with Limb-Bodywall Complex” …please feel free to join us there as well.

I had a dream…

The other night I had a dream.   I believe it is the first dream I have had about Joshua since he was born.  I should probably explain that last Monday we got the call that my husband’s grandfather had passed away.  He had been in hospice care the last several weeks, so it was not shocking yet also not necessarily expected.  I also should mention that we are expecting a baby girl January 10.  So the dream is not so very out of place and seems to have combined elements of these things.  In my dream we were at Opa’s funeral and for whatever reason I got to hold my Joshua.  Oh it was bliss!  He was as fresh and new as the day he was born.  His skin was so soft and delicate, it was truely heavenly.  The funny thing was I was rubbing his right arm, as odd as it may sound I never really did that when he was here with us, it was always his left arm that I would stroke and touch.  I just can not explain how delightful it was to hold him again and touch him -it was so vivid, so real -if only for a moment.  Then,  my husband said he had a dirty diaper and I had to go change him, but when I went to change him he was hard like a doll.  It was a really stinky diaper and what a mess, I went through all my wipes and still didn’t have it cleaned up.  Anyway, I have no idea what my brain was putting together or why but overall it was a welcome experience, even if it wasn’t real.

Died

My son died.  It is still hard for me to say or even think that.  I prefur to say when Joshua was born which in his case are the same event.  He was alive inside of me, he had his own personality, he got the hiccups more than any of my other children and while he was being born, he died.  I have to wipe away tears as I type.  My husband and I were talking just a couple days ago about how there can be such a conflict of emotions.  At the same time I miss him so much and yet I feel like everything about him was perfect.  He lived as long as he was supposed to live, he was beautiful, he was just right, he was what God created him to be, he was not a mistake or malfunction, he was everything he was meant to be. And I love him, so I miss him and that’s okay, not fun but okay.

Sorry, not the most upbeat post but I needed to write it.

I love to share/In my experience

I often find myself not knowing where to start.  So here is the background on this post.  I had posted on a friend’s facebook about some of the things we had done when Joshua was born in response to her question “how do you say goodbye to something so precious”.  Her MIL commented:  “It was good to read of such wonderful ways of celebrating a child’s life and to listen to someone talk about the feelings they had!

 

As the first time grandma to be I feel totally inadequate in this situation. Please do you have some words of wisdom on this situation for the extended family!”

 

but then I couldn’t figure out where the link to her question went and was not able to respond so I figured if I answer it here, I can answer it for her and anyone else who wonders.

 

So here is my best answer:

The first thing I want to say is that each person’s situation and response are unique.  What worked for me may not for someone else.  There are things I myself wish I did differently -not many, but a few.  So, that being said, here are some things that I would recommend.  In these situations there are many things that are out of our control, for me it was helpful to be back in control whenever possible.  At the same time there are many decisions to be made and that can get overwhelming so I would recommend using phrases like:

-would it help if I …

-would you like me to just take care of …

-do you mind if I/we …

Then give them a little extra time to think things over.

I remember one example specifically.  During the time we were preparing for Joshua’s funeral my  mom-in-law called and asked if we had a casket spray (we didn’t -not a detail I had thought about) and then asked if we would be okay with them picking one out.  It was wonderful.  I told them the size of Joshua’s casket and they took care of it.  Now it helps that I know my MIL has great taste and would pick something nice.  Their pick was perfect, I don’t think I could have made a better pick if I tried.  Another thing that was great was that my mom had video taped everyone holding Joshua, it wasn’t something she asked about and later she even shared with me that she was concerned she would upset me or make people feel uncomfortable, I can’t tell you how much I treasure the pictures and video of our time holding him.  We also got video of his funeral and I wish we had thought to tape the graveside service. For me there were some things I wanted to do myself because I had a very specific way I wanted them and others I couldn’t have cared less about.

 

Be prepared for tears.  Sometimes I cried because I was sad, sometimes I cried because I was relieved, sometimes I cried because I was so touched, sometimes I cried just because I needed to let out some stress.  Add to that the normal postnatal hormone rebalancing tears and a body could get dehydrated. (which reminds me a couple of boxes of “good” tissues will most likely be welcome, hospital tissues are about as soft as tree bark)  My husband made the comment at one point that it was hard for him when I cried because he was used to being the reason I cried (having done something to make me sad) and it was hard for him because normally there was something he could do to make it better and about the only thing that helped during that time was for him to just hold me.

 

Some of the things they do may seem strange -unless it violates a law, give them some slack.  My husband wanted to be the one to place Joshua’s casket in the grave, to some people that might seem strange but for him it was taking care of his son.  After everyone left, my friend and her husband wanted to be the ones to “close” the grave for their girls -it was what they needed to do (that’s one of the things I sometimes wish I had done).

 

Don’t be afraid to compare the kids, maybe their noses will be exactly the same or one will look just like Dad and one like Mom.  Just don’t be suprised if they don’t agree.  I have one niece who each family said looked like the other’s side (I think neither one wanted to claim her -she wasn’t the prettiest baby) My one daughter looked like my family from one angle and like my hubby’s from another.  You may even want to do something each year to remember birthdays or other times you may give the surviving twin a gift.  My In-laws donate to a charity we picked on our son’s b-day and at Christmas -just because he’s gone doesn’t mean they have to forget him or pretend he wasn’t here.  One caution -you might want to check your idea with mom & dad, some gifts are more for the giver than the reciever and that can be a source of tension.

 

I would also recommend that you give them space to be able to comfort eachother.  They will most likely each have times when they feel inadequate to comfort eachother but it is so easy for communication to break down between the parents and having that time to stay connected is very important.  And don’t forget it’s okay for you to need some time for yourself too, you will be grieving as well.

 

Practical side:

-we had family in our room before my epidural wore off and I could get up to do things like brush my teeth (a pack of her favorite mints might be nice) or change into different clothes (I had brought a nice Pajama top that would make me feel presentable)

-my mind has always been like a sieve after delivery anyway so it was nice to have a notepad and pen to be able to write things down so I wouldn’t forget who had volunteered for what or who was bringing dinner which day.

-it was very helpful to have some cash on hand for different things ie. my sister had to pick up a Rx for me etc.

 

There used to be a song on country radio by Patty Loveless called “how can I help you say goodbye”.  Some of the lyrics are …time will ease your pain …how can I help you to say goodbye, it’s okay to hurt, and it’s okay to cry… I would add to that it’s okay to laugh and it’s okay to cry.   There were many things that had a humorous side or that were joyful or beautiful in how things occured in my son’s birth too.  Believe it or not I treasure both the good and the bad. 

 

It’s probably good I couldn’t reply on facebook, I don’t think they give you this much space.  Thanks for the questions, I love to talk/write about Joshua and spend time remembering him.

 

Praying God’s blessings for you as you await your precious new grandbabies.

Joshua’s Story Update

Joshua’s (abbreviated) story was added to the prental partners for life web site this week.  I’m still working on the full story but it feels good to have that much up and going.

Honesty and Jealousy

Okay, how can one be jealous of someone who has lost a child and is going through the same grief that I experienced?  I am not jealous of the fact that they have had to endure the pain I know all to well of losing a child.  I am jealous of those who had the brains to start a blog while they are going through it instead of trying to go backward and catch up.  I am jealous that they have the chance to express the exact same thoughts and feelings I have experienced but they beat me to it or they say it better than I likely ever will.  However, oh how good it is to know that someone out there understands exactly what I have been through, felt the things I have felt, experienced the unfathomable love for a child who has never taken a breath but instead stole my heart -the pride of how their life touched others.  I know my father in heaven understands all these things but he created me a human being who desires to connect with other human beings.  Now mind you it is not like I have found a “kindred spirit” it is a collection of people with whom I share these things in common.  I will still write Joshua’s story and I will say all the things I felt and experience even if I feel like I am copying or not putting it as well as someone else might have because I know how much each of these stories has touched me and helped me heal, and hopefully God will use my/our story in the same way.

Why an amnio?

My friend asked me a very good question the other day.  Why the amnio?  You see my husband and I are both pro-life and would not consider terminating a pregnancy regardless of the diagnosis.  In the past I would never have considered an amniocentesis because of the risk to the baby.  So why consider one when Joshua already had a risk of preterm labor.  The main reason was so we would have a more definite diagnosis and therefore a more specific prognosis.  In some cases the information gleaned can help a family decide how far they want to go with treatment if at all.   Based on his anomalies, there were several possible causes, the most likely were chromosomal in nature and therefore an amnio could help us know better what the diagnosis was.  Also, depending on the diagnosis, the prognosis would be a little different.  Now in Joshua’s case the prognosis really wouldn’t change much, in all cases -because of his anomalies,  his diagnosis was considered fatal but it would give us a better idea of how long we would have with him both before birth and after.  We knew that barring a miracle, Joshua’s condition would not ultimately improve and so we decided that if he lived through birth, we would only employ comfort measures so that he would not struggle or be uncomfortable while we spent as much time with him as humanly possible. Some side benefits were that we were able to find out that the risk of recurrence was very low to almost nonexistent should we decide to try again.  The most exciting finding was that he was definitely a boy and we were able to give him a name.  So would I do it again?  Not unless the circumstances warrant it.  Only so that we could give our child the best care possible.

Incidentally, I was very nervous about the amnio.  The pictures of the needle inserted into the abdomen in my pregnancy books did not look in anyway appealing.  Thankfully we did not have to wait to have it done or I might have chickened out.  I would not say it was painless but it was more of an “uncomfortable” feeling than specifically painful.  I was also a little nervous because we already had low amniotic fluid and I wondered if it would fill back up good enough but God took care of Joshua and me.  The night after the amnio they had said to lay low so we (Joshua and I) just sat around in the recliner drinking our required fluids.  I remember that I did have some mild discomfort that night, just sort of a dull ache -I described it to one of my friends as kind of like when you’ve exercised for the first time in a long time.  The spot where the needle was inserted left me with a blue dot after it healed.  I still have my little blue “Joshua dot” though it continues to fade over time.

working on it

Hello all,

Just wanted to let you know I am still working on Joshua’s story.  Some times I don’t get to work on it for days/weeks at a time.  Sometimes I’m just not in the right place to work on it.  Being busy with three girls over the summer with another one on the way (also a girl) has left me with little energy to spend on it but slowly I am progressing.  Part of the problem is that I want it to be so perfect and not forget any of the details.  So please have patience with me… I’ll get it done eventually.