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.

Oh the places you’ll go…

I remember the summer after Joshua died my mind went some places I wasn’t real excited about.  His sister Erica had been diagnosed with allergies and difficult to control asthma about 2 weeks after his first abnormal ultrasound.  The summer after he was born I think we had a doctor appointment or proceedure for her at least ever other week if not every week.  We went through some scarry tests.  Things like cystic fibrosis tests, blood tests to check her immune system, bronchoscopy etc.  All of these things led me to think of things like “would I burry her next to her brother or in the row behind him (we had thought we would like to be next to him but there are only 2 open spots next to him).  I decided it would be nice to have them together and we could be in the row behind them.

Another thing I used to think about was losing my husband.  Our doctor had shared with us that he and his wife had lost a baby in the second trimester at about 18 weeks.  They went on to have two more children.  Several years later, his wife developed brain cancer and died the week our oldest daughter was born.  So as I would think about Joshua’s birth and our doctor’s presence there, my mind would often drift to what if I lose Brandon.  It did not help matters that shortly after Joshua was born (like a couple months) one of our youth leaders from church died unexpectedly of a heart attack (he was not alot older than us) leaving behind a wife and two daughters.

Part of this is just my natural inclination to want to be prepared for things.  I am the lady who has the huge purse with everything in it from band-aids to dental floss -if you need something jusst ask, I probably have it in there somewhere.  I think that is part of why God allowed us to find out about Joshua’s condition before he was born and also why our labor process was so long …so I could get my head around things.

Eventually I was able to stop myself when My mind would go those directions and realize I was borrowing trouble but it also helped me to go ahead and allow myself to follow those “what if’s” to their ends and realize that as with Joshua, it might not be the path I would chose but God would carry me through and I would survive.

I will remember you …a poem for Joshua

This is a poem I wrote for Joshua.  It started as just a few phrases that were triggered by a sticker I had bought to go in his baby album.  It simply said “I will remember you” and I began to think about what I would remember about our time together.  It has always been difficult for me to write to him as I don’t really know if he is aware of anything down here.  Anyway it just kind of flowed out of me (along with a lot of tears) and was a very special piece of my healing process.  You may have to click on the image to make it large enough to read.

 

My Dude

I have been seeing a counselor for about eight months.  Yesterday was my last day.

I started going to the counselor after having gone to my primary physician.  I was feeling “not right”  those were the exact words I used (through tears).  After asking some questions and doing an assessment of my general health, he said he felt I was dealing with delayed grief.  Because of all the things we had to deal with regarding Erica’s health (she was diagnosed with allergies and “out of control” asthma around the same time we received Joshua’s diagnosis), I had not been able to complete the grief process for Joshua.  He said in the medical community they call it “adjustment disorder” something he has razzed his brother (a psychologist) about because he says it’s a perfectly normal response.  So he suggested that I start with going to a counselor rather than starting with medication for two reasons: one because he didn’t feel that there necessarily was a chemical imbalance and two because I was trying to get pregnant.  He recommended a few places I could try and encouraged me to try someone new if after a couple of sessions I didn’t feel like I was “clicking” with the person. 

On to the counselor.  I had a previous good experience with a councilor at Pine Rest Christian Mental Health Services when we were dealing with some job related issues several years ago, so I thought I would try to see if I could go back to the same guy or find someone similar.  The guy I had was no longer there so I asked to be set up with someone new. ( I tend to prefer male Dr.s, counselors, etc. due to my own personal opinion that women use there own experience as a reference and therefore can not be as objective -the same could be true for a man treating a man -just my own bias) So I scheduled an appointment with a male counselor who had an opening at a time that was convenient for me.

When I arrived for my first appointment they had me come early to fill out some paperwork, the typical insurance forms, who else may we discuss your information with, tell us a little about yourself and your mental health history.  So I filled in about the previous counseling I had gone through, feel free to talk to my husband or my primary physician, some family information, and a little about myself -like the fact that I have difficulty with confrontation.  So eventually the guy comes out and introduces himself and we head to his office to start the session.  He starts going over the forms, asking questions about the info … so middle child huh? …tell me a little more about your previous counselor, what did you find helpful? I believe it was at this point that he told me that he hoped he would be able to be helpful as well but that if at any point I didn’t feel that it was working, to feel free to try someone else. …so you have difficulty with confrontation, do you do it too often or not enough? -I can do it if necessary but I really don’t like it.    So tell me what brought you here today…  well, my doctor recommended I come because I’m stressed out, I have difficulty thinking/making decisions sometimes, my house is a disaster, we have been going through lots of “stuff” related to our daughter’s diagnosis, my son died, and my in-laws (who I like) moved all the way to Mississippi.  As he went back through and got more information, I was beginning to think “this might not work out” but I’ll give it a couple of sessions like Dr. Mohr said.  We continued the session and from my perspective it seemed like he didn’t really think all these things were that big of a deal.  As we were wrapping up the session, going over payment information, frequency of sessions, etc, he again made the comment that if at any point I didn’t feel like it was working out I could try someone else.  I don’t know if he just lost his place in his normal routine of check out but after a few more minutes of conversation, he made the comment again.  I decided that was a sign and said, “I think that might be a good idea”.  Then he got all concerned and wanted to make sure he hadn’t said anything that offended me, I assured him that he hadn’t but I just didn’t feel like we were clicking. (one specific problem was that he would ask me several questions at once and then just I was collecting my thoughts to answer, he would ask more questions -not helpful for someone who has difficulty thinking) So he says, “well it looks like we got that confrontation thing taken care of”.  So out we go to set up another appointment with someone new for the next week.  As I am trying to set up a new appointment, there are no male counselors available when I am.  Near tears, I was beginning to think maybe this isn’t what I’m supposed to be doing.  I thought, “well, maybe I’m supposed to go to a woman” so I started to ask if there was a female counselor available.  The lady behind the desk says, “well, let me check on something a minute”  when she came back she says Steve is available.  So we set up my next appointment with him.

As I sat in the waiting area the next week, I was not exactly looking forward to going through my whole story again.  Then out comes Steve, I’m thinking “this guy is like twelve”.  When we get into his office, he seemed almost a little nervous.  He starts explaining the billing process and his approach to counseling and explains that he’s a fifth year student intern, in my mind I’m thinking ” oh cr..umb, I’m going to have to find someone new next week too”.  So we start going over the notes and paperwork from the week before and he starts asking questions about our situation.  He was actually very empathetic and shared that his sister-in-law had lost a child at an early age.  I started to think maybe this guy was going to work out after all.  By the end of the session, it had gone well enough that I set up another appointment for the next week.  I joked with Brandon when I got home that I must be either a pretty harmless case that he couldn’t mess up too bad or I made a good teaching case.  As it turned out, it was a perfect fit and I would even go so far as to say that God placed him here at this time just for me (and maybe a few others).  He will be done with his internship in June and He, his wife and little boy will be moving back to Iowa.  If it was up to me he would definitely recieve high marks and if you are in a similar situation in Iowa, I would definitely recommend him.

So why is the title of the post “my dude”?  As we would talk about my appointments, I was never exactly sure what he was …was he a psychologist? should I call him a counselor? add to that the fact that at first I could  never remember his name without looking and we began to refer to my having “an appointment with my dude”

To anyone in a similar situation, if you find you are having difficulty moving forward after your loss or have additional life circumstances that complicate the grieving process, I would recommend counseling.   I shared with “my dude” that usually my husband is my sounding board but because he was also dealing with his own grief, I needed someone in addition to him.  I found it very helpful to have the perspective of someone who was not directly affected by our loss and could give me an objective viewpoint.  For me, I did not feel that I was able to get that from anyone in my family because they were also affected by our loss as well.  I was able to ask if what I was feeling and thinking was “normal”, or would people think it was weird?  One caution, I would recommend you make sure that your counselor shares your beliefs as mine did as that has a huge impact on how they approach things.