MARCH FOR BABIES

Jeff and I will be walking with other members of Team Graciebelle on April 24th to raise money for the March of Dimes in memory of Gracie. We have set a realistic goal of raising $300 for this very worthy cause. If each of my Facebook friends, each of my blog friends and each of Jeff's Facebook friends donate just $2.00, we could collect a total donation of more than $800 (this is in addition to donations from friends and family who are not FB and blog addicts.) To make a donation, click on the widget in the top right corner of the page. :-)

Which of my blog friends are also walking in memory and/or honor of their little ones???

SOME POSITIVES

It appears that until the school year comes to a close, I will be restricted to blogging one time during most weeks.  This has been somewhat bothersome over the last few weeks because I have actually found myself with quite a bit to say, but without time to get it down in writing and get it posted.  By the time I get a chance to get things in writing, I have forgotten what it was that I wanted to say in the first place.  In many respects, however, the time away from baby loss land is not all bad.  There are times that I definitely feel like I am missing out on some things during the week, but I am able to catch up on the weekends in a fraction of the time that I used to spend during the week.  I have found that being away during most of the week sometimes help to keep me ‘up.’  Like some of my other blog friends have noted in recent weeks, I have found that sometimes staying constantly immersed in baby loss makes it hard to climb out of the hole.  If I allow myself to have some ‘normal’ time/days, the baby loss hole sometimes seems a little less overwhelming and ominous and somewhat manageable.  It sometimes allows me to feel human again and remind myself that I still have a very active life to live despite the fact that I have been forever changed by the loss of my beautiful peanut. 

In the last two weeks I have read two newborn obituaries in the newspaper and been to a funeral.  Blah.  Not exactly uplifting momentum.  I posted on Monday about the death of a former patient / friend of mine.  I want to thank those who sent emails and left warm comments in response to that post.  I spoke with his mother the following day, which I think was good for both of us.  She asked if I could take some time in a few weeks to help her do thank you cards similar to what we had done after Gracie died.  (We still had thank you notes to send for presents received at our baby shower.  We knew that we more or less had a ‘free pass’ on thank you notes, but we didn’t want the gifts to go unrecognized.  We used large labels and printed a ‘one size fits all’ thank you message that we put inside each thank you card.)  We talked about the last few weeks of her son’s life and how to find a balance between the relief of knowing that he is no longer suffering and the grief that surrounds the fact that he is dead.  My receptionist and I went to the funeral on Thursday.  The minister who did the service also did Gracie’s service – I found out on Tuesday that they had picked her because of the positive things that they had heard from me and from others about Gracie’s service.  As soon as we entered the church, the first thing his mom asked me was ‘Do you have any tips for getting through this?’  I reminded her that I can only offer her certain advice from experience, since her loss is so much different than mine, but I did tell her that there is one thing I was fairly certain of – she would very likely hear Becky’s voice through the entire service, but she would probably not absorb a word of what she was saying.  I was at such a loss that I really couldn’t find anything else to say.   

The last week has also had some up moments.  Last Saturday, with the help of my MIL and a few friends, I threw a surprise party for my husband’s 40^th birthday.  Believe it or not, it was the first birthday party that he has ever had.  Ever.  It was a good time, and he was  surprised.  This past Thursday was his birthday, and coincidentally, the gift that I ordered from My Forever Child arrived on Thursday.  He cried when I gave it to him, and I have to admit…I didn’t think that it was something that would move him to tears.  I got him a small silver heart pendent with Gracie’s footprints engraved on one side and ‘Graciebelle’ and her birth date on the other side…so he can always have her with him.  

On Tuesday we adopted a dog from the SPCA.  It has been about 8 years since we have only had one dog, but in June we found ourselves down to one dog after our other dog died unexpectedly.  Until Bailey died in June, Morgan had never been an only dog, and he has been pretty lonely over the last few months, so we have been watching the SPCA’s website for a while.  Two weeks ago, they seized 26 dogs from a puppy mill near here, so we figured that we would go and check things out.  Most of the puppy mill dogs are still not available for adoption, but they did have one available that was running free on the farm as a ‘pet’.  I spent some time with her on Saturday and then Jeff and I took Morgan for a quick test run on Monday morning – the test run went well, so Jeff went and got her on Tuesday morning.  She is definitely out of her element and it appears that she is still expecting to be hit, but she is settling in pretty well.  

 

I am going to close with a ‘weekly’ list – they have really become more of a monthly list, but what the heck.  I want to end on a positive note, so I am going to do a list of positives in my life (in no particular order)… 

• Jellybean 
• A faithful and hard working receptionist/biller/kick-me-in-the-ass person in my office.  She decided to come back to work for me after I found myself with an open position in a couple months ago.  I am glad to have her back, as she has been a tremendous help in getting me reoriented and pointed in the right direction in the office.  I finally feel like I am gaining positive ground again. 
• My husband, whom I genuinely love.  I know that he genuinely loves me, even on my crazy days.
• Spring.  Enough said.
• Positive momentum for our fire department.  A few months ago things were looking really ominous for our department.  Over the last two months, the momentum seems to have shifted a bit and things are getting better.  I am hoping that it will not be long until we are back among the best of the best.
• Making it through almost 8 months without Gracie...still standing.  (Some days a little crooked, but still standing.)

 Wishing you all a peaceful week...

THE UPS and DOWNS of DEATH

Tonight Jeff and I attended the monthly baby loss support group meeting at our hospital.  I usually feel relatively uplifted when we leave the meetings, since it is nice to be in a group with people who have had similar experiences - well, you know what I mean.  Tonight was really no exception - I was feeling pretty good when we left.  One of the other girls who attends follows my blog pretty regularly and knew that we are pregnant; and we were able to share our news with the everyone else tonight, so that was nice.  We got home and I settled in at the computer to do some work before bed, and Jeff went to his parents' house to pick up their contributions for the new dog that we are getting tomorrow. 

Of course, I can't settle in for work before getting a quick Crackbook fix...all it took tonight was one hit of Crackbook to knock me down.  There it was in black and white - another death announcement.  Not a baby death - a grown up death - sort of.  The announcement was of the death of a 21 year old young man who I have been working with for the last several years (with the exception of the last 6 months due to scheduling) as the result of a complicated and ultimately undiagnosed neurologic disorder that, over a period of 15 years, robbed him first of his vision, then of his hearing and finally all motor control/function...all of this generally has had him trapped within his own mind/body for the last 18-20 months.  This kid was brilliant - in light of his visual and auditory impairments, he graduated third in his high school class.  Together with the therapist who was working for me, we poured hours upon hours into researching and trying to find an appropriate medical referral for this young man, as none of his doctors seemed to give a shit about what was happening to him.  By the time we found someone who thought they could help, he was not medically stable enough to make the 3 hour trip and it's been a down hill slide from there.  His overall health has been up and down over the last year, but I was under the impression that he had been stable over the last several months.  I have not been able to go in to see him over the last 6 months because I have been juggling two caseloads.  My receptionist spoke with his mother a week ago, and she mentioned that he really wanted me to stop in for a visit, even if it was just for a few minutes.  Of course, I have been too busy, so I haven't stopped to visit...only to find his death announced on Facebook tonight. 

So, here I sit...trying to process the meaning of another seemingly meaningless death...trying to remotely fathom what his parents are feeling...trying to balance the knowledge that on so many days he wished for death and the fact that he is no longer suffering against the fact that he is dead...feeling like I let him down because I was too busy to visit while he was dying...  I know that there is no way that I could have known that this was so close unless someone had told me, but that doesn't make me feel much better right now.  I now find myself being that person that we have all grown to hate....the 'do I call, do I visit, do I send flowers and donation now and visit in a few weeks?' person.  I grew very close to both this young man and his mother over the course of the last 3 years, but after a relative hiatus of 6 months, I have no idea what the right move is from here.  I know that I will figure it out as soon as my head stops spinning, but right now, this whole thing just blows.  I am really growing tired of the death thing, especially in terms of people who are just too young to be dying. 

THE BOTTOM

I can't say that it was completely without warning, but I was still a bit surprised when I had the biggest emotional 'break' that I have had in the last 6 months in the shower this morning.  I can honestly say that I thought that I was past this point, at least until we start reliving the emotions when Jellybean arrives, but I guess that I was wrong.  Perhaps I am going to run this emotional roller coaster now and have less of it when Jellybean arrives?  Who knows.  All I know is that I was so shaken this morning that I did not go to work, and generally it takes being at death's door to keep me home.  In light of the fact that I was emotionally feeling so shitty, Jeff and I finally put up the shelf that his parents got us for Christmas.  It was specifically for us to display some of Gracie's things.  It has helped me to feel a little better, but just a little. 

 

I also want to give a shout out to Katy over at In Hannah's Honor to say thanks for Gracie's beautiful wooden memorial plaque.  If you haven't visited her Etsy store, yet, check it out!! 

ARTICLE

I stumbled upon this article today...it was published less than 1 month before we lost Gracie...as I read it, if felt like I was reading my own thoughts and experiences...

NEW GRIEF CYCLE and NEW THOUGHTS

I’m starting to think that I’m cycling through the stages of grief again, but this time on a much larger scale than the first time. I feel like I am stuck on repeat, but in a constant state of turbulence...constant repetition of upside down and backwards denial, anger, depression and acceptance. Whatever this is, it’s something that has been brewing for the last month or two and it is finally starting to take its toll. My days are either completely on or completely off - I am either productive beyond all expectations, or don’t accomplish a damn thing from the time my feet hit the floor until the time my head hits the pillow. I have lost all tolerance – for everything. My lack of tolerance for the people and things around me is actually pretty astounding. I know that much of this is all because I am exhausted from the blistering pace that I have been running for 4 ½ months at work, and some of it is compliments of surging hormones. Regardless of why it is happening, I don’t like it, and I hope it passes before I come completely unglued on the wrong person.

While I have been wrapped up in work and in this crazy, warped grief cycle, I have again gotten out of my regular internet routine. I haven’t been returning emails. I have breezed over only a handful of blog posts, which breeds a certain form of guilt. I have not been to BCC to check out any of the boards that I belong to, which, in some ways has turned out to be a relatively good thing. I have not had any desire to publish new posts on my blogs. Some of this is generally okay with me, for various reasons, but nonetheless it is somewhat perplexing and frustrating.

On top of this, I have been feeling a new frustration recently that seems to be the result of continually rehashing my pregnancy with Gracie over and over again. I have been replaying everything over the last few weeks, and at one point I had a brand new thought – How differently might things have ended if we had elected to undergo amniocentesis that confirmed presence of T21? I have maintained since Gracie’s death that if things had gone differently at certain points during our pregnancy, there is an outside chance that Gracie would still be here; but this new question/thought takes things beyond that statement and into a whole new thought process that goes beyond me, beyond Jeff, beyond Gracie and beyond our OB care providers.

After learning that the probability of Gracie having Down Syndrome was 1:47, we declined the amniocentesis since we knew that we were not going to terminate the pregnancy, regardless of the outcome. It was a decision that we discussed with our providers at later appointments, and it was a decision that they seemed to support. After that point there was never any mention of Down Syndrome again until the moment that Gracie was born. So, for essentially 2/3 of my pregnancy, Down Syndrome was out of sight, out of mind. This is where my new thought really kicks in. I keep wondering why there was no further discussion after we declined the amnio and explained why we were declining. Why weren’t we told that certain chromosomal abnormalities, such as trisomy defects, are linked to small placentas, which in turn can cause IUGR? Why wasn’t I monitored as if a positive T21 diagnosis had been made? Why didn’t we have at least one ultrasound doppler study to look at blood flow through the cord to ensure that there was no placental insufficiency? Was there anything in my chart to get the attention of those reading it ( who hadn’t dealt with our increased risk) and make them aware of the probability/possibility of T21? If my chart had been flagged as ‘probable/possible T21’, would we have gotten the response that we got when I questioned Gracie’s apparent lack of growth at 35 weeks? Although we really did not want extra unnecessary ultrasound exams at the end of the pregnancy, if someone had explained the increased risk for small placenta and IUGR, we would have likely submitted to a few more just to monitor growth, especially after she started losing ground. Why, now - during this pregnancy, will all of these precautions be taken - even if there are no indicators pointing to increased risk of T21???

I still place no blame on our providers, but I know that anyone who reads this post could easily interpret it as finger pointing. That’s not really it. It’s a larger thought process. How many OB providers use the practice of ‘out of sight, out of mind’ when someone with a high probability of T21 declines an amnio and has no obvious markers for T21 during subsequent ultrasounds? How many others have decided to forego the amnio knowing that they would accept the baby regardless of a diagnosis, and then had a similar situation sneak up on them? The entire thought process makes me want to personally distribute a copy of this article to every OB/GYN and midwife in North America ...