Storytelling

I haven't written much lately and I am really behind on the blogs I follow, but I find myself relaxing and getting a pedicure on a beautiful Saturday. Since it feels a little self indulgent to be pampering myself in the middle of the day, instead of being at home, I thought I would multitask to feel productive.

Probably about two months ago (maybe more, time doesn't always seem relative anymore!), I received a letter in the mail from the fetal and infant mortality board for the county where I live. When I first saw the letter, I was confused. I had some moments of panic thinking that they thought I did something to cause my son to die. The letter didn't say anything to that affect, but all I had to see was the words mortality review board and my imagination took off! I read the letter and put it aside, fully intending to follow-up in my own time (which probably meant never!). Several weeks letter when I had put the letter put of my mind, I received a call from a nurse with the review board asking to schedule a home visit to interview myself and my husband. Without being sure what to say, I just told her I needed to talk it over with my husband. My husband decided he was not comfortable with the request, which I truly understood. I decided, though, that I wanted the chance to talk about Ryan. When I was pregnant I had decided I would tell Ryan's story at any opportunity I was given and this was an opportunity. I did ask to not have the meeting at home and instead made arrangements to meet at a Starbucks (a delicious drink couldn't hurt!). So, on a Thursday afternoon, I took off early from work and was interviewed by a nurse from a mortality review board.

The meeting lasted two hours and we talked about everything from my previous pregnancy, my pregnancy with Ryan, learning of his diagnosis, Ryan's birth and death, and the time since his death. If a topic could be discussed it was. I was able to share all the positive aspects of my pregnancy and ideas of what could have brought more comfort knowing I was continuing a pregnancy when my child would not leave the hospital with me. For me, it was a wonderful opportunity to talk about Ryan! It was also a chance where I might be able to use my experience to benefit another mom who finds herself in this journey. At this time it was also explained me why they do these interviews. In the county where I live, the review board meets once a month and reviews all cases of fetal and infant death. They obtain data from medical records and when able from family interviews, with the hopes of identifying anything that can help reduce these situations. Apparently the infant mortality rate in the county where I live is higher than the national average. They also use the information gathered to make others aware of available resources and to ensure the moms and families are receiving these services. The board is comprised of doctors, nurses, social workers and others who have a chance to have a positive impact on BLMs.

I found out that just this past week Ryan's case was presented. Now, when they present the cases, all identifying information is reviewed, but I have a coworker who attends the meeting and she knew it was Ryan's story (helps when your child has a rare diagnosis). It was nice to be able to hear from her that his story was presented in a way that I would have been proud of and that it touched the members of the board. It feels good to know that his story continues, it did not end with his last breath.


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This is the stuff...8 months

8 months of empty arms.

8 months of hidden tears.

8 months of unanswered questions.

8 months of guilt, sadness, frustration, anger.

It has been 8 months, and some days I feel as empty in my gut as my arms are empty, aching.

I came across a song today "This is the Stuff" by Francesca Battistelli

This is the stuff that drives me crazy
This is the stuff that's getting to me lately
In the middle of my little mess
I forget how big I'm blessed

This is my plan, to do what I can to focus on my blessings. To not just remember Ryan in sadness, but to remember the blessing of holding him in this live with the promise of the next.

This is the stuff that gets under my skin
But I've gotta trust You know exactly what You're doing
It might not be what I would choose
But this is the stuff you use

I haven't been writing too much lately. My mind just feels kind of empty, or maybe just full of thoughts that run through but don't stay long, so this may bit a bit of a rambling post.

Right now I am hanging out with my little man who is slightly under the weather. He keeps running low grade temps and then spiking a fever once or twice a day. We already have an appointment for him to see the pediatrician tomorrow, because I got a call from his daycare Friday that he was messing with his ears. For those who don't know, Sean has had ear infections since he was 3 months old. In fact by the time be was 10 months, he had 11 infections! At that point, he had ear tubes placed and while it took time we definitely noticed an improvement. We even got to experience a 6 month period of no doctor's appointments!!! Just about two months ago, Sean had a nasty ear infection (the drainage made my stomach turn!), but a good course of antibiotic ear drops and oral antibiotics and life was good again. Lately though, he has complained that when he yawns, he doesn't hear the same. Now add on the occasional fever and ear pain, and I am afraid there may be another ear infection! Of course, my mind doesn't stop there. My worrying mind seems to get carried away more now after loading Ryan. I just have a fear that someone else I love is going to get snatched away from me.

Every day is a balance of trying to live for the day while remembering the past and hoping for the future. I wish I could say I have found a good balance...I normally function by compartmentalizing. I put thoughts of Ryan and memories of him in a little pocket of my brain, tucked away for me to peek at when I am all alone. I am almost ashamed to admit a conversation from last week. I was at work and someone who works for another facility was up on the floor I work on and needless to say, this is not my favorite person. Nothing personal against him, but not someone I am comfortable around or who has come off as genuine in previous encounters. I normally manage to avoid him, but no such luck this day. Well, he came up to talk to me and proceeded to comment that I was pregnant the last time he saw me and I must have had my baby. I just looked at him and replied "my son died from a fatal genetic disorder". It worked, conversation over. So there you go, my lowest of lows. I used my son's death to get out of the conversation, now to my credit, I didn't bring up the topic.

Sorry, not a whole lot of positive thoughts going through my mind right now.

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Happy list

One big thing on my happy list -

A change in my work assignment! I had covered the same floors at the hospital I work at for 6.5 years and it was definitely time for a change. My new floors have a different pace, allowing for less stress, and a totally different opportunity. For the first time in a long time, I left work on time (or close to) almost everyday and I did not have a headache all week! I can't explain the difference more than that and that I had a coworker that commented that she hadn't seen me smile that much at work in a long time. I am hopeful that this change will allow me to tap into my grief to be a better social worker and that it will also allow me to be a better mom at home. My shoulders still feel tight, but hopefully in time, they will loosen up as well! I am grateful for my wonderful coworkers and my manager that recognized and understood my need for a change!

It is also nice to see the sun out this week!

Hoping and praying that all BLMs have a peaceful Mother's Day!


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Mother's Day

How can one day bring such joy and yet be a day of such heartache. Mother's Day has never been a big holiday in my family. Not that my mother was not deserving, she definitely was, but we just weren't a big holiday family. All holidays were celebrated in simplicity from Christmas to birthdays and everything in between!

But this year, when my grief feels so fresh (how can it have been 7 months!), the thoughts of Mother's day just bring about an ache. I love my 4 year old and look forward to hanging out with him! He is such a blessing to us, even on the days that I wonder if we will all survive to his next birthday! But the thing is, I love his baby brother, too! So while Sean can make laugh with his crazy antics and make my heart melt with his sweet songs, there is a part of my heart that still feels torn apart and I am not sure how to reconcile the pieces! This is the first holiday that keeps catching me off guard. I think I was still in shock, just still taking in everything that happened during the big holiday season (Thanksgiving, Christmas, etc) and it was easy to just wrapped in Sean's excitement. But this holiday, it's about being a mother. There is no talk of turkeys, no talk of reindeers and Santa, just mothers and children. Mothers and children...oh, my heart.

I honestly don't know what the day will bring, I am sure there will be some tears, but I am hopeful there will be smiles, laughter and joy. For I am joyful to be the mom of two beautiful boys!

To all moms, happy Mother's day, may it be a day of peace, joy, some moments of remembrance, and hope.



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