Tuesday, May 24, 2011

The strange, other worldly almost bi-polar experience

Today is a tough day but then there have been a lot of those these past couple of weeks. That has been my experience with this grief. It comes out of nowhere and not just once but again and again and then sometimes just for good measure, again, it hits. It is times like this when I consider talking to someone about medication. Now if you know me you are probably surprised that you just read something like that coming from me. Truth is that I have considered it but I won't. It just doesn’t make sense for me. I am not depressed, I hurt. I know why I am sad and I am able to function in my sadness so I figure all it would do is make me hurt less (of course there is no guarantee in that either – even antidepressants need boosters to work these days) and possibly mess with my body chemistry even more. I smile and laugh and play with my son. I am not overly angry. I can express my sadness and I can set it aside in the moment if I need to (such as working with my clients). I have hope for the future. I know what I believe and it has helped immensely and I am doing grief healing work. So medication might help me to hurt less BUT doesn't it make sense that I hurt? I mean, I am grieving the death of my infant son 8 ½ months ago. It makes me think about the expectations society has concerning grief and healing from it. My physical body has gone through hell in dealing with the stress of it all. So has my mind and my broken heart. It takes time to move away from that into balance again. So is something wrong with the world for people to believe that I should not be sad? Don’t get me wrong. Everyone in my life is supportive with my expression of my grief. I haven’t had a single person say anything about letting go now, getting over it, moving on, etc, which is good. I hear and read about other mothers in my support groups who have experienced such things and my heart hurts for them. I imagine that I will experience it sometime. God help the person who does it. I already feel sorry for what I may say.

I am currently friends on facebook with someone who is expecting fraternal twin girls. I am excited for her. It has been a long and difficult road to pregnancy and motherhood for her. This was her and her husband’s last chance and they were blessed with twin girls. A couple of weeks ago some pictures of her showed up on my facebook home page. They were amazing and beautiful professional pictures of her and her pregnant belly. I felt pain in my heart looking at those pictures. At the same time in my pregnancy I was fighting for my boys life and living in fear of one or both of their deaths. I wanted pictures of my pregnancy and after the diagnosis of TTTS I was so stiff in fear I could not move to make that happen.

May 20, 2010 I learned I was having identical twins - one year ago last week. I remember the shock, fear and amazement I felt when I heard those words. My beautiful boys.

Nolan had a doctor’s appointment last week to check his apnea monitor. Good news – no apnea or heart rate dropping events since April 4 and 5. I was talking to the nurse practitioner about how Nolan goes to sleep at night; that usually he falls asleep in my arms and then I lay him down in his bed. She asked me if he had always been spoiled. For some reason I saw red with this question. I took a deep breath and said to her “Respectfully, I am not sure what you mean by spoiled. Do you mean spoiled like when we had to have surgery during my pregnancy to save his and his brother’s life? Or spoiled like when he was in the NICU for the first 66 days of his life?” And then I started to cry. The nurse apologized profusely saying she said the wrong thing and she knew it as soon as the words were out of her mouth. I accepted her apology I believe she truly was sorry she had said what she said. I don't believe Nolan and I will be seeing her again.

Then also that day I see/hear someone call out for Dr Turbow at the hospital. Dr Turbow, a good doctor with a good heart. He was the doctor on duty during Eli’s illness. He is the one who called me at home, on that rare night I actually slept at home, to let me know Eli was sick with NEC. He was there throughout the night and into the morning that Eli died. He is the person who told me that I was the most important piece to Eli’s comfort and health when I asked if I could sit next to him. He was there as Eli was disconnected from everything and given to me to hold as he died. I saw the pain in the doctor’s eyes. When I heard someone call his name in the hospital I dropped my eyes and moved away as quickly as I could. There was no way in hell I could look at him in that moment and not fall on the floor a trembling sobbing mess. I couldn’t do that so I ran.

And finally, today is my nephew Owen’s first birthday. He is celebrating it in spirit as an angel. How I wish he could have stayed with us longer. I am feeling it today. As beautiful and loving as his celebration was on Sunday, no parent should ever have to celebrate a first birthday with out the child having the first birthday being there. But we, those who are left behind, do what we can to honor, remember and love our babies. I gave Owen’s gift to his parents. It felt right. I could not imagine going to his first birthday celebration without a gift. This has me thinking about Eli and Nolan’s first birthday coming up in September. How will I remember and honor my little Eli? I know many will be there to celebrate Nolan and I am thankful for that, he deserves it. I just hope that I can figure out how I can celebrate both of their very different lives and that I won’t be the only person to do so. My life - the strange, other worldly almost bi-polar experience of having identical twin boys, one living and one not.

And mixed in with all of that is teaching online and on ground, which I love. Working on my project Rediscovering Your Light, laughing, hugging Nolan, spending time with my family and telling clients that their grief will not kill them, it may feel like it but it won’t. That they can cry and even if it feels like the tears will never stop, they will. Somewhere in time they will stop. I tell them I understand grief because I am living it.

Saturday, May 14, 2011

That's Where It Is

"In the circles I've been running,
I've covered many miles,
And I could search forever for what's right before my eyes,
Just when I thought I'd found it,
It was nothing like I'd planned,
When I got my heart around it, it slipped right through my hands,
Here with you I feel it,
I close my eyes and see it,"

"When I'm crashing through the madness,
Not sure who I'm supposed to be,
When I'm caught up in the darkness,
It's your hand that's leading me,
You bring me back to solid ground,
You lift me up right here, right now"

Even before I was pregnant, this song would bring tears to my eyes. After Eli's death I would play it over and over and over again, specifically listening to this part

In the circles I've been running,
I've covered many miles,
And I could search forever for what's right before my eyes,
Just when I thought I'd found it,
It was nothing like I'd planned,
When I got my heart around it, it slipped right through my hands.

It perfectly expresses how I feel about finally becoming a mother and then having twins and losing Eli. I still cry when I hear or read it. - My identical twin boys, my Eli slipped right through my hands. Eli left us 8 months ago today.

My previous post was on my special day for being Eli's mommy. Last Sunday was my special day for being Nolan's mommy. Nolan got his first tooth on Mother's Day to celebrate. What a perfect gift for me, seeing my earth baby growing and developing. There were some wonderful Mother's day cards. One hand written note touched me and brought tears - "Motherhood was a hard fought battle for you filled with glorious joy and heartbreaking sadness. A battle you faced with courage, dignity and grace..." Yes it was and I hope I do....

It has been a busy couple of weeks. I have been teaching on line, which I love! And with Nolan teething he has been much more demanding and fussy. He wants to be held and just will not let himself nap for much longer than 20 minutes at a time. When he wakes up from his naps he wakes up with a scream. It is not a scream of anger, it sounds like a scream of fear. When he wakes up he wakes up alone. He does not like to be alone. I truly believe he is missing his brother.

Nolan has gotten another helmet to help his skull to continue to form correctly. He will wear it until he grows out of it, probably for about 8 weeks. It's plain white right now. So, now I just need to decorate it as wonderfully as I did his first one. :) He is still on thickened formula, taking medication for his reflux and still on the apnea monitor. We have appointments with all three doctors so we will see if anything will be changing soon for him. He is really interested in food and starting to sit up on his own really well. I think it is time to start baby food if the gastroenterologist gives the ok.

I have been to the doctor a couple of times myself. There is a concern with my thyroid. The ultra sounds have shown a couple of nodules (which is not a problem) one of them is showing microcalcifications (one of the indicators of cancer). I was scheduled to get a biopsy last week but as it turned out they seemed to have shrunk so were too small to biopsy. I now have to wait until August and go through it again. I have very mixed feelings about this. I am working on seeing it as good news, that my body is healing itself. But I have to be honest and say that my biggest experience about this challenge is that it brings back the trauma of my pregnancy last year and all the fear and waiting that went along with our diagnosis of TTTS. I fell into overwhelm VERY quickly, that moment in the doctor's office I think.... Sometimes I just cry everyday again. I am working myself through it and have started a new way of eating and supporting my body through food, vitamins and supplements. It seems as though both my thyroid and adrenals have crashed due to the stress of last year.

Finally - I started the project that I was talking about back in March. Rediscovering Your Light. The facebook page is up and running. The web site is in processes. I am excited about it and am looking forward to doing more with it. All of it because of my boys.

Sunday, May 1, 2011

Baby Loss Mother's Day

Today was my first baby loss mother's day. I spent the day in Tucson celebrating my youngest nephew's, Ethan's, First Communion. I am his godmother. It was a beautiful day full of sun and a cool breeze, family and food. Nolan loves seeing his cousins Caitlin, Logan and Ethan and they love spending time with him. It makes me happy.

My godson Ethan and I have always been close. When we were leaving the church he wanted to ride in the car with Nolan and I. As I was getting Nolan's car seat in the back of my mom's car Ethan noticed the necklace I had on. It was a gift from a wonderful friend of mine. She gave it to me after Eli died. Ethan looked at it closely but because I was moving around he couldn't read it so he asked me what it said. The necklace has three graduated circular pieces and each piece has a name. The smallest one has Eli stamped in it, the middle has Nolan stamped in it and the largest one has Piperlyne stamped in it. It is one of four wonderful necklaces that I received in honor of Nolan and in remembrance of Eli.

I explained it to Ethan and he asked me "Why?"
"Why what?" I asked
"Why did Eli have to die?" He asked with all the innocence of an 8 year old.
"I don't know why, sweetie. He was sick." Ethan didn't say anything so I continued. "He was born so young and so little and he just got too sick to live." I continued to get Nolan's car seat secured looking as his sweet smiling face.
"It is sad." said Ethan.
"Yes it is." I agreed with him. Yes it is.

And that was it. Bless Ethan's sweet 8 yr old self, he was my connection to my first baby loss mother's day. Thank you little boy Eli for being with me on this earth for the short time you were here. Thank you little boy Nolan for being the smiling happy spirit who is staying with me. Thank you little boy Ethan for asking.

As I look in on Nolan asleep in his crib, I see how he has again rolled over towards his musical seahorse glow worm. He has one arm wrapped around it and I wonder again if he is looking for his brother and reaching out to touch him like he used to do in the womb.

"When a wife loses her husband she is named a widow. A child who loses his or her parents they become an orphan. But there is no word for a mother who loses a child, for she remains just that: a mother. She will be a mother for the rest of her life."

Sending out love to all mothers.