Showing posts with label blessings. Show all posts
Showing posts with label blessings. Show all posts

Monday, May 9, 2016

Longing....

Sometimes there are things that touch me. Turn me upside down and inside out. Often they highlight a feeling of longing deep within me. A feeling that I rarely hang out in. I am a pragmatist. I feel whatever feelings come along but if they do not move me where I desire to be I pay little attention to them and move on.

Longing - deep yearning or desire for something. I have had inexplicable moments of longing for all of my life. Sometimes, in the past, I could pin it on something like wanting a lover/boyfriend, or being somewhere else, or even pictures of the Universe. Real images or not, they bring about a sense of longing, like I remember a time when I lived amongst them, so much more than I do now.



I think we all experience longing. A huge part of grief is longing. Longing that things could have been different. As a parent of a child who died the longing can be intense. It is your job to keep your child safe. The belief that if you or someone else would have done something different, your child would still be here, alive.... It can be very heavy. In my grief experience that is something I chose to explore very rarely. And that is not a judgment towards anyone, including myself. Everyone's experience of grief is different. For me I found it impractical. I focused on the raw pain, deep sadness and even rage from the experience. But, what was done was done. If anything like that happened again I would make some different choices but I could not change the past. Nor could I change the fact that my son was dead.

And then a song like this comes along. It's been out since 2011 but I am hearing it and feeling it now and I cannot stop listening.


The longing it elicits is not connected to any one thing; a relationship, being somewhere else, what could be, what used to be, the Universe, the life of my Eli... but rather all of it.

I can say that the feelings of inexplicable longing are more poignant, powerful, timeless and common since the death of my son. So I am listening to this song over and over again and crying. Tears are streaming down my face as I write this and listen to the song. And I feel that in this seemingly strangeness or even silliness that there is healing that is occurring with each replay. It's like another part of me is being opened up and released through my tears every time the song starts again.

My son and his death truly has been and continues to be the crack in my being that lets the light in.

Monday, March 7, 2016

Blog Name Change

Hello all!

You may have noticed a name change in my blog. I'm glad you have found us even with the name change. I have a number of reasons why I did this but the biggest and truest reason is that life has changed, and I have grown. My love for my sons has grown and how I express that love out loud has changed and expanded. And the new title of the blog now mirrors that.

Crystal baby - is my sweet survivor, Nolan. He's 5 now and in his final year of preschool. He is my crystal child. He is one of many children coming in who need a different world so that they can grow, develop and thrive. He is my driving force of change; in my life, in his life and in the world. Change is never easy and he challenges me to embody the change I wish to see in the world. He is the reason I am "Be the change you wish to see in the world." - Ghandi.  I have danced back and forth on embracing this - Back because of fear that it was too big and too small and because before 2010 I never wanted to do this...  And forth because it was mine to do because of love, what I know to be right and because I am uniquely qualified to do it. (As we all are uniquely qualified to succeed in our own lives) I was resisting the change. I am done resisting. Let's do this.

Star baby - is my sweet little man, Eli. Star baby is my best way to describe him. He was symbolized by Angel baby in the previous blog title which is a common title in the baby loss community. It's used to let others know that this baby is a baby who has died in utero or shortly after birth. I have used angel baby with conflicting feelings. It just never seemed to fit what I felt. Star baby always felt right and true. Images of the sky, stars, galaxies and universes was just a better match to Eli's energy.  The work I do in the TTTS Support Team non-profit is just a small expression of my continuing love for my son.

Me - is me. This one has been hard too. My life is not quiet, nor slow but it can be repetitive and overwhelming. I have always embraced self love and self care AND I watched me slowly go under with the demands of my life over the past couple of years. I remember my flight attendant days where I would advise 100+ people up to 5 times a day to secure their oxygen mask first and then assist their child or the person next to them. I would have people ask why and I would explain that if they don't help themselves they cannot help anyone else.... Yes, I used to teach people this.... And yet... It was never my intention to ignore or disregard myself, I believe I deserve love and care.. It was exhaustion and overwhelm that stopped it and now I have further to go to get back to where I was and more forward.  I am hoping that since I have stopped fighting what is I will have much more energy to live in what is, happily.

So here we are Crystal Baby - Star Baby and Me living in peace with reality and ready for change!


Thank you Byron Katie.


Saturday, September 6, 2014

Twin pregnancy, TTTS Diagnosis and Premature Birth


March 24, 2010
This is the day that changed my life. The day I found out I was pregnant. I was in such shock I called my friend Tracy and actually sent her a picture of my pregnancy test just to make sure I was seeing it correctly. Her response – “I suck at math but I see two pink lines.” And so that was it. I was single, 42 years old and pregnant with my first child. WOW! On top of that I was self-employed without insurance. But from the moment I knew I was pregnant I knew that this baby was mine and I would keep it. There was no other option for me and so I cried and cried and cried. I cried in wonderment, shock, fear, grief, love and gratitude. I took the 2nd pregnancy test at 2am, just to confirm. Yup, still preggers…. How the hell was I going to do this?

The first person to tell was the father of the baby, M. He was not expecting this and he needed to know. It was quiet shock that sat in the room for a long time after I said the words. What was going to happen with us? We were not anywhere close to any commitment bigger than dating. The evening ended with neither of us knowing anything other than both of our lives were changing.

After telling M I told my friend John. I went to work at the store were I see my clients and John was there. I adore John, he is like the older brother I never had. I knew that I was never going to be able to make it through the day without talking to him and if I talked to him he would know something was up. So I sat down to chat, he said something about the fact that I looked freaked out. I agreed that I was freaked out and went on to give him the news. I started to cry as I said it. Even saying the words brought on overwhelming emotion. I didn’t know what I felt but boy I felt it! John asked me if I would be keeping it. I knew the answer to that one. Oh, yes, this one was mine. John called himself Uncle John and it seemed quite fitting.

The next day I went to Planned Parenthood and had another pregnancy test, the third one. Oh, imagine that, still pregnant. They gave me a tentative due date, 12/1/10 and they gave me a signed document, the size of a prescription, confirming my pregnancy. I told them I didn’t need this and the lady looked at me and smiled saying “If you don’t have insurance, the state is going to require this for you to apply for insurance.” Guess that means I will be applying for AHCCCS – Arizona Health Care Cost Containment Services. They put a rush on expectant moms, only 20 work days before a response.


Telling the Family - April 13, 2010
As it magically worked out, my mom was planning a trip up from Tucson for the weekend, the perfect time to tell her face to face. And so I did. I could barely keep it in. I had to tell her and tell her immediately. I don’t even know if I waited 10 minutes after she got here. She responded quietly but I saw the smile on her face. I saw happiness. I cried when I told her too. Still not knowing how I felt but definitely feeling something. She shared some stories from her pregnancies as we went to Target to buy disposable rubber gloves for when I clean out the cat litter box. We discussed how to take them off correctly. Pulling them off inside out is how you do it, in case you did not know. It’s an old trick I learned as a flight attendant.

Next on the list was my brother Lucas and his wife Whittney. They are expecting their first-born, Owen, the last week of May. It had been a difficult pregnancy for them. Their son was diagnosed with Congenital Diaphragmatic Hernia. That is when the baby’s diaphragm does not develop completely and abdominal organs can be pushed up into the chest cavity limiting the development of heart and lungs. I have seen Owen in good, strong health. His spirit visited me telling me he was going to be ok. I have seen him in perfect health since then. I was excited to tell Lucas and Whittney because now their son was going to have a cousin very close to him in age. What fun! – Anyway, they were excited and very sweet both saying that I would be an amazing mom. I hope they are right.
And then came my brother Josh and his wife Natalie. I told Natalie first, on the phone,she screamed (softly) and told me I had to Josh right now. She put him on the phone and watched as I told him. When she could tell I had told him she began her happy dance in the living room. They had been the only ones in my family who had children and they wanted their three to have some Tomczyk cousins. They had their first at age 21 and here I am having my first at age 42. I am still not sure which age is more challenging……

And next to tell was my sister, Laura, in North Carolina. I called, we chatted for a bit and then I let go with my news. She had lots of questions, like I knew she would. It was a great conversation and a good way to make sure that she will make it to AZ for Christmas with the family!
My aunties (dad’s sisters) and uncle Chuck know along with Bev, the wonderful woman my dad spent the last part of his life with. Everyone has only had words of support and love. You know who you are. Thank you!

I know what a gift my family is to me. I am sure that my baby’s various aunties and uncles (blood relation or not) will play such a big part in his/her life. Both of us are lucky, lucky people.

Kidney Bean: 8 Weeks - April 21, 2010
They say that the baby is the size of a kidney bean this week. How could something so small wreak such havoc on my adult body? I imagine I will be asking this question even more often as the baby continues to grow.

What I have learned about eating – when I feel nauseous I need to eat. The baby wants healthy food, wants me to eat vegetarian, doesn’t like food with a bunch of different ingredients and does NOT like ice cream. Just the thought of eating ice cream again makes me feel sick. I tell you though; I cannot get enough pickles, chips or even french fries!!!!! – craziness!

I got some good news on Monday; I have been accepted by AHCCCS (Arizona Health Care Cost Containment System). I am so thankful knowing that I can get the health care that I might need as a pregnant woman. I have checked into different hospitals and it looks like Desert Banner is my choice. They offer alternate therapies and even a birthing tub. I LOVE the idea of a birthing tub and giving birth in water! Seems fitting for a Pisces woman like me (the zodiac sign of the fish!)

I have been working 6 days a week most weeks and I need to change that – too tired! It is time for me to start figuring out how to make more money with fewer hours. Everyone wants to know how to do that, huh? I will be making some changes to my schedule in the next couple of weeks.

Being pregnant has raised the bar on what is acceptable in my life and what is not. Some things that were acceptable to me as a single woman now have no place in my life since I am now responsible for someone else. These things include how/what I eat, how I spend my time, the people in my life. I am not sure why it took a pregnancy to put a higher value on myself but it did and I am going with it. If something is not good enough for my baby it is not good enough for me.


Single Parent -April 27, 2010
Some big things happened this past week.
I made my first Dr. appt for the first week of May! I am looking forward to it.
I changed my schedule and no longer work on Sundays. I always had clients on Sundays but the numbers were low. I will still be available at the same location on Wed-Fri for them. It will be good to have that extra day off.

The baby and I got our first gift from Auntie Angie! It is a wonderful stuffed toy and a hooded towel in the gender neutral color of green. We are sooo lucky and grateful.
The baby really feels like a girl to me. I can’t wait to find out.

It seems I will be a single parent, very single parent. I had a difficult conversation with the baby’s father, M, to let him know that I do not have romantic feelings for him anymore. I had been feeling this for awhile but put off saying anything. I knew it would hurt him and yet it was true so I could not act as though it wasn’t. I was not going to be dishonest. I told him that I want to work this out as friends and work together as parents. His response was to let me know that he is not sure he wanted anything to do with this now. He ended the conversation with “I don’t know if I will call you again.” I am sad for him and what he will miss out. I am angry with myself for being involved with someone who could do this. Many mixed emotions… I do understand that he could have spoken in anger with the intention to say things to hurt me. Time will tell. I am not making any long term decisions about him but I know that right now I am not spending any more of my time or my energy on him. Focus is growing a healthy baby and building what we need. Time to step up, meditate, connect with my divine support system and take no prisoners – Necessity is the mother of invention – So let’s invent!

Miracle, a Heart Beat and Mothers Day - May 11, 2010
After almost a week in the hospital, Whittney is still pregnant and Owen continues to grow and develop as his parents get the world ready for his birth. I saw the beauty of your love, courage and strength. My nephew, Owen, chose his parents well.

I heard my baby’s heart beat on Friday, a very powerful sound, hearing a heart beat coming from your body and it is not your heart! WOW – I am not just tired, fat and nauseous – I am pregnant too!!
The doctor also mentioned that she was concerned about my thyroid. It is a little swollen and my thyroid is under active so I am going in for a thyroid ultra sound next week. They will also be checking my blood. I understand that a thyroid problem can cause problems with pregnancy so as much as I do not want to, I may need to go on medication for it. Maybe my tiredness is related to this….

My baby ultra sound is scheduled for May 24th so pictures will be forth coming!
Reminder to self – Never, never, never have 3 glasses of lemonade for lunch – at least not without Tums very handy for the heartburn I just created!

I had my “first” mother’s day this weekend. Thank you to all of you who thought of me on this day. I really thought that I would never experience this in this lifetime. In honor of mother’s day I went shopping and bought some maternity pants and a new bra. They are my friends!!!!

Birth, Surgeries, Twins and Babies R Us - May 27, 2010
It has been quite a time since I have written and as you can see from the title much has happened.
My nephew Owen was born via c-section Monday, May 24th. Welcome to the world my dear! He had his diaphragmatic hernia surgery on Wednesday morning and did amazingly well. He is currently on a heart/lung bypass machine and will continue to be for the next 10-14 days. Keep healing Owen as your lungs develop and grow and keep astounding the doctors left and right! Whittney is healing well from the c-section. Congratulations to my brother and his wife.

And yes, the next word of the title is correct, twins!!! Had my first ultra sound on May 20 and there they were, very clearly, two little heads, twin A and twin B. To say I was surprised is beyond an understatement! On top of that they share the same placenta so that means they are identical – Identical!! So two little girls or two little boys, oh my! I have googled identical twins the official answer as to why it happens is “they are unsure”. So I will just add another piece to the amazement list for this entire experience for me. Hopefully I get to learn the sex of the babies about mid-June. Keep your fingers crossed. I want to know!

Made my first trip to Babies R Us today to do some baby product research. With my mom and sister, Laura, in tow I signed up for the registry and became overwhelmed by the choices of bottles, cloth or disposable diapers, breast pumps, teething rings and the list goes on and on and on. I did choose a double stroller and 2 car seats. The double stroller was an important choice because I had to make sure it would fold up small enough to fit in the back of my little Scion xD. Who would have thought that THAT would be one of the biggest deciding factors? WOW

So much to continue to consider especially with twins. There are some things I know for sure, their names are not going to be matching or rhyming, matching clothes will be worn sometimes – maybe – and I am doubly blessed, as long as I live through the blessing of them growing up!


Rollercoaster - June 10, 2010
I have been sitting on writing this entry for awhile. It breaks my heart to write that my beautiful nephew Owen passed on May 30th, 11:57a, in the loving arms of his parents, Whittney and Lucas. As his extended family left the hospital together that day there was such a sense of despair. Lucas and Whittney were not able to bring their baby home. Everything about it was unnatural and unreal.
Owen’s services were beautiful and the room was filled with his extended family along with the loving support of so many of Lucas and Whittney’s friends and co-workers. This young life touched so many, what a blessing.

As a soon to be mother, Owen’s life touched me deeply. This experience has brought me to understand that I am to be grateful for every cry I hear, every diaper I have to change, every inch they grow and every bite of food they take. It will be my gift to see them grow up. I hope to remember this every day of their lives.

My twins, I will see you again on July 12th, when I get to find out if you are boys or girls. Between now and then may I continue to feel you grow.
Owen, Lucas, Whittney I love you.

Fathers Day - June 20, 2010
To my brothers, Josh and Lucas, who gave me the opportunity to be an auntie to one beautiful niece, Caitlin, and three amazing nephews, Logan, Ethan and Owen – To my own father, I would not be who I am without you – To Mike, who gave me the chance to be a mother just when I was beginning to believe it would not happen in this lifetime – Blessings to all who play the role of father on this Father’s Day.

It has been pretty quiet couple of weeks since my last post. Still healing from Owen’s passing, personally and as support (I hope – in any way I can) to my family members. Crying every day at least once a day. Sometimes I can speak of Owen without tears and sometimes I cannot. My nightmares are softening and getting lighter. I talk to my babies every day and they tell me they know Owen, they have met him and they talk to him.

My belly is definitely growing and I have so far to go yet! At 16weeks I have two babies about the size of apples growing inside. I KNOW I have gained weight since my last doctors appt, which is a good thing! I hope my maternity clothes will continue to fit me.

My business has slowed down, I guess due to the 100+ weather and summer time. I am working hard to remind myself that I have and will continue to have everything I need for myself and the babies. The weight of doing it on my own gets overwhelming at times. Don’t get me wrong, I have support and wonderful friends and loving family and yet it comes down to me, my beliefs and making it happen. As I told the babies' father once – “Of course it will work out because I will make it work out. There is no other way.” I remind myself that I was given this gift of being a mother of two and so I have to believe that I will also be shown the way to care for them. This is a blessing.


Blossoming - July 9, 2010
Ok, so it has happened, I have found my first pregnancy stretch mark, on my breast of all places! Blah…….

I swear I have gone from looking chubby to looking pregnant over night! I am without a doubt pregnant, even down to the waddle. I finally gained my first pregnancy weight, 11 lbs in one month! As the doctor said yesterday, women carrying twins (or more) experience pregnancies that move faster with stronger physical effects. So breasts have blossomed, belly has blossomed and ankles have blossomed (lovely swollen ankles). I was gifted with a big bag of maternity clothes from a friend who was pregnant a year ago but I can’t fit most of them. I am too big already!!! Thanks anyway Amanda.
Babies sitting on sciatic nerves – so not right – Ouch! It is getting impossible to sit and see clients all day without a walking or laying down break a couple of times a day. But I do have a friend who knows pregnancy massage, yippee John!

Spent the 4th of July weekend with most of my family in Tucson to celebrate my grandpa’s 90th birthday. It was wonderful to see aunts, uncles and cousins who I have not seen in years! I was so happy that my wonderful brother Lucas and his wife Whittney (Owen’s parents) where able to join us. I know it wasn’t the easiest visit for them since they should have been able to show off their beautiful son Owen to everyone. Owen’s spirit was there.

I am blessed with a loving supportive family and I know it. The father of the babies continues to seem – as a rule – disinterested. I spend most of my time and energy in faith, trusting that they AND I will make it to their birth and beyond but there are times when I am aware of sadness and loneliness, desiring someone to share this with me on a day-to-day basis. The thing is, that even if the father was willing to be here with me everyday, he is not the one I love. He is not the partner I need. I don’t dislike him, truth is I feel no connection to him. But he is the father so I dance the line without clear-cut definitions, expectations (maybe unfair) that are not met and confusion….

But I am going to be the mama of amazing babies! And July 12th I find out their gender and confirm their development. Over the past couple of days I have wondered if maybe there are three in there not just two! lol

Twin to Twin Transfusion Syndrome - July 12, 2010
July 12th, the big day when I got to find out if the babies were boys or girls. The opinions were split 70/30 in favor of girls. That was my guess too. 70% of us were wrong. They are boys! Very obviously boys as both of them showed off their “boy parts”. Two active, inquisitive little boys, oh my….

But that was not the only news I got. This ultra sound was a full one with the measuring of everything on each baby. They found some differences in size and in the amount of fluid in each baby’s sac. All of these things pointed to Twin to Twin Transfusion Syndrome, TTTS. Of course I had never heard of such a thing. It is fairly rare. It only happens about 10% of all identical twin pregnancies, around 2000-3000 a year. (Since I wrote this I have learned that it happens to upwards of 15-20% of identical twin pregnancies, known as mo/mo or mo/di. It has also been known to happen to di/di identical and possibly non-identical twins.) I was supposed to travel to Portland to visit friends and family later that week. When I asked the doctor about going, her response was. “If you miscarry you will do it whether you are here or there so go and enjoy yourself.” Not a response I was impressed by. I chose not to go…. The doctor also recommended that I get an amniocentesis done to check for genetic issues, which I refused. She did recommend a perinatalogist group for me to follow up with.
I went home shaken in shock and fear, getting on the internet I found the www.tttsfoundation.org. I read everything, emailed the foundation and immediately started on the recommended diet of extra protein and iron. I heard back from the foundation and they recommended that I meet with Dr. John Elliott if I could. He was on the TTTS board and actually had come up with the first procedure to help with the syndrome in the 80’s. Before he introduced the procedure of amnio reduction the mortality rate was 90%. His introduction of this procedure dropped it to about 50%. As it turned out Dr Elliott was a doctor with the group I was referred to. I made an appt with him for a couple of days later.

I went in for my appt with Dr Elliott, getting another complete ultra sound and a full sit down discussion on TTTS. Dr Elliott choose to NOT diagnose the boys with TTTS but he did recommend weekly ultra sounds to track their progress because the syndrome can move and change quickly….
So that was it. I found out my babies were boys and I got to enjoy that news for approximately 10 minutes before the words twin to twin transfusion syndrome were said. Well, at least one of the expert doctors on this was in town and was NOT diagnosing them yet. This had to be good, right?

Houston: We Have A Problem - August 5, 2010
July 26th – it is time for another ultra sound – one a week to see if/how the twin to twin transfusion syndrome is progressing. 10am ultrasound now shows a “stuck” baby. One of the boys’ sac, Eli’s, had reduced down to almost nothing. It broke my heart to see his little body all curled up and unable to move. So, it is official. The boys have TTTS and something must be done about it. The doctor sends me directly from the office to the OB Triage at Good Samaritan Hospital in Phoenix.

I am terrified. Trying very hard not to cry, I call my mom in Tucson, let her know what is going on and ask her to drive up and be with me. I drive myself to the hospital. I end up being a direct admit to the hospital and am put in a room in labor and delivery.

The doctors come in to talk about options for the babies. We could do everything from doing nothing, amnio reduction, surgery to selective reduction…… I was also told that if I choose the amnio reduction it would be very unlikely that I could choose surgery later as many surgeons will not do the surgery after an amnio reduction as it can cause complications for the surgery. The surgery is endoscopic laser ablation. The surgeon lasers the blood vessel connections between the two different umbilical cords so that each baby then gets his own blood supply and one cannot take from another. The problem with the surgery is that there is no one in the state of Arizona who does it. I would have to go to Houston or LA and possibly pay for EVERYTHING out of pocket. I did not even consider the surgery as an option and after some quiet time went with the amnio reduction.

The reduction was done that night. The doctors went in with a needle using an ultrasound machine to stay away from the babies and with gravity allow the amniotic fluid to flow out of the largest sac, Nolan’s. The maximum they will remove at one time is 2.5 liters. They have found any more can cause problems with the placenta. So they removed 2.5 liters from Nolan’s sac in the hopes that would give Eli’s space to grow.

I spent the night in the hospital and was released the next morning with another ultrasound scheduled for the 29th. When I went in on the 29th I learned I had another “stuck” baby and that Eli actually had less space than he had before. For it to get worse in 3 days after the reduction, the likely hood that another reduction would make any difference was very small. I was going to lose one or both of my babies without the laser surgery. But what if I had just killed any chance of surgery by doing the reduction??? And, how could I make this happen financially??? I went home and asked for help from everyone and anyone I could think of.

I was sent back to the hospital on the 30th and met with the doctors again. The hospital got in touch with my insurance to start the approval process to have the surgery in Houston and one of the doctors got on the phone with one of the surgeons in Houston and spoke with him directly concerning my case. Suddenly, I was scheduled for surgery in Houston on August 3rd and was told by the surgeon in Houston not to worry about my insurance covering it or not for they had ways of getting it taken care of.

And so it was – I went from thinking I had to consider selective reduction to save one of the babies lives to having a glimmer of hope through the surgery that both boys would make it through. With the financial support of my amazing family, my mom and I were on a plane to Houston on Sunday, August 1st to meet with the doctor on Monday the 2nd for surgery on Tuesday the 3rd.

The doctor’s appt on Monday went well. After a 2.5 hour ultrasound and a 45 minute consult the doctor said I seem to be a good candidate for the surgery. They work out of Texas Children’s Hospital and had done 206 of these surgeries to date. They said their survival stats were the best in the country – 70%-75% of patients go home with both babies, 15%-20% go home with one baby and about 10% lose both babies…..

Surgery was scheduled early morning on Tuesday, August 3rd. I was in the operating room for about 1.5 hours and the surgeon called the surgery a success. There had been 7 connected blood vessels between the two boys, the doctor separated all of them. No complications. The ultra sound to see how the babies were doing was scheduled for the next day. I spent the night in the hospital sucking on lifesaver popsicle praying that both of my boys would make it through this surgery and that I would hear two heart beats at the ultra sound the next day.

I heard them. Two heart beats.
Mom and I flew back home to Phoenix on Thursday the 5th.

Preterm Premature Rupture of Membranes - August 26, 2010
Wednesday, August 25th, 26wks gestation. The boys were doing well after the surgery. Both sacs were almost equal and I could feel both of them moving around inside of me, making me smile. I woke up at 7am after a really uncomfortable night of pseudo sleep and knew something was wrong. I got out of bed quickly as a rush of liquid ran down my legs. I knew without a doubt that my water had just broke. All I could keep saying to myself was “No. No. It’s too soon. No!”

I got dressed and drove myself to Good Sam and checked in to OB triage. Another call to my mom in Tucson asking her to drive up and be with me. To no surprise to me the nurse confirmed that my water had broken and they admitted me to the hospital. They moved me in to labor and delivery and started me on a 48 hour dose of magnesium sulfate to stop any contractions, three rounds of antibiotics to stave off any type of infection and steroid shots to help the boys lungs to develop due to possible delivery.

If you have ever gotten magnesium sulfate you know the hideousness that it is. It works as a muscle relaxer so that at the end of the first day I had to use a “bedside commode” since I had fallen on my way out of the bathroom already. At the end of the second day I could barely lift my hand to eat and could not focus my eyes to save my life. But it did stop any contractions and allowed me to get both shots of steroids to help the boys’ lungs develop.

After that I was moved to an antepartum room for my hospital bed rest. I was going to be in the hospital until I gave birth. They don’t really know why someone’s water will break early. Sometimes it is due to an infection of some type and then after it breaks it is easy for infection to set in since the protection of the amniotic fluid is no longer there. My blood and body never showed any type of infection.

During my stay in the antepartum room the contractions came and went. I had been on nifedipine since August 10th to stop preterm contractions. They did not continue that medication but did give me shots of terbutaline a couple of times to help stop them. My cervix never dilated so they tried to keep a balancing act of keeping me pregnant as long as possible and making sure there was no danger of infection to the boys or I in the process.

The nurses would hook me up to the fetal monitor every evening to hear the babies heart beats for an hour. It was always comforting to hear them but since they were always on the move, especially Nolan, they would have to move and readjust the monitors and sometimes just sit with me and hold them so that they could track. Both heart beats were always strong.

I stayed in antepartum until September 1st. I was then moved back to labor and delivery because the contractions had become strong but since my cervix was not dilated at all I might be needing a c-section soon and the labor and delivery rooms were closer to the operating rooms. The doctors decided to give me another round of magnesium sulfate, this time not necessarily to stop the contractions but because it has shown to offer a some type of protection from any neural problems that could come up for the boys. The second round of magnesium was worse than the first. It stopped the contractions but really messed with me. BUT every day that my boys could stay inside of me was equal to 2-3 days outside of the womb so it really didn’t matter how I felt.

During this stay in the hospital I didn’t have many guests and I did not want them, other than my mom who was always there. My entire focus was keeping these boys safely inside of me. I slept with the two teddy bears that I had received as gifts from my friend John. I held on to them tightly. I talked to the boys, visualizing the three of us together with Divine light shining down upon us keeping us safe and healthy. I prayed for strength, protection and the ability to accept whatever may happen for the higher good of the three of us. This was a very private time for me and my sons. I know that my decision to not have visitors seemed strange but it was what I needed for me to get through this very scary time.

The boys were at 27 wks gestation.

Birth Day - September 4, 2010
As the second round of magnesium sulfate began to wear off and I started to regain my senses the contractions began again. Throughout the afternoon of September 3rd they went from almost unnoticeable to uncomfortable to painful. They ranged from 15 to 6 minutes apart. Finally around 10pm (I remember the time because we were watching MASH on tv) I asked for pain relief, whatever they would give me. They gave me Vicodin and morphine. The doctor came in to check my cervix, not dilated, at all. If I was going to have any babies anytime soon it was not going to happen naturally. Of course I did not WANT to have them any time soon. They were only 27 weeks and 2 days gestational – 13 weeks early….

During all of this I am attached to a monitor to track both babies heartbeats and my contraction levels. So I can hear the boys heartbeats in the back ground. I noticed as we got later into the night the machine would lose one or both of the heartbeats during my contractions. That scared me. I didn’t like not hearing both of my boys hearts. As we got closer to midnight the pain of the contractions was too much for the pain meds they had been giving me and the contractions were inching closer and closer together. My mom had decided to spend the night in the room with me and got the nurse for me. The nurse came in and sat with me to try to track the babies heartbeats and brought more pain meds with her. I tried laying in different positions for my comfort and for easier baby tracking. That didn’t work. My blood oxygen levels started to drop and the babies heart beats, especially Nolan’s started dropping with each contraction sometimes all the way down to 50 a minute (normal for him at that point was around 150-165). It would bounce right back up after the contraction was over but they were coming so quickly there was little rebound time.

The nurse left for a couple of minutes to find page the doctor and the pain got so intense, like nothing I had ever felt. I could not move in response to it because of the baby monitors on my belly. I did not was to dislodge them. It was so much more important that the nurses be able to tell that the babies were okay.

Suddenly the nurse came flying back in the room followed by a couple of other nurses and a doctor I had not met yet. As the doctor walked through the doors she told me I was being moved to an operating room. One of the babies was not tolerating the contractions well and we needed to do an immediate c-section. I heard one of the nurses say heart rate of 15. I knew that had to be my Nolan. He was the one who was head down at the bottom of my uterus. At this point I went into shock and much of what happened is a blur. I suddenly had, what seemed to be, a room full of personnel. One was one my bed, over me attaching and unattaching things. They gave me a shot to stop the contractions and started rolling me out of the room. I saw someone talking to my mom as they took me out. I don’t remember feeling anything as I went into shock. I heard them discussing which OR room they would be using. Was the NICU advised that there were going to be twins? I watched as they put on their OR gowns as they ran and pushed me down the hall. That was when I started to shake.

We came through the doors of the operating room and I moved to the operating table. My body was shaking so badly in shock that my legs were bouncing off of the table, my shoulders were shaking and teeth chattering. I heard the doctor ask for warm blankets and they wrapped me up in them. It slowed my shaking but did not stop it. I tried to focus on my breathing. The doctor who was going to give me the spinal block introduced himself and explained what was going to happen. He asked me if I had any questions and I shook my head numbly. I could hear the nurses in the background counting the number of instruments and tools out loud. I heard the doctor telling them they needed to speed it up. A nurse came up to me and helped me to sit up so that I could get the shot. I will never forget how she put her arms around me to hug and hold me up. She told me to put my head on her shoulder. I did. If I saw her face, I have no memory of it but whoever she was, in that moment, she was an angel to me. I vaguely remember being fearful that the shot would hurt. Ha! I think I was in such shock they could have done the c-section right then and there and I would not have felt it. Instantly I felt a rush of warmth shoot down from my rib cage down to my toes. Relief, the shaking stopped.
Somewhere in all this surgery prep my mom showed up in her scrubs. She was going to be there with me. I had no idea. The anesthesiologist introduced himself and he and the doctor explained what was going to happen next during every step of the surgery. I felt tugging and pulling as they cleaned my belly. Once they started it seemed almost immediately that Nolan was out. I felt a release of pressure. No crying. At this point I was VERY thankful that I had spoken with one of the neonatalogists about a week earlier. He had told me that in c-sections for premature births the babies rarely ever cried so I was not to worry if I did not hear any cries after birth. He also told me that each baby would have his own doctor and nurse to care for it the minute it was out of my body. I did hear them call his birth time of 1:55am. I looked at the clock and saw they were right. Soon after that someone came and got my mom so that she could see Nolan. I closed my eyes. I was overwhelmed. I was so filled with emotions that I was effectively numb. My mom later told me that Nolan was blue when he came out. His initial apgar score was 2 within the first minute of life (zero is the lowest)

Now it was time for Eli to be born. I heard the doctor saying that she could not find him. (Eli spent most of the pregnancy up near my rib cage on my right side.) Then I heard grunting. It was a strange thing to hear coming from the doctor. She told the anesthesiologist that she needed something to stop the contractions. She said it twice and then a couple of minutes later Eli was born. I learned later that the contractions had been sucking him deeper into my uterus and they had to do a T-incision to get to him. The grunting I heard came from the doctor as she literally had to use all of her strength to get a hold of Eli and pull him out. Again, no cry. Birth time 2:00am.

I think, somewhere along the way someone told me both babies were fine. They started to stitch me up and the neonatologists brought both boys past me so that I could see them as they left the OR to go to the NICU. Both of them had breathing apparatuses on so it was difficult to see them. But they were there and they were tiny. My mom went with them. It took about a half hour to close me up. On my way out the OR to recovery the doctor told me that I had needed a T- incision so if I was going to have anymore children I would have to have a c-section, vaginal delivery was not an option. I nodded. Had I even spoken a word during this whole experience? I really don’t know.
Nolan and Eli, my babies, were born alive, both of them. They were 13 weeks early and they were going to face many challenges in growing and developing. September 4, 2010 – Birth Day – I couldn’t wait to see them.

Tuesday, December 31, 2013

25 Events of 2013 - In No Particular Order

    1.       We got Nolan’s official diagnosis in May – severe autism.
    2.       A beautiful friend of mine died unexpectedly in his sleep in February – I miss you John.
    3.       Finally had the finances to do some of the things I had been wanting to do in Eli’s name since he died in 2010. Every single penny and every single moment was worth it. 
    4.       I became a published author again! Thanks Tova!  
    5.       Police, CPS, family court and lawyer’s fees – oh my……
    6.       Nolan started developmental preschool. He is absolutely thriving there.
    7.       Helped support some fellow baby loss moms in connecting with their child on the other side, on their own.
    8.       Started back to college to finish my degree. My sister was my inspiration.
    9.       I have heard my little man’s voice. Nolan finally picked up the first sign. We had been working on it for months and he hasn’t looked back. He’s now up to 5 and starting to sing the alphabet.
   10.    I didn’t get to see my niece and nephews in Tucson as much as I wanted to this year. I miss them.
   11.    Took HUGE steps in healing old wounds, forgiveness of myself and others, reclaiming my power and remembering to trust in the Universe.
   12.    Months and months and months of being up 2-4 hours in the middle of the night with a little boy who doesn't sleep well.
   13.    Amazing moments of cuddling, silliness and love with my little one in those 2-4 hours of middle of the night awakeness.
   14.    Knowing I am stronger than I ever thought I was, and I have always thought I was pretty strong.
   15.    Finally coming to the point of starting to create holiday traditions for my little family. It has been a hard road.
   16.    Understanding that the new year doesn’t move me further away from Eli. He comes with us.
   17.    My little man sat on Santa’s lap!
   18.    The loss of some old friendships.
   19.    The gain of some new friendships.
   20.    Knowing how lucky I am to have my client base, some who have been with me for years now and they always recommend me to others.
   21.    Being acknowledged as a spiritual mentor to a wildly successful, beautiful and spirited young woman.
   22.    Being told yesterday that I do not look anywhere near 45. I feel like the past 4 years have aged me more than any other time in my life. 
   23.    I finished Eli’s picture book and got his beautiful Molly Bear.
   24.    I am honored to continue to be a faculty member at Southwest Institute of Healing Arts.
   25.    Remembering in all of this that I choose what it means. And I know it means I am blessed.








Friday, March 1, 2013

Sacred Stories


I am humbled and honored.

I am working on a public blog for TTTS parents to share their stories and experiences of TTTS. I truly hope and intend that this can become a world wide force in building awareness for Twin to Twin Transfusion Syndrome. We had 276 views to the site today and over 700 in the past week!

In this work I have been honored to receive the beautiful, emotional and heart breaking stories from my fellow TTTS parents. Every time I open my mailbox and see another message I feel as though I am being gifted; that this parent has trusted me with their sacred story of love for their children and the fight they all fought. I hope that I can create the space of healing that their stories deserve.

Please visit the blog and check out the amazing stories being shared.
TTTSParents

Friday, February 1, 2013

Love in a Walk to the Mailbox



I loved walking to the mailbox with my little boy this evening. The Arizona sunset. The air was slightly cool. My little boy wouldn't walk out of the front gate without holding my hand. As I was closing the gate his little hand was reaching up searching out my bigger one. This walk to the mailbox was a perfect 5 minutes of love.

Tuesday, December 25, 2012

A Month of Small Celebrations - December 25


Small Celebration

Santa came last night.



Christmas Day - I went to sleep last night asking Eli to give me a sign on Christmas Day, just to say hi and Merry Christmas.  I woke up and took a quick look at Facebook. Someone posted this video, just because. I had this song played at Eli's service.


It was like Eli wished me "Merry Christmas mama, from Somewhere Over the Rainbow."



I didn't get to see all of my family
But
I had a wonderful Christmas with Nolan, my mom, Lucas, Whittney and Aden.
I learned that Nolan isn't that interested in opening presents. Actually didn't really care about it at all except for the golden gift from grandma - an "Alpha Pig" action figure. One of the characters from Nolan's favorite PBS cartoon, Super Why. He was soooo excited he just didn't know what to do with himself. He was clapping and laughing, almost over stimulated.

This is him studying Alpha Pig with he was still in his packaging.



Thursday, December 6, 2012

A Month of Small Celebrations - December 6


Small Celebration

I have two today.  :)
First thing that I am celebrating is my sister and her amazing job of completing her bachelors degree in education! She texted me a picture of the letter from her school congratulating her on her accomplishment. And she has decided to go on to getting her masters in special ed! A choice close to my heart. She has inspired me with all the focus she has put into her life to make the changes she decided she wanted. I could not be more proud of my sister right now, for all that she has done. 
And
I am a member of a group of TTTS parents who reach out to other parents who have recently lost their child(ren) to this syndrome. We offer to send them a grief package. I am thrilled to say that I have been a member since the beginning and that I am honored to be a part of such important work. Losing a child(ren) during pregnancy or after birth is a very isolating event. So few people know what to say or do to support the parent in their grief and the grief can be so debilitating that explaining or showing others what they feel or need demands more energy than they have. I know that there were times when remembering to breathe felt like it took all of my focus just to complete. So we personalize our grief packages to the loss experienced by the grieving parent. We try to send little gifts that say "I remember your child(ren) and I grieve their death also". I just sent out my 5th package today. While I absolutely hate that there is a need for this group and I hope that one day that need will stop; it means so much to me that I can be a part of this amazing group of loving and supportive people. Once a child has died we can't stop the grief. We can't fix the grief. But hopefully we can make it a little less lonely. When I say it is my honor to do this, I mean it. 



Here's a picture of my sister and my son from August 2011.

Friday, September 21, 2012

It's 1am

It is exactly 1:06am and I am up and looking at pictures of identical twins. Why in the hell would she be doing that, you might be asking... I am not sure I know the answer. Because I miss my identical twin boys. They are not identical now. Why is that important? I don't know. Maybe it's not. Maybe it is just that one of my boys is here with me and one is not. And right now at 1:11am I am feeling it. Not crying though. I am feeling resignation and anger all at the same time. Resignation - it is what it is and there is nothing for me to do to change it. Anger - it is what it is and there is nothing for me to do to change it. One reason, two emotions.

This grief is not for the weak and you cannot know how I wish I could be done with it. I cannot count how many times I have heard "The grief does not end. It changes." and I know that my love for Eli will not end just be transformed, as it already has. Thing is, I am not really feeling all that transformed right now.

As another mother who also lost one of her twins to TTTS just said, "but I've had more good days than bad but there are still days I don't want to get out of bed.." I understand that sentiment. I have lived that sentiment. This process truly is a process that demands the choice to continue getting up and living every single day and sometimes, on bad days, every single hour.  It is a repeated choice. I am blessed to have this choice, and yet, I still wish, sometimes, to not get out of bed and to hide from my life, just for a little bit. Truth is though, that does not work either. It is actually easier to get up, get out, live, laugh and love, love and love some more. But sometimes I still wish.

I am having some of my TTTS friends going through VERY difficult times right now. One beautiful mama had to put herself into a mental health facility to try to support her grieving process. Because grief is ugly but grief that is stuck feels evil to the soul. Another beautiful mama just found out her 3 week old rainbow son has neuroblastoma. What do you say to a mother who lost both of her little girls to TTTS and when she goes on to have her rainbow baby she learns he has cancer? I don't know, so all I have is I love you and I support you in anyway I can.

I would humbly ask that you hold these mama's and their families in your prayers or in love and light or whatever it is that you do to keep hope and strength and courage and love flowing their way.

It is now 1:26a. I believe I am done looking at pictures of identical twins now. It is time for me to sleep. So I will end with the picture of my beautiful little boy. This is his thank you card to everyone who came to his and Eli's 2nd birthday party. It was a great turn out.  :)



Saturday, September 15, 2012

Two Years and Love

The second anniversary of Eli's death. The anniversary of the death of your child is something no parent ever wants to experience. As I was laying in bed this morning I flashed forward to the 20th anniversary of his death and I quickly wondered if I would be crying that morning too after crying myself to sleep the night before....


While I was driving in the car today I heard this song - many times. I kept hitting replay on my ipod.
http://www.youtube.com/watch?v=X1Fqn9du7xo
Adam Lambert - Whataya Want From Me
I know, might seem corny, but just hang with me for a second and keep reading.

From the first moment I heard the song in 2010 it brought tears to my eyes. The lyrics moved me but I couldn't completely understand why, until today. That was when I started to cry - I got it..


Hey, slow it down
Whataya want from me
Whataya want from me
Yeah, I'm afraid
Whataya want from me
Whataya want from me

There might have been a time
When I would give myself away
(Ooh) Once upon a time
I didn't give a damn
But now here we are
So whataya want from me
Whataya want from me

Just don't give up
I'm workin' it out
Please don't give in
I won't let you down
It messed me up, need a second to breathe
Just keep coming around
Hey, whataya want from me
Whataya want from me
Whataya want from me

Yeah, it's plain to see
That baby you're beautiful
And there's nothing wrong with you
It's me, I'm a freak
But thanks for lovin' me
Cause you're doing it perfectly

There might have been a time
When I would let you slip away
I wouldn't even try but I think
You could save my life

Just don't give up
I'm workin' it out
Please don't give in
I won't let you down
It messed me up, need a second to breathe
Just keep coming around
Hey, whataya want from me
Whataya want from me
Whataya want from me

Just don't give up on me
I won't let you down
No, I won't let you down

So
Just don't give up
I'm workin' it out
Please don't give in
I won't let you down
It messed me up, need a second to breathe
Just keep coming around
Hey, whataya want from me

Just don't give up
I'm workin' it out
Please don't give in
I won't let you down
It messed me up, need a second to breathe
Just keep coming around
Hey, whataya want from me
(Whataya want from me)
Whataya want from me
Whataya want from me


This had been my song to my higher self, my soul, my God.
Screaming at the top of my lungs -
What do you want from me????
Begging them not to give up on me as I figured all this out. Since the pregnancy diagnosis in March 2010, I have been smacked up side the head, again and again. Some of them were obvious and beautiful blessings (the pregnancy - twins) and some I had to work REALLY hard to see the blessing (there are still some I haven't shared completely yet). Just as I would catch my breath and balance myself again something else happened. None of them felled me permanently but my knees have been bruised for awhile now....

All of the words are perfect and exactly what I said and pleaded for from above and within -
 - Slow it down
 - Yeah, I am afraid
 - It messed me up, need a second to breathe
 - Just keep coming around (please)
 - WHAT DO YOU WANT FROM ME?!?!?!?!

The answer, I hear now, I understand now. You want me to love, know love, give love, BE LOVE.  All of these things I have experienced since March 2010 have broken down my denials, my illusions, my protective barriers. I have been laid bare and I now understand that the ONLY thing that is real and worthwhile in this human experience is Love.

And so I will listen -
Stop fighting.
I will Love.
Loving takes courage.
Loving is not for the weak.
It demands vulnerability.
It demands surrendering.
It demands being real.

And it is the only option in my life now - to Love.


So, I chose to make this day, September 15th, the first annual Love Out Loud Day. I deliberately chose Eli's angelversary because of all I have learned of love during my pregnancy, the boys birth, Eli's death and every day after that. Love is not the absence of sadness or grief. Love is a choice in the face and experience of absence and grief. Often they go hand in hand. Sadness and grief do not cancel out Love, they just makes us work harder to see it. On September 15, 2010, I loved and had to learn how to care for a premature baby with some special needs and a baby who had died - at the same time. For my own sanity and ability to function I HAD to come from a different place in love. I HAD to go bigger in my understanding of love. So I choose today for Love Out Loud Day. It was the only day that made sense for me.


I am already beginning to kick around plans for next year. I want to plan some community events in support of Love Out Loud Day.  I am still working on the website for it - www.loveoutloudday.com.


All this because two little boys came into my life on a roller coaster experience. One was able to stay with me and one needed to go back home.

Thursday, December 29, 2011

Love, Joy and Believing

I am taking a 10 day countdown to 2012 online and there are some posts I made that I would like to share.


For Deceember 24th - My Biggest Personal Goal for 2012 is....
I bought 3 Christmas ornaments this year - one each for my sons and one for me. They are matching silver/red stockings with a word written on them.
- Nolan's says Joy - because he is my biggest joy in my life.
- Eli's says Love - because he has helped me to understand love in a way that only losing a child can.
- Mine says Believe - because I have lost my belief in things and to live my life in Joy and Love I have to have Believe.
My biggest personal GOAL for 2012 is to Believe again.

These are gifts I bought for myself or received as gifts from Eli.

For December 25th - Something I did in 2011 that makes me really proud is ....
That I have provided for my son and I. Single and self employed has not been easy but with the loving help of my mom and some stubborn determination I have done it. A nice place to live, lots of time together, a "working" relationship with his dad and a stable, consistent, loving, safe home. He is a happy little boy. We aren't doing too bad and I am really proud of that. :)
Nolan and I on Christmas night

I am writing about these two posts because they made me think. :)

I realized that I have always believed that it all works out in the end and if it hasn't worked out yet it is not the end. This thought has moved me through much of my life. When I see Eli's death as the end then there is no way in hell I can actually believe that anymore - so what do I believe? I think the death of a child, especially your child forces you to revisit everything you have ever thought, perceived or believed to be true. I don't think revisiting our beliefs is a bad thing
BUT
I can tell you it can be a VERY hard thing. My belief in love and the goodness in this world has helped me move through much in my life. It is time for me to believe again. When I remember what that belief is I will let you know.

Concerning the post on proudest thing for 2011 - I had never thought about it until the moment of that question. I just did what needed to be done and I continued to love, through the tears and the fear and the pain and the aloneness
AND
look what I got? A life not simple or easy or without pain but so full of love and light that I was amazed. :)

Thank you my friend Tova for posting these questions.
www.findingmymuchness.com