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.

Blogging Again.....

I have decided to step back into blogging our story here. I pretty much stopped in 2013. I did so out of fear. I unexpectedly found myself in the middle of an ugly family court situation with police reports, CPS meetings, lawyers, judges and court rooms.  I was terrified for my family and I did what I do and shut down. I stopped talking to only a few who knew what was going on and I worked very hard to process everything and make the best decisions I could for myself and my son.

Two and half years later, I have decided to stop being fearful. I will be updating some things from the past two years, back dated, and then start moving forward from there.

For those of you who have been reading my blog, thank you for sticking around. And welcome to anyone who is starting in new.

Much love ~

Your Children are Not Your Children

"Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday." - Kahil Gibran

Eli, your short life is not what I would have chosen for you or me or Nolan. Not even close. I would have chosen for you a quiet, joyful childhood, growing up with your brother. You would have experienced the regular childhood and adult experiences of laughter and tears, failure and success, happiness, creativity, friendship and being in love and having your heart broken - And you would have used all of those experiences as a powerful force of love to change the world.......

But I now know that you had your own contract and agreement with Life. I was right that your spirit was meant to be a force love on this earth but in a very different way. Your spirit lives through in Nolan and helps him take on and conquer the challenges in his journey in Life. You are in his smile and laughter and in his tears at night when he has cried out for you. When he says your name and points to your picture. I know he knows you.

Your spirit lives through me. In everything I do, everything I am - mothering your brother, teaching my students, working with my clients, caring for myself, my relationships with everyone. My goals and intentions for my life were set in movement with the birth of you and your brother and clarified with your death 11 days later. I work to be a force of love on this earth because of Nolan and because of you. Every day I unwrap more gifts from you and your short time on this earth. Your spirit is eternal and while my mama's heart still desires to hold your hand, hug you, kiss your face, hear your laugh, see you play with your brother, I know that you are here with me and that love continues on.

"A luminous light remains where a beautiful soul has passed."
You left this earth five years ago today. Your light is just as strong.

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 24^th 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 12^th, 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.

Regrets

For most of my life I actually have had very few regrets in my life. I have almost always done what I thought was best based off of my internal guidance and intuition. It has guided me well. The only times it has faltered were in times of fear. As with most people, when I am in fear I am unable to tap into my inner knowing, listen to the wisdom and do what I knew was right for me and my life. My TTTS pregnancy, hospitalization, birth and the boys NICU stay was a time of deep, cell shattering fear. Not fear for me, never fear for me but fear for my boys and their lives.

So why do I bring this up now? A couple of friends of mine posted on facebook a wonderful video a loving family created to chronicle their child's 10 day life on this earth. So many pictures with family and friends. Time spent together with clear knowledge that every moment was a moment stolen and a gift of love. While I know that there were tears and pain and sadness, this beautiful family seems to have been able to remain in the beauty and love of the moment. They were present and loving what was now. Here is the video, if you wish to watch it.

And so I regret....
I know that my love and joy for Eli's life was as strong and powerful as the lovely family in the video
And
I was so filled with fear and physically exhausted from the experience of TTTS I did not share the amazingness of my boys during my pregnancy. My sister asked for pictures of my pregnant belly and I straight up refused. I am saddened that I do not have more of those. I am saddened that I did not have more joy during my pregnancy. I did not speak to people while I was in the hospital on bed rest nor did I want anyone to visit me. It was fear, all fear, for what might happen. I was frozen inside and I internalized it all.

Now of course I could have never guessed that Eli would catch an infection and end up dying from that infection before he was 2 weeks old. And I wish I had more pictures of him and his family members who came to see him. I wish I would have made a point of others seeing him. I wish. I wish. I wish.

I could say that TTTS took all this from me and in part it would be true. But if I were to be as true and honest as I possibly can be, from the deepest part of my being, I would have to admit that it was my fear of the future and what might happen that truly took away the moments I now regret never happening during Eli's life. I know that I had every right in the world to be as fearful as I was and I have been complimented on just how strong and brave I was. And now almost 3.5 years later I can understand and say publicly that my fear stole things from me just like TTTS did. I had little control over the TTTS. I had complete control over my fear.

So, what do I do now?
I grieve and forgive all that I believe I lost due to my overriding fears.  Once I have done that I will begin to choose a different way of being. I have understood for a long time that fear of the future steals from the love and the beauty of now. I am finally strong enough to experience the grief of my fear, heal it and choose to be different for myself and Nolan. Always with a undying love and gratitude to one of my most beautiful of teachers, my son Eli.

I let go of my fear and regrets, forgive, and move forward and learn how to choose love over fear
Every
Single
Time

Broken Open

Saw this in my email today - 
"Only in hindsight, Piperlyne, will the miracles become obvious, will you see you were guided, and will you find there was order all along.
"Otherwise," as you once said, a long, long time ago, "it would all be too easy..." ~ TUT

Reading this I remember the vision I had of myself, a while ago, still in spirit surrounded by loved ones going through the different lives I might choose to reincarnate in to. We hit on this one and flipped through the pages together and as we got to the end I raised my hand and said "I can do this. I am perfect for this!" The story goes, I was so excited about this life I even stopped to chat with my mom while she was carrying me to let her know what my name was going to be. Similar to what my boys did with me.
WOW - what I ride I have chosen.

Sometimes someone is placed in front of me and when I talk to them, I can see it in their eyes, they think I am broken because of what I have gone through. I guess used to be, I was broken open, but I am not broken any longer. But it does remind me that I am sharper with my words than I used to be. I am quieter than I used to be and I am more cautious than I used to be. I am also stronger than I used to be. I take much less for granted than I used to and I love deeper than I ever have before. 

I just hope that I am not lying to myself. I don't want to be broken.

Two and a half years

It is a strange thing. Getting older has never really bothered me so my birthdays never really bothered me, until recently, and it is not because I am getting older.
My birthday is one day off from the exact 1/2 year of Eli's death. It is strange how certain days take on different meanings as time goes on. Nolan and Eli were born on September 4th. Eli died on September 15th. My birthday is March 14th. I have noticed that the time around my birthday is almost as emotional at September 15th is.
I think it is a combination of things. My birthday indicates another step in time that I am taking away from my baby boy. Another progression in life that I am taking that he is not here to take too. And I just miss him. I have been feeling my grief for the past couple of weeks; bursting out in tears at something on the tv, crying myself to sleep, being distracted and disorganized. I think Nolan felt it too tonight. He was clingy at bed time wanting extra cuddle time before sleep.

My birthday was quiet yesterday. I did homework. Nolan and I went to target and to the chiropractor. She did some great work on me, helping me with the facet joint that still hurts sometimes from the car accident. She did some great cranial work on Nolan. And then Nolan and I had dinner with my mom at Carrabba's. (I love their calamari!) I had my pj's on by 8:30p and was happy about it. I was hurting from the chiropractic adjustment. It's also been a month since my friend John died. I was missing him too.

Today I had an appointment with an RN, Peggy, from ALTCS (Arizona Long Term Care Services) so that she could evaluate Nolan for ABA services through Department of Developmental Disabilities. I always dread these things. I so desire to speak of Nolan in positive terms, talking about all the growth and development I see him do daily. It is almost physically difficult for me to talk about his delays or limitations. But that is what I did, what I had to do, so that he could be considered for services. Peggy was kind and seemed to be rooting for us. She asked me about his medical history and of course I talked about the pregnancy, TTTS, the laser surgery, PROM, premature birth, the NICU and Eli. This, very possibly, could have been the first time in my life that I did not cry as I spoke of our challenges and how one of my little boys died. Because she was an RN, she was interested in some of the medical explanations for TTTS and I was happy to educate. She looked at me and said "This has been a hellish 2 1/2 years for you, hasn't it." I nodded and once again did not cry. That is when I usually do, when someone makes a kind, sympathetic comment, but not this time. I wasn't holding it back. After 2 1/2 years I am stronger in talking about it. At least sometimes. It seems as though Nolan's capabilities/challenges put him right on the edge for approval of these services. She said she may call me back for some clarification if he scores close or I would just get a letter. If he doesn't get approved right now Peggy also said to reapply at his 3rd birthday. Se we wait.

I see the subtle changes and growth in my little boy every day like how he has gotten to the point of grabbing on to the railing with one had while holding my hand as he walks down stairs. This is such a huge improvement from when going down stairs would overwhelm him so he would just try to dive down head first. These are exciting and wonderful things for my little boy. I am so proud of him. He amazes me EVERY SINGLE DAY.

And finally for my birthday I had my mom look at my solar return (astrology) chart to see what this year had in store. We talked for awhile but the thing I remember the most was her comment "No more mister nice guy." This is my year to stand up and take chances to make big changes.

So while I make those big changes I am going to celebrate those small changes too.

I miss you my sweet Eli.
I miss you, my friend John.

Picture of John feeding Nolan. 

A Month of Small Celebrations - December 16

Small Celebration

There are times when my mind moves so quick that my typing cannot keep up with it. This is one of those times. Guess we will see how this works.

Since I learned about the deaths in Newtown, CT I have been on edge. I felt like I was wandering around lost and nothing I did could change that. And then finally, tonight I cried. I cried in pain and sadness for the parents left with out their children to care for and watch grow up. The tragic end to those 20 lives on Friday touched off my own grief and sorrow that I still carry with the death of my Eli. Tonight I stepped outside in the cool dark night and cried as memories of the morning of Eli's death ran through my head. His heart rate was slowing but when I sat next to him talking to him, touching him, he stabilized  He knew I was there. And it held his death at bay. For a little while. Until it didn't anymore. I remember sitting numbly on the couch in the room when his heart stopped and the medical team worked to revive him. I didn't cry. I didn't move. I just stared. When they were able to get his heart beating again I looked to the doctor and he nodded and I went back to his bedside. I talked to him, told him I loved him and that I would give him everything I had to help him fight. But if he needed to go I would be ok. He started to crash again and the doctor asked me if I wanted them to begin resuscitation again. I looked at his little body and I knew the fight was over. I screamed no, in a voice that still does not seem like it came from me. And that was it. They quickly removed him from all of the tubes attached to him, wrapped him in his star blanket and handed him to me to hold. He died in my arms. I can see all of this like it happened just moments ago and sometimes, like tonight,
 it feels like it was just moments ago.

So, why am I sharing this now? Because I finally cried the tears I needed to so that I could understand and share what I am feeling about what happened in Newtown. My situation is different but I understand the death of a child like only someone who has experienced the death of a child can. I am familiar with the road those 40 parents and hundreds of family members and friends will walk, crawl through and throw themselves down on in rage, hopelessness and bitter ugly grief. I am still on it. I feel their pain, truly feel it in my own body and I wish that somehow I could do something so they would not have to experience it too. But I can't. Not now. Their children are already gone from this earth. And there is nothing that can be done to change that. But I believe that there are things we can do as a society to try to stop it from happening again.

My small celebration tonight was to have my son fall asleep in my arms. Now that he is a big boy he does do that very often any more. But tonight, I got to hear him breathing, watch his eye lashes flutter. As he relaxed fully and completely in my arms, safe. For this moment, safe.  Which actually is not a small celebration but one of the biggest ones I could have.

This picture is of my Nolan at about 3 months old, or if he had been born on his due date, maybe a week old. This is how he fell asleep in my arms tonight. How I wish I had both my boys here to rock to sleep tonight.

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.

A Month of Small Celebrations - December 1

December, Christmas, the holidays.

This is my third one without my son Eli to celebrate with Nolan and I. The first Christmas I was numb. Nolan had been home from the NICU for only a month and Eli had only died three months earlier. I was struggling to remember to breathe and still trying to heal from a traumatic pregnancy and birth, an extensive c-section and a stressful grief filled hospital stay. I was caring for a medically fragile child and filled with worry. Sometimes getting out of bed was an accomplishment.

The second Christmas, last year, I was rear ended while sitting at a stop light on December 5th. It was a five car accident and I was hurt. I went to the emergency room that night and then went home. Once again, sometimes getting out of bed was an accomplishment. I lived off of pain killers for months. I couldn't lift Nolan up at all. If it wasn't for the help of my mom I don't know how I would have cared for him. Christmas was tough but once again I was numb to the full experience of not having Eli here with us.

This year I have come to realize that this year is going to be the time for me to fully experience the holiday grief. I have been crying regularly and at unexpected times for the past couple of weeks. I know this grief needs to be expressed and released and I want to do that. I will allow myself to cry as I need to and honor my sadness
And
Within that I need to make sure that I honor the celebrations of the holidays. I love Christmas, always have. I have some amazing memories of Christmas with my family as a child and as an adult. I want to make sure I continue to have those memories for myself and for Nolan
So
I have chosen to make December a month where I make sure I see the small celebration everyday. And today is December 1st.

Small Celebration

This morning I was able to set Nolan's bowl of oatmeal on his tray. I gave him a spoon and with a little help he fed himself. He was so excited to do it he yelled "YAY!" after the first 5-10 times. When I had to step away from his high chair I took his bowl and set it on the table and he threw a fit until I gave it back to him.  This is a big celebration because this is the FIRST time he has ever been able to have a bowl of food on his tray and not play in it.  His sensory issues would interrupt his eating and it would be almost impossible for him to do this. I am so proud of him! And even better than that he was proud of himself.

In closing I wanted to post a picture I created last night. December is TTTS - Twin to Twin Transfusion Syndrome - Awareness month. We need more general OB's to understand the dangers of TTTS for identical multiples pregnancies. We need more mothers pregnant with identical multiples to be knowledgeable about TTTS. We want more twins+ to grow up healthy and together.

Pregnancy and Infant Loss Awareness - 2012

Thank you everyone who contacted me to ask how Nolan's appointment went with the developmental pediatrician. We had some insurance problems and had to re-book for December. I have to admit that part of me is relieved and happy about the change in date. Nolan seems to be making such great strides. Both his speech and occupational therapists comment every week how much he is improving.  So my plan is to continue the work we are doing along with the NAET therapies and by December the doctor may see a very different Nolan. He has changed so much since the original evaluations in June I believe he will continue to between now and December.

Last week his occupational therapist mixed up some corn starch and water and created some wonderful goo for Nolan to play with. He LOVED it. It really satisfied his tactile sensory needs. If you have a child I recommend it. It's some weird stuff. It helps Nolan to engage his senses feeding his need for more information so that after the play he can approach other things giving them his full attention. The things I have learned so far in this process still amaze me. But even more, Nolan amazes me. Every. Single. Day.

Tomorrow is the Wave of Light for Pregnancy and Infant Loss Awareness month. October 15th is the day when we light a candle at 7pm local time to create a continuous wave of light that moves around the world. I put this picture together and posted it on Facebook for the day. I would be honored if you would light a candle on the 15th at 7pm too.

I miss my Eli.

Sensory Disorders, Autism Evaluation and "I am right. You are wrong."

Yesterday was an interesting day. I want to talk about it but before I do, here is some back story. For those of you who have been following my blog you noticed that I only posted once in July and then not at all in August. There were some things going on with Nolan that I needed to get a grasp on before I would talk about it.

In June I took Nolan to his pediatrician to talk about the fact that he was not talking, at all, not even mama or no! At this point he was almost 21 months, 18 adjusted (due to his premature birth). By all standards he was behind in speech. At that point I had also noticed that sitting still and reading a book was almost impossible and he had started to spin when he would get stressed out. He did not always respond to his name and would not look at people he did not know in the eyes. The doctor referred us to Early Intervention and after SIX different evaluations by eight different people I was advised that he was significantly delayed in speech with moderate cognitive delays. Now I know that many of the people evaluating him did not see the him the way I see him because he was stressed out with them in his home, but to say that I was heart broken would be an understatement. I know his intelligence. I see it daily.

Fast forward a couple of months and Nolan is now getting weekly therapy appointments with a speech and occupational therapist and it has been discussed that he has some sensory processing disorders, mixed to be exact. He seeks visual and tactile sensory input AND he can get overwhelmed and over sensitized by the input he seeks.  So it is a constant balancing act to keep him stimulated and protect him from getting over stimulated. That is what the occupational therapist helps me to understand. She helps me to find him appropriate and satisfying sensory play. Here is the web site on it if you would like more info on sensory processing disorders http://www.sinetwork.org/index.html. The speech therapist helps him create/build his communication skills. I also started with the alternative therapy NAET, which I will talk more about later but here is the website if you want more info http://naet.com/Patients/patientshome.aspx.

And finally Nolan is scheduled next Friday with his first appointment with a developmental pediatrician for Autism evaluation. Which I will talk more about, again, at another time.

So I was cruising the internet at 2am yesterday morning because I could not sleep. Nolan was awake and I had a bitch of a migraine. I was looking up info on Autism and twins, ID or fraternal.  I thought I found a study that said identical twins are diagnosed with Autism more often then fraternal twins or singletons. And I asked if anyone else on one of the TTTS facebook pages I am on had ever heard of this. It started a long discussion about Autism, which happens almost anytime it is mentioned since there are many different people who believe there are many different causes, including that it is not a real diagnosis. Anyway, I got into a disagreement with another TTTS mom and in the end I could not find the link of the study I thought I had seen. I got snappy with her and ended up feeling let down with myself. She expressed that she needed to believe that Autism was genetic because that made it less scary to other TTTS parents. I learned that I needed to believe that Autism was due, at least partially, to environmental causes because then I felt like I had some control over it. I well know that it is our attachment to being right, or thinking we have control can lead us to great pain in our lives. And I know that I am very attached to this, right now at least.

What hit me after much of the discussion had ended was that I was feeling out of control. That there was one more thing to deal with that I did not choose to happen, especially not to one of my sons. I was fighting to believe that there was something I could do to change or alter the possibility of an Autism diagnosis for my beautiful Super Hero Nolan and that caused me to fight with someone else over something as silly as what causes Autism. Don't get me wrong, the effects and challenges of the symptoms of Autism are not silly but to fight with someone about why it occurs or even what it is, THAT is silly. But we were both attached to what we needed to believe to keep us feeling safe and empowered. I got sucked into the game.

Just when I think I have healed from many of the recent things in my life, something else happens and it takes me back to the beginning of my pregnancy. There has been little breathing room, little pause, little quiet and very little adjustment time between. And then when I get attached to an outcome, when I need to be right, like with the Autism discussion, I get angry, frustrated, scared, unhappy and rude. I am continually being given the opportunity to detach in the most intimate and important parts of my life, my and my son's health and well being. I am working on it Universe. I am working on it. I understand that am being pushed to remember that my power DOES NOT come from fighting with someone about their beliefs or perceptions but it comes from my willingness to take what I am given and create something new. That is my true spiritual strength. And - dear Universe, if you would be willing to give me some moments of calm in between, it would be beautiful.

I will end this post with a moment of calm I found between Tobey, the family cat, and Nolan.

I feel very lucky to have caught this image.

PS - This is a rewrite of the "Random Events Overload" post. I deleted that post after realizing that it wasn't really saying what I really wanted to say. :)

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.  :)