Here today, possibly gone tomorrow

Today, is a good day.  Or at least I'm trying to think of it that way.  You see, I'm pregnant...again.  This is our EIGHT baby.  And although my HCG's are 40% higher than last month, the overall number is still so low, that technically, the clinic is calling this a 'chemical pregnancy' and that the result is a 'chemical negative'.  I am, once again, expected to miscarry this sweet child within the next few days.

I'm a wreck - again. I just can't believe we are going through this...again. Guess its a good thing we go see that other fertility specialist next month, for a second opinion.  I just can't believe it....again.  I don't know how many more times I can do this.  I try not to think about it, because honestly my head starts swimming, I get hot and I feel like literally the top of my head will explode and steam will come out.  I try not to think about it so I don't break down completely, but sometimes [like now] I feel awfully close...I'm not ready to give up yet, but I just feel like I'm between a rock and a hard place. I have no choices here...I don't know if I can just give up on our dream of a family.

I'm trying to focus on today, to enjoy what little time I have left with this baby, but I can't seem to stop thinking about the impending loss. I can't process all of this...Lord, please help me deal with all these losses.

"Call me if you need anything"

After Asia's death, we notified everyone with one large mass email, as we just couldn't bear the thought of all those phone calls and the retelling of the details over and over again. Most people responded with a quick line or two via email.  I'll freely admit that this seemed a little odd to me, as it was completely impersonal and I would have thought that condolences were extended via phone call, flowers or cards sent to the home, but perhaps since we sent out an email, they also thought an email response was sufficient.  There were some, who didn't even respond to the email, then there were some whose only acknowledgement of the news was to "Like" a bereavement photo I posted on Facebook.

In our original email, we included a list of things to say/not say to a grieving parent, as I thought it might be helpful to our friends/family who were concerned about what to say to us.  One of the points on the list was that horrid statement "Call me if you need anything".  Our email asked that our friends please NOT use this statement - it would be highly unlikely that we would be reaching out to anyone in our deepest and darkest days, following the death of yet another child.  We asked that if people wanted to help, to take the initiative and come up with something that might be helpful to us and simply do it, or give us the option of saying "Ok" or "No, thanks".  I had hoped that maybe someone would offer to take Sophie to the park, drop off a meal, check on us or something along those lines, as I was incapacitated post surgery and debilitated with grief.

Many of the reply emails, however, ended with this exact wording.  It really left me wondering if people had read our email in its entirety. I couldn't understand why the onus was on us to make requests of people - I felt that I had just made a request regarding this statement and noone accommodated my request, so why would I make another request?  I was fairly certain that any requests I made would fall on deaf ears, once again.

In the days after Asia's death, I couldn't think of food, or showering, or taking Sophie out of the house or anything for that matter. To be perfectly honest, I think Freddie and I lay on the couch crying most of the first 3 days [before he had to go back to work] or distracting ourselves by watching crap TV.  We ate frozen pizza for the first few days round the clock, and if it wasn't for Sophie's food schedule, we probably would not have eaten at all.  I had really hoped that our closest and dearest friends/family would step up and take care of us in some manner.  A psychologist I see at the Pain Clinic told me that people are busy with their own lives and that sometimes it's like swimming against the current - you have to literally throw in a lifeline and make them come ashore to get them out of their current.  I understand the analogy, but honestly, I am the one who needed a lifeline - I was in no condition to be reaching out to anyone else.

How could it be FOUR years already??

It seems so very long ago, and yet it seems like yesterday.  I think of Sammy each and every day. In some twisted way, I find some comfort that Sammy is not alone up there in heaven and that he now has three new siblings to play with.  I know, I know, I've read books that talk about the perfection of heaven, that our loved ones don't feel pain or experience longing - but I still worry that he misses us as much as we miss him.  I know that in the perfection of heaven, having siblings with him shouldn't make a difference - but I hope it does.

We had reserved a mass for Sammy a few weeks ago, but we didn't tell anyone.  My mom noticed it on her own in the church bulletin, but I didn't remind her and she forgot to come.  Freddie also had a crazy day at work and had to be there at 8am - and mass was also at 8am.  So, for once I got to wake Sophie up and get her moving early.  Mass was nice and it was fitting that today was the Feast of the Assumption [celebrating Mary's ascension into Heaven] and I was glad to be there alone - there was a strange comfort in doing something for Sammy. We lit a candle for Sammy and Asia, as I didn't have any more coins.  It was heartbreaking to see Sophie lighting candles for siblings she'll never know.

Later that morning, we were going to Costco, and Sophie kept chattering about "Sammy, Asia, Tiny, Church".  I panicked for a moment as I haven't told my mom about Tiny or Teeny - she worries about me too much already.  So I told her we were at church that morning and she proceeded to tell me that back in the old country, they didn't reserve masses for unborn infants because they are angels and don't need the grace of a mass.  I couldn't help but answer with some anger that the Catholic Church has no official standing on what happens to the souls of unborn children.  Baptism does not apply, as it has to be a live birth, but little souls who don't take a breath are in the unknown.  When I spoke with my priest about this, while I was arranging Asia's funeral, all he said was that we don't know, but that Saint Pope John Paul II had said that our God would not be so heartless as to exclude these little souls from the gates of Heaven.  So I hope and pray that all my children are safe in the arms of God in Heaven, but I don't know...I wish I did.

I used to write letters to Sammy at his Angelversary and on his due date...but they all said the same thing - I miss you, I love you, I hope you are OK.  I don't know what more to write.  I don't know what more to share.  Those exact thoughts run through my head daily and I pray for his safety up there.  Maybe I'll come up with something tonight.  I've read that if you write a letter to your angel, you can try to write a letter back to yourself and that it may be influenced by your angel...but I never have an overwhelming feeling.  I've prayed for a dream of Sammy for 4 years, but still nothing.

Yesterday we went for a walk with our neighbour, you remember the one who was expecting a boy at the same time as we were?  Her little guy is 3.5 - the same age Sammy would have been. Sophie likes playing with him and it kills me to see them playing together, because Sammy should be here!!  Sophie and Sammy should be goofing around together!  She should have a partner in crime all the time!!

Tonight, we celebrated Sammy's Angelversary with cannolis and puff pastry.  We lit Birthday candles and had Sophie blow them out - at least a little bit of Sammy in her life.

Letter to the missing friend - things I wish I could say

When the world just won't stop.

It seems that in the movies, after the loss of a baby, there is this huge outpouring of love and support.  Long lost friends come back to offer their condolences, neighbours bring you casseroles, friends and family are there to take care of you, your house is filled with flowers and cards, and the family of the deceased can't seem to find a place to themselves - they hide in bedrooms or go for long walks to get away from everyone.  It seems like such a sense of community...but this is in the movies, after all, it certainly isn't real life!

In my life, it is sad to report that the world has not stopped for anyone close to me - in fact, I don't think it's even slowed down a little.  When we lost our firstborn, Sammy, the lack of empathy, love and support from everyone was, I thought, because we had not announced our pregnancy to anyone, following that silly rule of waiting till you are out of the first trimester [waiting for what, to grieve and cry alone??].  This time, we let ALL our friends and family know that Asia had two 'incompatible with life' diagnoses and that we were carrying her as long as we could.  We sent our first email out to 40+ people, asking for specific things during our pregnancy:  please spend time with us and our 2 year old daughter Sophie, ask about Asia and her condition, feel free to call us, we want to see you.  We had ONE invitation for a visit with friends during the 6 weeks that I carried her with the diagnoses and ONE family dinner [but that was because it was my husband's birthday].

During our time with Asia, we had very limited contact with anyone.  It was as follows:
     1.  At the family dinner for my husband's birthday, noone asked about Asia and instead we spent 55 minutes talking about my brother-in-laws canoe trip this summer.  I sat there through the entire dinner with tears in my eyes as I felt that noone cared what we were going through.  At one point, my other brother-in-law asked what I thought about the conflict in the Ukraine, and I just mumbled that we don't watch the news right now.  I wanted to scream that my days and nights are filled with reading books of how to love your child and prepare for their death, reading blogs and articles of what Trisomy 13 is and if there are any living children with that and Alobar Holoprosencephaly, so no, we don't watch the news right now.  Noone asked how we were coping, how things were going, did we have any news...nothing.
     2.  A few weeks later, our friends invited us to join them for dinner at their place and we agreed, not knowing that we'd lose Asia that week, that I'd suffer an emergency D&C due to retained placenta...but we went for dinner 4 days after her death to get out of the house and offer Sophie some 'normalcy' - its not normal to see mom and dad cry all day and night after all.
     3.  Ten days after Asia's death and one week after my surgery was Sophie's 2nd birthday.  We had sent out invites to our families a few weeks in advance and had planned on holding 2 parties, simply as we don't have the space to accommodate both our sides at once.  My family came on Saturday and Freddie's came on Sunday.  Not a single person emailed to ask if we are still having the party in light of Asia's death.  Only my mother-in-law offered to help with food - noone else offered [we made the food, decorated, I even made 2 birthday cakes from scratch].  Not a single person spoke her name or asked about her.  They never knew that just the day before, we had decorated her cremation box and said our last goodbye's to her at the funeral home.  They never knew how painful and difficult it was.

Don't get me wrong - we did get some flowers.  My mother-in-law brought over a potted plant, my mom brought us flowers, our friends sent over a potted plant and my cousins sent us a gorgeous arrangement.  I emailed my cousins to thank them for this token of remembrance [they did nothing for Sammy] and I explained that I would have called, but I was just released from the hospital that morning after having emergency surgery [didn't mention what it was].  I had expected them to call or email back...but nothing. Noone inquired how I was doing, if we needed anything, nothing.  We were blessed to have ONE set of friends who were lovely enough to invite Freddie and Sophie for dinner the night of my surgery, as Sophie is very attached to me and has never been away from me before - since my surgery was an emergency, I was admitted to the ER and then had to wait for a surgical suite to open up, so it took some time.  Once we were home, these wonderful friends made us enough dinners to last a week and brought a book and a stuffed Elmo for Sophie to help entertain her.  This was so lovely!!  They were the only ones who stepped up, other than my mom, who has been here daily.  I couldn't lift anything over 10lbs post surgery and my mom would go with me everywhere to put Sophie in her carseat or just to lift her onto the change table for me...I don't know what I'd do without her.

Other than this small gesture of kindness, we felt and feel totally alone.  Freddie says that I expect too much out of people...but even he has shared how hurt and disappointed he is with our friends and family.  Our friends have not called or emailed.  It was the 4 month anniversary of Asia's death a few weeks ago and by sheer coincidence, we were throwing my mother-in-law a surprise dinner - noone mentioned the anniversary or Asia, noone asked how we were doing. In fact, one of my brothers-in-law has still not even offered condolences.  I understand that people don't know what to say - but if you feel sad, think for a moment how we feel?  All our friends, the people who we spent time with, weddings, graduations, baptisms, vacations...gone.  Our families, who claim that they are so close-knit and loving - not there.  It's been almost 5 months since Asia died, the summer is nearing it's end and we have not been invited or spoken to our friends or families - and we live in the same town!!  It's so heartbreaking to know that our sadness and tragedy didn't even register on the radar screen of these people.  Why can't they love and care about Asia...or us for that matter?  The silence from all these people is not only disappointing and hurtful, but frankly deafening.

The world didn't just stop ...it didn't even slow down...

I am a mother of 5

Hello Dear Friends,
It's been some time since I've been here - I guess I just needed a break to digest and just try to deal with everything.  I've been trying to journal in my private notebook at home, as so much has happened.  I will summarize the last 4 months as best as I can.

Thank you so much for all your prayers and kind emails.  Following the CVS testing, we learned that the baby we named Asia not only had Alobar Holoprosencephaly [her brain was not forming properly], but she also had Trisomy 13, a genetic defect that in most cases is incompatible with life.  Sadly, our little girl, Asia, earned her wings on Wed. March 19th.  I had just started my fifth month of pregnancy and was feeling good.  I had had a bit of spotting and was worried that her birth may be imminent, but I had an ultrasound and an OB appointment that Thursday and I was hoping to see our little girl.  Unfortunately, it just wasn't meant to be.  Freddie had left for work and I was resting on the couch after breakfast - Sophie had just told me that she needed a diaper change and so I got up to put my coffee cup on the kitchen counter, when there was a huge gush of water that soaked my bathrobe and nightgown. I knew my water had broken and that I had just delivered Asia.  I made it to the bathroom only to discover that indeed, our sweet little girl was here, attached by a very short umbilical cord.  I kept trying to call Freddie, but he wasn't answering - finally I called my mom who lives down the street and I begged her to rush over. The few minutes it took her to drive over seemed so long.  Finally, she was there and I asked her to cut the umbilical cord and get me something to put Asia on.  She was so tiny - she fit into my hand.  She was very fragile, her skin was almost translucent.  She had long fingers and toes, and a long torso like Sophie.  I cried and cried and cried.  I didn't want things to end this way - I had planned a lovely birth in a hospital, where Sophie could meet her little sister, surrounded by family...but here I was, alone and honestly scared to let Sophie see her sister - she was coming upon 2 and I was worried that she would be scared. Finally, I got through to Freddie and he rushed home.  To make a long story short, we had time at home to spend with Asia, then my OB insisted that I rush to the hospital and was admitted to the Perinatal Palliative Care room, where they treat terminal births.  Our nurses were amazing and took such good care of us. My mom stayed with Sophie all day, until we returned home at night.

Thing were made worse when 2 days later it turned out that despite taking meds, there was still a retained piece of placenta and I was rushed in for a emergency surgery.  Freddie had to go home to take care of Sophie, my mom was ill and I was in the ER alone, grieving and scared out of my mind.  I had never had surgery and I was so scared of what might happen.  Luckily, the surgery went well and I was released that same night at my request - I was home in bed with Sophie by 3am.  Sophie had never been alone from me that long, and even when I called Freddie at midnight to tell him I was being discharged, I could barely hear him over her crying.

We held a small, private funeral. We didn't invite or even tell anyone except my mom.  It was small, private and intimate. Only the people who had met Asia and loved her were there.  I had made a flower arrangement for her - but it just didn't seem to suit her.  We had had Asia cremated the week prior - I insisted on outfitting her cremation box with an Angel Blanket I had knitted in a calm pink, photos of all of us including Sammy's ultrasound and Sophie's announcement that she would be a big sister, a small bunny to keep her company [I bought two and kept the other one at home].  We decorated her cremations box with stickers and flowers. The entire experience at the funeral home was horrid, with insensitive people, stupid rules and ignorance, not at all what I had expected, but that is another blog post...

Sadly, we received no support from friends or family...again.

In the months since, I have healed physically - the first 3 weeks I couldn't lift anything, so my mom went with me everywhere as I couldn't put Sophie in her car seat or lift her up on the change table.  Both Freddie and I turned 40 - further genetic testing revealed that neither one of us is a carrier for Trisomy 13 and we were cleared to try again.  Although I don't feel emotionally ready to continue our TTC journey, we have forged ahead as we don't have the luxury of time.  We had also consulted with our local government adoption agency and learned all about the adoption process - but in the end, we have decided that adoption is not for us at the moment [again, another blog post].  

We had our first TTC cycle in June and I just knew that I was pregnant.  Indeed I was, only to miscarry a few days later.  I was devastated that "Tiny" had left us so soon.  July came and another faint positive showed up, only to end in another loss of "Teeny" this past weekend.  I'm tired, I'm defeated, I'm sad and I'm angry - how much pain does one family deserve?  Should we just stop trying?  I feel like I'm 'cheating' on these babies by trying again...and not grieving them properly by continuing TTC.  I don't understand the point of all this, the lesson that I'm supposed to learn, that kernel that should make me a better person...I keep waiting to understand.

It completely boggles my mind that we have one living child...but I am a mother of five.

How can I ask the Lord this???

Hello Dear friends,
It's worse than we thought, way worse, if that is even possible.

Our baby has been diagnosed with Alobar holoprosencephaly, a condition where basically the brain does not divide into two hemispheres, but rather is in one u-shaped chunk. We are undergoing further testing tomorrow to test whether there is also an underlying genetic condition like Trisomy 13 or 18, which they are suspecting. Basically, it looks like our child may not be able to breathe on its own, or have a pituitary gland which is required to control hormones which control various functions like kidneys, for example. In most cases, this condition is fatal. We are beyond devastated and have cried a million tears. It is likely that this is a genetic condition, so we are probably done having kids as well. It breaks my heart to know that Sophie will probably be an only child.  Our lives are in complete turmoil right now - our worst fears have come true.

We should know at our 15 week u/s the degree of severity of this condition, but they are suspecting the most extreme. The mildest forms can manifest themselves in developmental delays, similar to Down's Syndrome, while the most extreme can cause facial anomalies, like the absence of a nose, one eye instead of two...and death.  We do know that our baby has two eye sockets and a tiny nose, but the face is 'smooshed' and affected.  They believe that we are leaning towards the most severe end of the spectrum.  In milder cases, the child might be expected to survive, despite severe mental and physical challenges - but they are preparing us for miscarriage, still birth or death after delivery.  This happens to 1 in 4000 babies, so about once a year at their hospital and I guess we're just the lucky ones. Sadly, it breaks my heart that as a parent all I can pray for is a peaceful death for this baby - please continue praying for us, we need all the strength we can muster.

We are undergoing transvaginal CVS testing tomorrow [they take a part of the placenta for genetic testing] and we should have preliminary results by Thursday indicating if our child also suffers from Trisomy 13 or 18, or Down's Syndrome in conjunction with the above. I just can't believe that this is happening to us...in a way, again.  No parent should have to think about their child's funeral before they are even born...