Time for a list: 10 months, 10 things.

Dear Zach:

Today you would've been 10 months old. In your honor, I will let the pain aside (at least for today) and I will  just remember the good and the blessings that came with meeting you. We will go to a memorial service today at 3:00; a special service for those little ones that just like you, left us too soon and are now having a blast with our heavenly father. Whole and healthy. This random head of mine would like to write something grandiose, something as magnificent as you, but the ache in my chest and soul is a huge block that prevents it from happening. Constantly.

I will make things simple and I will stick to a list. 10 months, which gives me 10 good things that came from your short visit with us:

1. You showed us what selfless Christ like love is truly like. Given the choice, your dad and I would've gladly switched places with you, if that had made you whole and healthy in this earth. Just like Jesus who died for us, we would have done the same for you. Not because we are "good people", but because I know that this is a feeling that any mother and father shares for their sons and daughters. Now, with a heavy heart, I understand.

2. You made us a family. David and I stopped our self-centered worlds to realize that there's more in life than living just for ourselves, even though part of our family is in heaven now, we're still "The Harmonson Family".

3. Thanks to you, we learned what grace truly means. Being on the receiving end humbled our spirits. We were showered with love and grace everywhere including our family, our church, and the people in our community just willing to help us every step of the way.

4. You brought truly amazing people to our lives that we wouldn't have met otherwise. We gained a whole new level of respect for doctors, nurses and therapists; specially the ones involved in your care, since they showed a level of love and compassion that only God can give. You continue to bring great people to us online, in our new support group, and to this day, I get new friends, almost on daily basis.

5. You opened our eyes to the many needs and pain that is still out there, because unlike our real home, this is a broken place. You inspire me to not give up on my faith, to keep praying and following other kids and families that are still in the trenches. I'm still praying to find a way to help and reach out in a more meaningful way. I'm not trying to make excuses (or maybe I'm), but I haven't done a whole lot more because I'm also trying to get back on my feet again.

6. You left us a beautiful garden that was given to us by our neighbors and their family. My San Antonio family, truly compassionate people that grew closer to us thanks to you. Today in your honor, the roses are specially blooming today, just as you would have. This garden knows that today is a milestone worth celebrating.

7. You showed us in an "In your face" fashion that God doesn't make mistakes. No matter what, there is meaning and purpose for every life since conception. Every human has been fearfully and wonderfully made and shares the signature of the same creator. (DNA?)

8. You gave us a whole new level of appreciation for eyes that blink, wrists that bend, hands that move, legs that kick, facial expression. Every one of our breaths have been counted and we still need to make the most of them. Ahem. All I can do now is give thanks for the breaths and blinks that I have left, and I'm still trying to make the most of them, even though I feel sometimes that I'm failing miserably in that arena.

9. You made me a blogger and created a whole new monster here. I spend a lot of time reading and following other blogs and stories that I wouldn't have connected with otherwise. If this blog is able to help at least one person, or if it helps keep your memory alive, it will all be worth it.

10. You made me a MOM. You made me experience what is like to be pregnant, having life growing inside of you. People that doesn't know me may not know it, but I'm a MOM! I have the stretch marks, the c-section scar and the hole in my heart to prove it. You changed me inside and out my beautiful angel, and there aren't enough words that I can put out there to explain just how much I miss you and love you, how much you still mean to me, how YOU, my little miracle changed our lives and faith in ways that we're still trying to comprehend. We will see each other again boy. Please be patient and keep cheering for us while you're in heaven. (We promise not to embarrass you too much).

Happy 10 months my sweet angel, my "pulga", my fearfully and wonderfully made,
"Zachary Owen."

The three of us cuddling in OUR BED!
Sorry for the low quality pic.
 I don't have a lot of pics
with all of us at home,
which of course,
makes me feel like smacking
myself in the head sometimes...

Time to Light Candles and Release Balloons

"Because angels do come to visit us.

Every now and then,

and we have to make them feel welcome,

because they come to touch many lives.

Even if it's for a short period of time;

angels are here to be cherished

and be cared for,

and once you meet an angel, 

your life is never the same."

Yesterday, October 15th was "Pregnancy and Baby Loss" awareness day. I was really glad to receive a call last Friday afternoon from the Hospital that was in charge of Zach's home care to let me know about the event. I wish I had know earlier about this, I would have made t-shirts with the cute peanut's face on them... but oh well, I guess that will happen next year.

All over the world, on October 15th, candles are lit at 7:00 pm to remember all of our angels. The ones lost trough miscarriage, still birth, SIDS, or infants gone home too soon due complex medical conditions. I had to fight the urge to hug about every one in the park, we all had the same tears, the same heart ache, the same hope to see our boys and girls one day in heaven with our heavenly father, whole and healthy.

Next year, I want to make a big to do about it; hopefully with more time in advance we will be able to go all out. We are still new to this whole thing, so we weren't exactly sure how to act or what to do, we just showed up and David was assertive enough to get the biggest blue balloon available in the market. I know that our boy liked it.

 I spoke with some families that just like us, have walked the less traveled road, and it put things in perspective to realize that our Zachary, being two months and two days old, was actually one of the "elderly ones". Many of this children were with us for minutes, hours, a few days or weeks maybe... and it made me appreciate much more the time that I actually had with my boy. It also left me in awe the fact that this lives that lasted minutes or hours or even in the painful time frame of a stillborn,  this little ones were able to have a huge impact in other's lives. This precious lives happened and mattered. They mattered.

Find more information, resources and a beautiful online shop at www.ocotber15th.com

We heard that this year had twice
 as many people as last year!

Mommy Misses you every second,
every minute of every moment of every day. 

David got you the biggest possible
 blue balloon, hope you liked it. 

We look forward to see you again.

In the meantime, we hope to make you proud.
 (Or at least, no to embarrass you too much )

Time to Catch up

Lot's of happening around here lately, hence the reason why the blog has been kind of neglected. I'm kind of scared to see when my last post was, but let's see... I left off with a wooden desk from craigslist that needed a face lift, and now I'm writing on that very same desk. The office is pretty much finished, and now we need to finish our bathroom and bedroom, which are still without doors.

I also need to catch up with my energy levels, since the major remodeling. I've been feeling kind of weak and weary. It was nice to be extra busy and have a "break" to keep the mind and the body occupied, but I feel pretty worn out. David also had his back surgery in the middle of the whole make over. Thank God he's not in this excruciating pain anymore, and now it's just a matter of recovery. A slow but steady recovery and hopefully in about 5 more weeks I will have my hubby back 100%.

Steady and slowly we are getting a new sense of normalcy back. Sometimes after a long day at work we even eat and watch movies at night, just like everyone else. We work and try to connect with each other, and even pretend to function like the rest of the world does. It is HARD. It's easy to believe that we're getting over this rough times, that things will turn around and we might as well win the lottery or something along those lines because we are just like this amazing people who deserves it... but we're not fooling anyone. Yes, I still want to believe that good things are yet to come, but my definition of "good things" has been largely readjusted.  We both have new scars inside and out. We changed. Forever. There's no going back to the life we had B.Z (Before Zach), and there's no "getting over it", because this is not something that we need to get over it. We need to learn to live with that, to embrace it and grow from it, and hopefully use it as a ministry to reach others. We took the red pill and saw how deep the rabbit hole goes, we had this "Matrix Moment" ,  saw "reality" and there's no going back after that.

I will embrace grief, take time to heal, and I will keep biting a whole new elephant. One pill at a time. One bite at a time.

When Silence Strikes

I'm off work today and other than Hunter barking in the backyard, the house is pretty quiet. It's always times like this when I'm most likely to have my meltdowns.Grief takes over and I'm just left with a bunch of "what if's"? rambling around in this crazy head. 

This house is still a wreck since we had a major leak about a week ago, and we're still waiting to get the floors installed again. All I can say is that if this leak had happened about a year and a half ago, probably I would have been bananas by now, and would be rushing everything to get it done PRONTO. I still have my episodes like that though; but they too shall pass since I'm proud to say, I have shifted my priorities. First and foremost: BLOG, then leave the pile of laundry for later or whenever I feel like it; skip the trip to the grocery store, and figure out what kind of meal can get put together with some old onion, ketchup and maple syrup. Come on, there has to be something, at least on Pinterest.

It is in the midst of silence when I still catch myself dreaming about what I'm going to do when I become a mom, is that fraction of a second when I'm half-asleep and half-awake when I have to stop myself  I retell myself the whole story: Wait a minute. You've been a mom. It's done. Then a glimpse at my stretch marks and the c-section scar confirms it. Zach happened and it's over now, the factory is closed and there will be no more pregnancies. Then I get coffee and get on with the day. 

This is now like the aftermath after a big war, and then there's silence. People has moved on, because as hard as it can be for me to digest, the world is not Zach-centered and people has lives. Thing is, I haven't really moved on. Probably I never will. I may go on and about making up new hopes, new dreams, new somethings, but you don't really move on. I catch myself bending my wrists and my index finger as Zach would. I still try to type, serve coffee or fold the laundry with my wrists bent and sometimes I walk with my feet clubbed (when nobody is watching) , kind of in Zach's position to see if he could've done that. Dubiously sane, I know but I just don't seem to be able to let go, and part of me doesn't want to.

              "Silence, what I always hear, after crying, lots of Silence" 

What's Up With the Entitlement?

When we found out that we were pregnant, just as any other couple would be, we were ecstatic. The joy just could't fit in our chests. Do you want a boy or a girl? people would ask, and I blissfully unaware of what was heading our way, would respond with the pregnancy mantra that I so much came to hate: We don't care, as long as he's healthy...

Then the news came, and dreams were shattered. Why even in the realm of disability, he would be one of the worst case scenarios. "You have to pray" would say some, "You have to think positive" would say others. Now, in retrospective, I don't believe that this happened because we didn't pray hard enough, or because we weren't "positive" enough.It's not even something that God allowed to happen. It's just now that I can pin point exactly what had set us up for added grief, and it just made it harder (at least for me) to bond with my child. One word: Entitlement.

As long as he's healthy... Well, Zach wasn't, So what?  We didn't love him any less because of that. You are a very strong woman, I don't know what I would've done if I was you. Translation: I'm so glad that I'm not in your shoes. You can't be so out of luck that it's the worst case scenario...Well, we were worst case scenario. So what? there's still that one word flying around and rubbing it in: Entitlement.

What really set us up for added grief is the false belief that we deserve the best because we are "good people". Full disclosure, I believe that I was willing to accept nothing less than an all and all perfect child with some super powers added, because I deserved nothing less; because I took my vitamins and all the prenatal testings were "normal", we've done everything by the book and I loved children. (Mind you: Perfect children that never trow tantrums and never get dirty and always eat their veggies.) The same goes when it comes to jobs, marriages, material stuff. We grow to believe that we deserve nothing but the best. I grew up in house filled with love, with all the "stuff" that me and my sisters needed and then some. Why would things be any different now? Even though I started a relationship with Christ, I became spoiled, "I praise you Jesus as long as you keep pouring down the goodies"  Until he didn't. Until our faith was shaken, until we were left with our faces on the ground praying: Make our boy swallow or breath or what have you.

Even though it's not like: Before Zach I was a horrible person and now I'm a saint. He taught me to just STOP. COMPETING. STOP.COMPARING. He was in his own timeline, so was the preemie next to him, so was I , so was David, so were the doctors and nurses. God didn't promise a life without problems. What he promised was to be with us all the way, because light and dark are alike to him. Before Zach, I never had a really big problem. Actually, I never had  a problem at all. It was all about getting as much stuff out of this world as I could get. Until it wasn't. Until life served me a big slice of humble pie that was bitter sweet to swallow.

During Zach's stay in the NICU, I also had big financial concerns about how in the world we were going to make it? but at that time, life showed me that even if I had all the money in the world, even if I had a million dollars (which I don't), this wasn't about money. None of that would've matter, it wouldn't have been enough to grant us our biggest heart desire: Seeing our boy blink.

This was about giving thanks for what we actually had. Yes, he couldn't blink, but he had a lovely face. He also had two arms, two legs, ten fingers, ten toes and he was aware of the love around him. Yes, David and I were under slept and on edge, but we were together. Yes, nobody in the world can even imagine what we went trough, but there was people around us willing to bring us lunch to the Nicu, willing to pray for us, and just to be there supporting us in any way that they could. Yes,  I don't have exactly my dream job, but they went above and beyond to accommodate me and they were extremely understanding during this tough times, my job also allowed us to cover most of  Zach's expenses and we got him the best doctors in South Texas.

I'm still learning to shift from being entitled to be grateful. To just take life as it comes, and just to appreciate what I actually have, and that sometimes include lovingly embrace what I don't have, and be grateful, since Zach is healed indeed.

About 20 weeks pregnant,
ready to teach Zach some  multiplication facts "in-utero"

Zach contempt and having a blast in the NICU
with his mobile, teaching me some life-facts.

The praise of Folly

Praising and accepting the madness that comes with a husband with a back that is not getting any better, more trips to the doctor, and a huge leak in our master bathroom that went on to our bedroom and ruined the whole wood floor.

Lots of changes in my to do list, just to give an idea this is how my to do list has changed just in a couple of weeks:

1. Last week: Get a fence for Zach's garden.

 This week: Zach's black fence ended up looking more like some creepy Halloween decoration. Totally a no-go. Get that fence out pronto, return it and just leave the whole fencing issue on the side for now. 

2. Last week: Finish the so called office Makeover. 

This week: What initially started as just a quick office makeover is now a whole house makeover. Since I'm at this madness already, I might as well go all out and paint our bedroom, change the doors and the bathroom sink, paint the bathroom, rearrange our closet space and God knows when I will call it a day.

3. Last week:Put an end to the clutter on David's desk. 

This week: Clutter in a desk? Really? Was that my biggest problem?  How about accept and live with the fact that since we are now sleeping in the office, every room in this house is now a wreck.Officially. 

4. Last week: Accessorize office to give it a "man's cave meets modern style look". 

This week: You've got to be kidding me! Let's focus on a new design concept: "make this house appropriate and safe for human living."

5. Last week: Dye my hair (Not by choice, if this goes on untouched I will end up looking like Pepe Le Pew). 

This week: Pull off the Pepe le Pew look somehow, maybe with some personality. If that fails, wear a headband or cover that stubborn white hair with mascara as a last resource. Girl you have other stuff to do.   

I'm getting used to this thing of planning one thing, to end up doing something totally different. That pretty much sums up my life sometimes. I still insist in trying to have some control; when indeed I just don't seem to have any. Things Happen. Shit Happens. Whether if I have my list or not, whether if I had planned for this or not.

On the bright side, I like to stay busy and have things to keep my mind occupied and out of grieving mode for a while. We also bought a lucky craigslist find, a beautiful wood desk that I plan to repaint, and give it a face lift and since my house is already a mess, I should just keep adding to the mess and join and enjoy the party, and get... Busy.

Genetics 103: Questions & Answers (Hopefully)

I'm well aware of the fact that my cell looks more like an over-easy egg, but I hope this helps to clarify  the following (and last set of) questions:

1. Are neuromuscular problems genetic in origin?

Not all neuromuscular disorders are genetic, but there are many that are. Some examples of genetic neuromuscular disorders include spinal muscular atrophy and the different types of Charcot-Marie-Tooth disorder. These conditions can be a challenge to diagnose, but it is important to determine when a neuromuscular patient may have a genetic cause, as then it can impact other family members.

Answer by: Angela Filose: I work as a full-time genetic counselor for a Kaiser hospital, working with prenatal, pediatric, and hereditary cancer patients.

2. What is mitocondrial DNA, where did it come from and why is it needed? 

In humans, mitochondrial DNA spans about 16,500 DNA base pairs, representing a small fraction of the total DNA in cells. Mitochondrial DNA contains 37 genes, all of which are essential for normal mitochondrial function. It is inherited solely from your mother. Many genetic conditions are related to changes in particular mitochondrial genes.

Answer by: Anna Rossoshek, M.S., M.B.A.: I work in the Chemical Genomics Branch at NCTT/DPI. My work encompasses a broad scope of functions that allows me to utilize my education, both scientific and business management, in addition to the experience I have gained through many years as a Biologist in an NIH Intramural Lab and as a Scientific Administrative Analyst in the Division of Extramural Research at NHGRI. I currently assume the role of a Project Manager for the four main scientific sections of the branch. Those sections include Tox21, RNAi Screening, Chemistry Technology Development, and Assay Development and Screening Technology.

  

3. Can a genetic test such as whole exome sequencing detect mitocondrial disorders?

Good question! Mitochondrial diseases can be caused by mutations in either the mitochondrial genome (a small circular chromosome found within the mitochondria) or by mutations in the nuclear genome (on the chromosomes found in the nucleus). Whole exome sequencing is typically done in such a way that only the exons in the nuclear genome are captured and sequenced, and thus, will only identify some of the mutations associated with mitochondrial disease. Some labs will also do a separate analysis of the mitochondrial genome to identify those mutations.

Answer by:  Hooker, Ph.D., Sc.M.:I am the Associate Director of the Johns Hopkins Bloomberg School of Public Health/National Human Genome Research Institute Genetic Counseling Training Program and a contracted staff scientist within the Social and Behavioral Research Branch of the NHGRI. Prior to entering the field of genetic counseling, I completed my Ph.D. in Molecular, Cellular and Developmental Biology.

4. Do you see the whole exome sequencing test being available to the general public and covered by insurance companies any time soon?

Great question. I don't see this happening in the very near future, but I do see the possibility for public access to whole exome sequencing becoming a reality in the next 20-30 years. It may still be too expensive for many at that point, but also available to many. 

Your question about whether insurance companies would actually pay for this testing is complicated. I think we would have to prove that whole exome testing would be useful to our medical providers. That is something I think will take much longer than 20 years. Genetics is complicated by the fact that our technilogical advances, our ability to see information, is improving much faster than our ability to understand that information. 

That takes much more work since we are talking about how our genetics affect our body's functioning, and our bodies are very complex. We also have to take into account how our bodies are affected by the environment we live in. Lastly, we need to understand the social and ethical implications of being able to get this information. Is it something, as a society, that we want the general public to have access to? There are many of these discussions going on and many more that need to happen as we develop these technological abilities. 

Answer by: Ami Rosen: For the past 10 years I've provided genetic counseling to people at risk for developing Huntington's Disease. I am also a neurogenetics research coordinator, well-versed in the ethical concerns of human subjects research and DNA banking. 

5. Do you see things such as "genetic discrimination" happening in the near future?

They are definitely possible, so that's why it's important that we take measure now to prevent them through legislation, promoting awareness, and developing guidelines for the professionals involved. Right now, individuals are protected by GINA (Genetic Information Non-discrimination Act), where health insurance companies cannot discriminate someone based on his/her genetic testing results. In the future, we may also move towards establishing legislative protection from genetic discrimination from other sources, like disability insurance, life insurance, etc. 

Answer by: Julia Su: I am a second year genetic counseling student from Sarah Lawrence College (graduate May 2012). I have rotated through several genetics clinics in the New York area and Toronto. I am highly passionate about genetics, as well as the integration of psychosocial counseling in clinical genetics services.

6. Is the structure of the DNA molecule something that was originated randomly? or was it designed? 

The structure of DNA (the double-helix) is the way it is out of necessity. This structure, which resembles a twisted ladder, makes it possible for each DNA strand to be precisely copied. These copies, which contain the same genetic information as the original DNA strand, can then be passed along to an organism's offspring. I'm not sure when DNA first evolved into its double-helix structure. Sounds like a chicken-and-egg problem!

Answer by: Becky Clark: I am a genetic counselor and research associate in an ophthalmic genetics department. I counsel patients on inherited retinal disorders and manage a repository and database for genetic testing research. 

I wasn't too happy with the last response, but in all fairness, that is a whole other debate worthy of it's own chat session. I really believe that I answered my own question better in this post: Fearfully and Wonderfully made.

With that said, I'm very grateful for the opportunity to chat with the experts in the subject because it did help me get some more understanding over the things that happened to us, it had a great therapeutic value for me, I hope that it has the same value for you, if you stumbled upon this post.