It's here!

Ethan's headstone came in yesterday. Seeing his name and picture reaffirmed that it is indeed my son's body down there. I try very hard to forget the morbidity behind this fact and sometimes I forget that the biological part of my son is in the ground.

Call me anal, but I'm only 99.9% happy with his headstone. I was not pleased with the way they cropped his "signature picture". The photo people cropped out the entire background and all you can see is his face. I'm a stickler for perfection and I plan on replacing his photo in the near future. I don't care if I have to drop more money on his headstone. Aside from flowers, I will never have the opportunity to buy my son anything ever again. I want to make sure his headstone feels right.

Aside from my personal beef with the cropping, the placement of his headstone was oddly comforting. It brings me one step closer to closure. I only have two more things to do before the "grieving chapter" of my life can be closed. I need to muster up enough emotional energy to start writing thank you notes and I have to finish his scrapbook. Once I complete those tasks, I will be completely done mourning

…sort of.

I know that I losing my son will always be sad, but I gave myself a deadline to stop holding onto my sorrow. Lagging on doing "Ethan stuff" only prolongs the pain.

Robert Frost...

A poem by Robert Frost...

Nothing Gold Can Stay

Nature's first green is gold,
Her hardest hue to hold.
Her early leafs a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.

This poem has been imbedded in my memory for 13 years. Out of all the poems I have ever read, this has been the only one. (Thank you S.E. Hinton.) I never knew why it remained stuck until yesterday.

I've come to the conclusion that my son was gold.

Faith...

Ethan was my gift. Despite the fact that my son was called to heaven before me, I do not perceive God as an "indian giver". Cynicism has no place in the heart of a person who truly has faith.

As I helplessly watched my son's condition deteriorate, I refused to be angry with God. Though, there were times when I felt like I was staring the devil directly in the face. As we approached Ethan's final day, I could feel the devil testing my faith in God's plan. Yet, I stood firm. Losing Ethan brought me closer to God even though I would have expected the complete opposite. Having my baby in heaven has made me a better person.

I maintained my strength when an elderly gentleman in the hospital laboratory looked me dead in the eye and told me "it didn't matter" that my son was dying. My encounter with that pitiful man in the lab was the first time I became aware of the devil's presence. Although the natural evil inside of me (inside all of us) commanded me pummel him with my fists, I resisted the temptation. I wasn't even angry. I felt sorry for him and openly forgave that man for being so heartless to a mother who was losing her child. The devil walked away. May God bless that horrible man on his judgment day.

I desperately clung onto my faith even though a demon on my shoulder silently urged me to spite God for taking my son back. Ethan was my gift and he was sent down to me with for a reason. There was a purpose to his life. Not once did I look up to the sky and despise God's will for my baby's life. God's plan hurt, but I embraced it. Oh Lord did it hurt to embrace, but.... losing my son will always hurt.

When the day came, my knees didn't buckle when Ethan's spirit left his body. I did not beg for a miracle. I let go and I kept my faith in God. After my sweet Ethan was gone I found myself broken, but repairable. Tears still flow from my eyes, but each tear that I shed helps me see light at the end of this dark tunnel.

I like to think that I've learned a profound lesson about life after my encounter with death. With death, I learned the capacity of my own inner strength. I also learned the extent of my faith in God. By no means am I a straight-laced Catholic. I never was and I never will be. No one is perfect, but I know that maintaining trust in God is what we need to live life successfully. If we allow ourselves to incorporate Him in our lives, the hurdles life throws us will be easier to jump over.

I didn't learn this important lesson until I met and ultimately lost Ethan. Before I was blessed with my gift, I metaphorically placed God on the back burner. God was in my heart, but I did not allow Him into my life. "Life" took over and I found excuses for why I couldn't go to church. I was "too busy" to be with God, but I expected Him to be with me at all times. Even though I knew God was with me always, I didn't honor Him. I should have focused on maintaining my relationship with God. Despite my ignorance, He still stood by me and kept me strong. Wow. God is good and He continues to carry me through my anguish.

I am sharing this with you not because I feel like I am "holier than thou". I chose to share this because I believe Ethan's legacy was to remind me (and to remind those who are near and dear to my heart) that we shouldn't forget about God. I know that Ethan didn't die in vain and because of this I'll continue to adhere to my 2nd chance with God. Ethan was given to me and taken back for a reason. I thank the Lord everyday for my gift, my son.

There is something to be learned from Ethan. Maintain your relationship with God and the rest should come easy. Continue to thank God for whatever gifts He has bestowed upon you. Appreciate everything that He has given you and that includes the struggles you may face. Life is precious.

Cherish every minute of it.

Fun...

For nearly two years I did nothing but spend my days at work, nights at school, and "free time" at home with the kids. Most of you know that the phrase "I'm going out" rarely escaped my mouth thanks to my seven day work week.

After Ethan passed, people convinced me that I should "go out and try to have fun" because I "needed" it. They felt that I deserved to have fun not only because I've struggled for so long, but also because I lost my son. To some degree I agreed and thus I reluctantly obliged.

In the past few weeks I've made some attempts to have conventional fun. I haven't declined invitations for "party time". Although I find myself increasingly capable of slowly moving on, I've still experienced waves of guilt and self doubt.

This Sunday will be two month mark of Ethan's passing. I've gone out to "let loose" three times since Ethan's death. All three times I've thought of Ethan inbetween drinks and giggles. The same two questions continue hit me at the most inappropriate times.

Should I really be going out and having fun? Isn't this a little too soon?

It always happens when I'm in mid-drink and I'm convinced that the echo from within the glass is responsible for bouncing thoughts back to me. Guilt-ridden thoughts come flooding back as I stare at smiling faces through my glass. Like I said, I've gotten very good at putting up a facade. Unfortunately, alcohol can't impair me enough to stop thinking about my baby.

No matter how much I try to drown out my sorrows and "stop thinking", I can't. I don't want to end up being a "weepy drunk" so I limit my intake of "fun". GUI (grieving under the influence) can be a dangerous game. I have to resist the temptation to get fully intoxicated. God forbid I have an "emotional accident" and spoil the fun.

Then again if I allowed myself to "get wasted", at least then I can stop thinking. It's a catch 22 really. Although I'll admit that I do indeed have fun when I'm out, I'm sad at the same time. I should win an Oscar for Best Performance.

Will fun ever be the same again?

Mouring...

After Ethan passed away, the hospital directed me to several "Infant Loss" support groups online. I tried to be open-minded and searched for another mother who fit my "demographic". I had no success because I suppose not too many young Moms lose their babies. I quickly abandoned that potential outlet and tried to make sense of my feelings by my damn self.

Although I share this grief with John, the pain I feel inside is something only a mother can feel. Other young Moms have sympathized with me, but no one could really empathize with my situation. There's a huge difference and frankly, my isolation pisses me off. Even though I have all of this support, I still feel alone.

I've gotten very good at putting up an "I'm okay" façade. On the outside I appear to be doing well...same old Tiff. I still initiate risqué conversation for chuckles and my spirits seem to be "back to normal". Oh, but I am far from it.

My friends...this is simply my coping mechanism!

I miss my son and still deeply bleed from losing him. My heart feels ripped apart and I don't have very many options to grieve. I don't share my feelings on such a public space for pity. I share because blogging has been the only thing that HAS helped. I revert to things that are familiar (blogging, pretending to be the same) because I have no other choice. This shit hurts, but I have to lie to myself and pretend like it doesn't. If I knew any other way to make it stop hurting, I'd do it.

For now, this will have to suffice.

Light...

Many people ask...

If God loves us, then why do we suffer?

We should be safe. We shouldn't feel preyed upon. We shouldn't be subjected to scary medical conditions. We shouldn't die!

But...we do. And that is life.

I heard an interesting quote on Catholic radio the other day...

"The light of Christ shines even brighter during times of darkness."
And...ain't that the truth? Believe it or not, God is present when devastating things happen to us. In fact, He is even more present when we suffer. He did not leave us or forget about our existence. The suffering did not occur because God neglected us. God continues to watch over us through our suffering.

I believe in this because I have lived it.

I have been in this darkness. Among other hardships, I have lost a child. And I am raising a child who lives with a potentially fatal condition. Life isn't easy and my heart has been hurt. Numerous times. Words cannot even come close to describing what I feel on a daily basis. And quite frankly, I have been traumatized by the hardships that I have faced. It is impossible to conquer pain. Scars are here to stay. Wounds heal and pain subsides, but the healing does not take away the fact that the trauma occurred. But, what gets me through the day is this...

I know that God does not punish. God loves.

It is God's love that brings forth comfort during times of darkness. Our Father lights our paths with his love.  God's guidance  teaches us to derive invaluable wisdom from any despair we may face. He will show us the way if we let Him. Let Christ be your guiding light through whatever darkness you may face. You will feel God shining upon you if you open your path to Him.

 Do not allow the darkness to make you lose your way.

I miss him...

I miss my son. Whenever the weather is gorgeous like this, I look forward to visiting Ethan at the cemetery even more. I visit him every day, rain or shine, but the moment is even more special when I'm not shivering. I love sitting on a blanket and simply talking to my son.

The cemetery is a beautiful place this time of year. There are flowers everywhere. Spring also brings the ground to life and I've been watching daisies slowly carpet his plot. The grass is starting to heal alongside with my heart. Although, I must say the grass is making much better progress mending itself together.

My heart on the other hand, is a different story.

On days like this, I miss Ethan the most. Beautiful, get-out-of-the-house days are rare. I planned on taking a trip to the park when Ethan got a little older. Taking pictures is my "thing" and I couldn't wait to take a million shots of my three boys playing at the park.

I would have made PB&J sandwiches and brought a blanket to spread out on the grass. I envisioned Ethan squinting his newborn eyes at me as I shielded him from the sun. I imagined that I would tickle his toes with a blade of grass just like I did when the boys were small. He probably would have cooed with delight just like Kevin and Anthony did. I can still visualize this moment, but this moment will never happen.

I never thought his first experience with grass would be at the cemetery.

God, this hurts.

25%...

Once insomnia hits me, there is nothing I can do about it. Unfortunately, I have to wait it out because quite honestly, sleeping pills scare me. I'm exhausted, but my mind is congested with too many thoughts. I'm blogging in hopes that my mind will be cleared of all of this traffic so I can finally sleep. I can't stop thinking a lot of things, but lately "25%" has consumed my mind.

I want another child. There...I've said it. I want another baby.

By no means am I trying to replace Ethan because my son is simply irreplaceable. I can't find the words to explain why I want another child, but I know something inside of me is telling me that Ethan was not meant to be my youngest.

Upon learning of "Another's" impending arrival, I began mentally preparing myself to raise more than two children. For months I prepared the boys for the arrival of their little brother. For months I worried, fantasized, and eagerly anticipated what it would be like to be outnumbered by three kids. I still have three children and the boys still have a little brother, but we just can't be with him right now. Once Ethan was gone and we learned that his deficiency was definitely genetic, I debated heavily about whether or not I wanted to have more children.

Ultimately I decided 25% chance or not, I am putting my faith in God that this won't happen to us again. There is a 75% chance that we'll have a child that isn't Factor VII Deficient so why should I obsess about 25%? That would be pessimistic. If I decided that I was too afraid that I'd lose another child, then I'd be a hypocrite for saying that I trust God.

Who am I to anticipate what God has planned for me? Who am I to say that Ethan was meant to be my last born? Who am I to say that losing my son was truly suffering?

Yes...it hurt to lose Ethan, but that would be looking at the glass as half empty. I find solace celebrating that Ethan was given to me in the first place. Glass half full right? I feel that I would be doing myself and the boys a great injustice if I called it quits due to fear. What message would that be sending the boys? What message am I sending Ethan?

God willing, Ethan will not be my last child. God willing, Ethan will be the first and last child I will lose. I have a feeling that my son is acting as my advocate up there in heaven. He is making me feel something that I can't possibly describe, but whatever it is...

I am not afraid.

I just have to wait and see what God's plan is for me.

FAQ: Factor VII Deficiency...

I realize that a lot of you may be hesitant to ask me about what happened to Ethan. I can assure you all that I am perfectly fine with talking about it. Being deficient in Factor VII was part of who he was and I am not ashamed of his bleeding disorder. I decided to post some FAQs about what Factor VII Deficiency is. I got this from the Canadian Hemophilia Society website and all of the information is pretty legit. If you have more questions, please DON’T HESITATE to ask. I’d rather answer questions so the truth is known. I would prefer that there wasn’t any speculation about what happened to Ethan. Without further ado, here they are...

How did Ethan get Factor VII Deficiency and are the boys okay?

A carrier is a person who carries the defective gene but is not affected by the disease. In order for a person to inherit Factor VII Deficiency, both parents must be carriers. In such a case, the child inherits two defective Factor VII genes; one from the mother and the other from the father.

If a person inherits the defective gene from only one of his or her parents, he/she will be a carrier. His/her Factor VII level may be below normal, but there will be no signs of the disease.


Figure 1 shows what can happen when a carrier of Factor VII Deficiency has children with another carrier. There is a 1-in-4 chance that a child will have severe Factor VII Deficiency, a 1-in-2 chance that a child will be a carrier and a 1-in-4 chance that a child will be normal.

Approximately 1 out of 1000 persons is a carrier of the defective Factor VII gene. However, because both parents need to be carriers of the defective gene in order to pass on the disease, severe Factor VII Deficiency is extremely rare—it occurs in 1 in 500,000 people. The disease affects males and females in equal numbers.

What are the odds right? John and I are both carriers, but we don’t have any family history of Factor VII Deficiency. I guess we were just meant to be. The boys are fine. They do not carry a defective gene.

Could it have been detected during pregnancy?

Factor VII Deficiency is often diagnosed when a newborn has a bleeding episode soon after birth, possibly following circumcision. The diagnosis is made by measuring the level of Factor VII in the blood.

However, in some cases, Factor VII Deficiency is diagnosed later in childhood or even in adulthood.When a patient shows signs of abnormal bleeding, his/her doctor normally asks for a small blood sample in order to measure the length of time it takes for a clot to form. One of the things this test can show, especially when it is prolonged, is a deficiency in Factor VII.

* Factor VII is a trace protein found in the blood. It plays a role in the coagulation cascade, the chain reaction that is set in motion to form fibrin when there is an injury to a blood vessel. Factor VII is activated, or "turned on", by tissue factor. It is turned into Factor VIIa (the "a" stands for "activated"). Factor VIIa in turn activates Factor X (pronounced Factor 10) and Factor IX (pronounced Factor 9), allowing the clotting process to continue. If one of the clotting proteins such as Factor VII is absent, the chain reaction is broken, and clotting occurs more slowly, or not at all.

Because we didn’t have any family history of Factor VII Deficiency and we already had two perfectly healthy children, there was no genetic testing needed for me. Even if there was testing performed for hemophilia A or B (the most common bleeding disorder), Factor VII Deficiency is SO rare that it still wouldn’t have been detected. Besides, even if I found out while I was pregnant, I would NOT terminate the pregnancy.

How did the Factor VII Deficiency cause a brain bleed?

Blood is carried throughout the body in a network of blood vessels. When tissues are injured, damage to a blood vessel may result in leakage of blood through holes in a vessel wall. The vessels can break near the surface, as in the case of a cut. Or they can break deep inside the body, causing a bruise or an internal hemorrhage.

Clotting, or coagulation, is a complex process that makes it possible to stop injured blood vessels from bleeding. As soon as a blood vessel wall breaks, the components responsible for coagulation come together to form a plug at the break. There are several steps involved in forming this plug.
* Blood platelets, which are very tiny cell fragments, are the first to arrive at the break. They clump together and stick to the wall of the damaged vessel.
* These platelets then emit chemical signals that call for help from other platelets and from clotting factors.
* The clotting factors, including Factor VII, are tiny plasma proteins. The strands of fibrin join together to weave a mesh around the platelets. This prevents the platelets from drifting back into the blood stream.

The most common sites of bleeding with Factor VII Deficiency are:
* the joints. This is called hemarthrosis. Frequent bleeding into a joint can cause permanent damage to the joint, called hemophilic arthropathy.
* the muscles and body tissues. These bleeds are called hematomas. They, too, can cause serious damage, if left untreated.
* the central nervous system – the brain or the spine. This can happen after an injury or for no apparent reason.
* the mouth, usually after dental surgery or a tooth extraction. This type of bleeding is quite common in Factor VII Deficiency. Depending on the severity of the deficiency of Factor VII, affected persons may need to be treated with factor replacement therapy before any dental treatment so as to avoid bleeding.

Surprisingly, bleeding during or after surgery is quite rare in people with Factor VII Deficiency, even among those whose deficiency is severe enough to cause frequent joint bleeds.

Several studies have shown that up to 16% of people with severe Factor VII Deficiency have had a bleed in the Central Nervous System, either the brain or spine. This means that good care in a treatment centre that specializes in bleeding disorders is of vital importance. Intracranial bleeding can also occur in newborns due to trauma at birth.

Ethan’s brain hemorrhage occurred spontaneously and happened all at once. He did not slowly bleed and he did not suffer any head trauma during birth. The amount of blood that escaped was far too much. He bled into the part of his brain that controls the body’s vital signs so he could not breathe on his own. Ethan’s life was being supported artificially by the ventilator. People with bleeding disorders will suffer from random bleeds in their joints, GI tract, brain, or neck. There is no way to foresee them, the bleeds just happen. Sometimes the bleeds are fatal and other times they are not. There was no surgical intervention available to save his life.

What will happen if you have another baby that turns out to be Factor VII Deficient?

Treatment with blood products or blood substitutes can temporarily raise Factor VII levels high enough to stop bleeding. This is called factor replacement therapy. Factor VII concentrates can be infused:
* at the time of surgery
* to the mother during and after childbirth
* for serious bleeding in a joint
* after trauma
* before dental surgery or a tooth extraction
* for any other serious bleeding episode

Currently, the most commonly used treatment in Factor VII concentrate. This factor concentrate is made from human plasma and contains only Factor VII.

If John and I decide to have another child, they will be extra cautious with my pregnancy. I would have to have a C-section to avoid birth trauma. The baby will also have factor VII administered immediately after birth. They can attempt to test for it while the baby is still in the womb, but the results aren’t guaranteed. Again...even if I do have another child like Ethan, I would NOT terminate the pregnancy. If we have another deficient child, factor replacement therapy is effective in treating the deficiency. Ethan did not pass from being Factor VII Deficient, he passed due to the brain bleed. Preventing bleeds by keeping the factor level normal can guarantee that any future children we have will not have an untimely ending. People with bleeding disorderes can still lead healthy, fulfilling lives.

Hope this has helped answer some of your questions. If you have any more questions that you would like me to answer, message me. PLEASE, don’t hesitate to ask. I don’t care what the question is or how uncomfortable you may think it will be to ask me. Just ask. I don’t want speculation about what happened to my son. I’ve come across a person from my past who at first tried to pretend that the "news" did not reach them. It wasn’t until after I mentioned what happened that this person said "Oh yeah, I heard." I’m sure this person meant no harm, but nonetheless it was still an uncomfortable situation. The encounter upset me a little and it changed my outlook on what I chose to disclose about Ethan. I came to the conclusion that the truth is FAR BETTER than hearsay. Wouldn’t you rather know the truth anyway?

So again, just ask...it’s better for everyone that way.

Glass Half Full...

I’ve come to the conclusion that there are worse things that can happen in life than death. The fact that life must go on despite death is even crueler than death itself. I know that sounds like a completely cynical thing to say, but it’s a fact of life and I’ve come to terms with it.

Life goes on whether you want it to or not.

I should have shut down died right there with Ethan, but I didn’t. Believe me… my heart still continues to ache with his loss, but I know that life MUST go on. I recognize that Ethan would have wanted me to be happy even though his passing has done nothing but fill me with sorrow.

I want to do what my son would have wanted so I’ve tried to move on with life. A part of me died when my son left this world and I will never be the same person again. However, it is what I choose to do with this experience that will define what type of mother I am. Yes I’m a changed person, but "what kind of different" I turn out to be is entirely up to me. Do I go crazy or stay strong? Choice number two works better for me, but it’s not an easy feat to accomplish.

Ethan’s passing has made me equally weak and strong. Losing him made me realize how vulnerable my heart really is. (I'm an emotional hemophiliac now.) His passing also made me realize my own inner strength. (I surprised myself when I didn’t go crazy with grief.)

Life threw me a huge lemon and somehow I have to figure out how to make lemonade. Eventually, I have to re-learn how to enjoy that lemonade. I’ve always tried to be an optimist, but it’s hard to see the glass as half full right now. I question my ability to see anything as "full" when I struggle to not feel so empty inside. Nevertheless, I try. Life goes on right? I try my best to make my heart stop hurting. I try my best to forget, but I’m not trying to forget Ethan.

I will NEVER forget my son.

What I am trying to forget is how much it hurts to not have him in my arms. What I am trying to forget are the last moments we spent with him in the emergency room. What I am trying to forget is the fact that I will never see him grow up. Well, trying to forget is hard to do.

No matter how hard I try to remember "only the good", certain thoughts continue to haunt my mind. The "why factor" preoccupies me sometimes.

Why did this have to happen to my son? Why did he have to be Factor VII Deficient? Why couldn’t there be a way to save him?

Obsessing about "why factors" has gotten me no where. It just makes me have a pessimistic outlook on life. Asking "why" to questions that don’t have worldly answers is pointless. I have to learn how to stop thinking about "why" because I’ve known "why" all along. To simply put it…

it was God’s will.

That should be enough right? I have to have faith that someday that answer will be enough. Eventually the "whys" will slowly fade away. The glass will slowly stop being half empty and start to be half full.

For now, I take things day by day and look forward to getting a little bit closer to "closure". His 40th day passed on Sunday so John and I have stopped praying the rosary every evening so our son can "rest". I got two steps closer to closure yesterday too. We met with Ethan’s hematologist and learned that he did indeed inherit Factor VII Deficiency from the both of us. We have a 25% chance that any male children we have will be born with it, but at least we can be prepared in the future. Should we decide to cross that bridge again, as always we’re going to hope for a girl because females are rarely born with inherited bleeding disorders since women are XX. I suppose there is some light at the end of the tunnel, but God only knows what He has planned for us. There’s a 75% chance that our next male child won’t get it, but that 25% is still risky. Nonetheless, I’m glad we know how it happened now.

We also approved the final draft for Ethan’s headstone yesterday. I’ve obsessed about giving all of my children meaningful names and looking at Ethan’s name on the headstone was breathtaking. It was beautiful. It finally dawned on me that aside from giving him life, his name will be the only gift that John and I will ever give him. In this life and in the next, he will always have that name.

Ethan Nikolas de Leon(END) – his name turned out to be so appropriate, but not in a sad way.

I don’t find irony in his initials even though some of my family members have. He was supposed to be the end of our children (if three kids was too crazy) or at least the end of the boys if John and I decided try a fourth time for a girl.

The name Ethan means "strong". Despite the fact that he did not survive the bleed, my son’s spirit was strong. He went through so much and still he went peacefully. Because all of our children have a saint’s name (Catholic tradition), Nikolas was derived from the patron saint (guardian) of children St. Nicholas. I have faith that my son is in heaven being guarded by St. Nicholas and nurtured by God.

Ethan Nikolas de Leon, my son. I miss him so much, but life goes on.

P.S. BIG THANK YOU to all of you who wanted to remember Ethan with a blanket donation. I am happy to report that the ICN babies will be wrapped in luxurious warmth thanks to you all. The blankets were lovely.