"Hold Me Daddy"

"Hold me, Daddy"

It’s not that I was surprised to be inspired. I was, after all, in church. It wasn’t so much the location of the inspiration as it was the source.
We had all just stood up. The homily was over and we were getting ready to profess our faith. I know I should have been focusing on the stream of words coming out of my mouth, but as too often happens, I allowed my wavering attention span to wander around, taking my focus with it until landing on the family a couple of pews in front of me.
And then I saw it.
A young girl stood next to her father, leaning into him as if her own body could not support her light weight. He continued to recite his profession of faith.
And that's when it happened.
Somewhere before our petition of prayers, the little girl must have decided the support from the lean wasn't enough, as she instinctively held her arms up to her daddy who picked her up without a moment’s hesitation.
The reason this caught my attention was that she appeared too old to be held. I wouldn’t have paid attention if she were three or under –but this little girl seemed years beyond the holding stage, and yet her father picked her up the moment she asked.
Without any prodding or pleading, he picked up his daughter and held her for the rest of the standing portion of the service. Contented, she nuzzled her head on his shoulder with a look of peace that we adults just can’t mimic.
It was that simple. She asked to be held and her daddy held her. And even though I was surprised by the request being made at her age, it somehow looked so right.
And of course, it made me think.
Why do we too often equate losing our ability to ask for help with losing our youth?
Many times in life we might find ourselves growing weary, hoping for someone to lean on.
But we’re too big, aren’t we? Shouldn’t we find a way to handle it all on our own?
Life would be so much simpler if we could all remember no matter how old or self-sufficient we think we are, we are still God’s children. Like the daddy in church, God is always there for us to lean on.
And when we need more than leaning for support, how happy it must make our Father if we could only remember to instinctively raise our arms to Him and ask to be held. For it is only in our Father’s arms that we might find the true peace of a contented child.
- Tammy Bundy


I wanted to share this story with you all. Beautiful, isn't it? Hope it serves as a simple reminder that you should lift your arms up to Him whenever you are in need. God will lift you just as you would reach to pick up a child with outstretched arms. He will carry you through any adversity you may face. I've held my arms up to Him and I am content with everything God, my Father, has given and taken away.

Have a blessed evening. :-)

Eulogy...

Many of you may remember that there wasn't a eulogy at Ethan's funeral. Only one message to Ethan that was written by sweet KC. My heart was hurting at the time, but I realize now that had I so much I should have shared about my boy.

I watched several beautiful eulogies on television today and it made me miss my baby. It made me miss the life I thought he was going to live. Four men suffered unjust deaths and thousands of people came to honor them. It's a sad day in the Bay Area. These brave men graced this Earth for much longer than Ethan did so there was much to be said about their lives. The eulogies I saw today were absolutely moving.

Ethan was a baby when he passed...a week old. It was John and I who knew him best so I realize now that we were the only ones how could have delivered this important tribute. He simply did not have the opportunity to meet everyone. A little over a year later and I regret missing the opportunity to eulogize my son. That moment has passed, but I will say this...

An ordinary person does not accomplish much in seven days, but Ethan was extraordinary. Life is about not quality, not quantity. He was special in so many ways. Ethan was "just a baby", but he changed the world.

God bless those four men and my little man in the sky.

The END is only the Beginning...

The blood drive was a success!!! Quite a few people were turned away, but we still had THIRTY successful donations today. That equals 90 lives that Ethan inspired people to save.

HOW AWESOME IS THAT?!

Ethan will live on in the lives of the people touched by his blood drive. Everything has officially come full circle. BIG thank you to everyone who donated, tried to donate, or will donate in the future. Blood donation is a completely selfless and noble act and I commend each and every one of you.

THANK YOU FOR HONORING OUR SON.

This blood drive was all the more special since Niki also has FVII Deficiency. She has already received fresh frozen plasma and had a blood transfusion before she was discharged from the hospital. All of you saw how healthy & beautiful she is. She is here today thanks to God, Ethan, caring doctors, loving nurses, Novo 7, AND from the donated plasma and blood she received in the hospital.

John and I will be taking a trip to Blood Centers in a few weeks when I am finally able to donate. If anyone wishes to join us, please let me know. :-)

And for those of you who donated, you've been entered for a raffle on a 50 inch plasma TV. If you win it, let me know. Don't forget to donate every 56 days!!! The end is only the beginning!

The Ethan Nikolas de Leon Memorial Blood Drive

If anyone plans on participating in Ethan's drive this Sunday, please let me know. I still have some appointments available.

Can't wait to celebrate Ethan's life with you all! :-)

Ethan Nikolas de Leon

Today marks the one year anniversary of Ethan's passing. In the past year I've learned lot about myself and the strength of my faith in God. I've dreaded and welcomed this day. Although I want to "close" the "grieving chapter" of my life, I didn't want to stop feeling sad. Having Niki has not taken away the pain of losing Ethan and it's hard for me to "let go". I am slowly forcing myself to "find closure" because I know Ethan would have wanted it that way. But...


I still miss him EVERY DAY.
I still wish he could be with us EVERY DAY.
And EVERY DAY my heart hurts for what wasn't meant to be.


However, it is time for me to stop feeling sad about "my loss" and start looking for happiness in the time I did have with him, "my gain". I am fortunate for the lessons Ethan has taught me. I am fortunate that God blessed me with Ethan even though he was only on loan. My "borrowed angel" served his purpose in the week he was on this earth. He educated medical professionals, strengthened my bond with John, brang me closer to my God, taught his brothers about compassion, helped his sister live, and inspired soooo many people to save lives.


My baby has made a bigger difference in one week than some do in an entire lifetime. John and I are so blessed that Ethan was chosen to be son and I wouldn't wish to have it any other way. The past year has been a rollercoaster of emotion, but it was a rollercoaster worth riding. God loved me enough to teach me valuable life lessons at an early age. I miss Ethan. I will always miss him. But...I am so BLESSED for having him. I realize this and I'm okay with it.

I thank God everyday for everything He has given and taken away.

FVII Deficiency...

The primary complication of FVII deficiency is an increased bleeding tendency. Because clotting occurs slowly due to the absence of adequate Factor VII, people with FVII deficiency may experience more frequent and longer bleeding than people who do not have FVII deficiency. The severity of a person's FVII deficiency affects where, how often, and how long he or she bleeds.

Bleeding may result from an injury or may be spontaneous. Excessive bleeding may also occur during menstruation and invasive procedures, such as surgery.

For people with FVII deficiency, bleeds may be experienced in the following parts of the body:

Nose
Gums

Intestines
Joints
Muscles or other body tissues
Central nervous system (the brain or the spine)

It's important for family and friends to fully understand Niki's condition. She is not fragile, but there are certain precautions we need to take to keep her safe. Niki can still live a normal life and I want to be 100% sure that you all know this. We just have to treat her like a lady, that's all.

I got the information above from her factor manufacturer's website. John and I will be giving Niki factor on a daily basis to PREVENT major bleeds from occuring. Thankfully, she did not have a head bleed during my delivery. She may still suffer the occassional bleed, but her factor dosages should help keep her FVII level in check.  So to clear up the confusion...she is not going to have the same fate as Ethan nor does she have brain damage. She is a normal, sweet baby girl who happens to have very special blood. :-)

P.S. Her surgery went fantastic. NO BLEEDS! We hope to bring her home in a few weeks. Thank you all for your prayers.

One Year Later...

Ethan's 1st Birthday has finally come. It has officially been one year since God blessed us with our first unique miracle.

Time flies doesn't it?

I wish I could have celebrated his special day differently, but I felt his presence with me all day. I missed him terribly today, but I also started my morning with a new sense of strength and peace.

I think I'm finally starting to get used to the "new life" I must lead and...I'm okay with it. It was Ethan's birthday, but he's the one who gave me the gift. My baby has given me hope.

I am so blessed to be his mother.

Prayer Requests

I firmly believe in the power of prayer....
Ethan's birthday is tomorrow, Friday Feb 20th. Please keep this special day in your thoughts.
Niki will possibly have surgery tomorrow or over the weekend. Please pray for her speedy and safe recovery.
The hematologists will be fine tuning her medication over the coming weeks. Please pray that they find a dose that works for her so we can take her home.
Please pray that Niki stays BLEED FREE.
Lastly, pray for our strength in the coming days, weeks, months and years.
Thank you.

The Queen Has Arrived...

Name: Annika Nikole de Leon
Date: Monday, February 16, 2009 - President's Day
Time: 5:54am
Weight: 7lbs, 1 oz
Length: 20 inches
Head: 14 inches
Features: She's cuter than the cutest button in the universe! She has Boo's lips and eyelashes, Kevin's hairline and nose, & Ethan's eyes and chubby cheeks. :-)

We refer to Niki  as"The Queen" because she is very special and isn't like all the other princesses. :-) God created her to be just as rare as Ethan...1 out of 500,000 to be exact. Annika is FVII Deficient (Factor 7 Deficient) and will live a very unique lifestyle. She may have a "deficiency", but she will be treated like royalty ALL THE TIME.

The severity of her deficiency is almost identical to Ethan's decificency which means she must always be handled with care. I will share more details as the days move forward. In the meantime, I just wanted to share how ecstatic John and I are to finally meet our baby girl. She is very healthy, strong, and is here to stay. :-)

Let's all continue to rejoice her safe arrival into this world.

Two more weeks to go...Ethan's birthday is almost here.

I'm starting to feel sorrow close in on my heart as the days draw nearer to February 20th. I've missed Ethan terribly these past few days. I feel the same ache I felt when I smelled his scent for the first time. My arms are "heavy" with emptiness again.

I just want to hold my boy on his birthday.

I've comforted myself with the idea that celebrating a birthday in heaven is waaaay better than any party John and I would have thrown him. Ethan is lucky ...clouds, angels, and God...what's not to like right?! But still...he's my child and I wanted to see him devour his first birthday cake just like Kev and Boo did.

I had a game plan for my life with my son, ya know? This was one of the silly things I wanted to remember in my old age. There were pictures I wanted to take. Memories I wanted to retain. This was a  moment in time that  wasn't meant to be. I would have NEVER guessed in a million years and...

it hurts.

Religion

've never been a "hardcore Catholic". I "live in sin" for chrissakes so please don't think I've gotten completely "right-wing" all of the sudden. I engage in premarital sex (thank you John!) and for damn sure haven't been a "good Christian girl" my entire life! But....I'll never be the first to pass judgement on people when it comes to their relationship with God and/or the choices they make. Losing Ethan simply made me more aware of God's presence, that's all.

He is everywhere if you open your eyes to it!

I try my very best to include Him in my daily life. I believe the closer I am to God, the closer I am to my son.  I want to do everything I possibly can to secure my place in heaven. Ethan died "sin free" and baptized so I KNOW he's in heaven. Although I cannot do a thing to change my sins,  I try my best to repent and learn from the mistakes I've made. Meaning, I've already vowed to myself that I will not make the same mistakes again. I'm not perfect, but I like to think God knows I'm trying my best to keep Him present in my life.

Boy, it ain't easy though!

Especially since I didn't grow up in a particularly religious household. I wasn't even Catholic to begin with. My sister and I converted in middle school because we felt "left out" when everyone started attending Confirmation class. Aside from this fact, we also felt "closer to God" when we attended Catholic Mass on random Christmas Eves.  Catholicisim just seemed like the right choice and I am sooo happy with our decision.

But, maaan...is it hard to be good!

It's hard to hold my tongue. It's hard to be "Christian" all the time. It's hard to truly forgive. I'm human afterall and shit just pisses me off sometimes. And more times than I'd like to admit, it's hard to completely "brush my shoulders off" when something or someone hurts me. Haha, and I'm embarassed to admit that I actually feel a little guilty for all that premarital sex I mentioned.

Who would have guessed right?! Ms. "Sex Therapist" herself feels bad about sex.

I'm terrified to attend Confession, but I still receive Communion. That is a big no-no my friends! But seriously, if I went to confession now I'd be a hypocrite. There's no way in hell I can give up coitus until John & I finally scrounge up the cash to have a big ass wedding. I really don't know if there is a point to all of this rambling, but I just wanted to share my thoughts for today. But I will say this...

Catholic Radio has had a great deal to do with my recent faith formation and awareness.  Seriously, give it a shot.

Awake..

Awake...

It's nearly 3am and I can't sleep. I've been particularly stressed these past few days thanks to the thousand items I have on my "to do" list. I have SO much going on that I get exhausted just thinking about it. I suspect that is why I haven't been sleeping much.

I am slowly starting to feel a great deal of anxiety building up inside of me. February 20th is just a few short weeks away and I am excited and terrified all at the same time. Niki will be here soon and I'm ecstatic, but 25% still looms over my head.

I've procrastinated on getting ready for this baby because I am afraid she is destined to have the same fate as Ethan.

We won't know whether or not she is FVII Deficient until she is born. I'm delivering vaginally (no more c-section according to the specialists) so naturally, I'm worried about the possibility of a CNS bleed.  I'm scared. At the same time I have faith that everything will be alright. I've even purchased a few special novelty items for my daughter, just in case. I know that God and Ethan are watching over us, but I still feel twisted inside. Only God has the final say in His plan. My heart is heavy with anticipation, but I hide it well.

Contrary to popular belief, John and I have NOT "moved on". I fear my current pregnancy might have sent out the wrong message to the general population. Smiling does not mean I've stopped feeling emotional pain. I've simply adapted to my new life and have found ways to meet "normalcy" half way. Niki is not our "replacement baby" nor is she Ethan's reincarnation. She is a gift from God who just so happens to share a significant date with Ethan. Although I do take this coincidence as a sign from Him, the sign itself has not miraculously healed me.

I still yearn for my son everyday and my heart aches just as badly as it did nearly one year ago.

I've survived the chronic pain I feel in my soul thanks to my "immersion technique". This has been my "pain medication", so to speak. Rather than "hide" Ethan away and run from the pain, I've placed him everywhere in my day-to-day life. I visit him every day, his pictures are everywhere, and I talk about him all the time. I've trained my mind to feel like he's still physically here with me. I falter when I am reminded that he is gone.

I weep when I remember that I prepared myself to spend a lifetime with my Ethan, only to have that "life" cut short.

February 20-27th 2008 is important because it is the one week that I will remember for the rest of my life. These were the seven days that God let me borrow an angel. It is a special time and I will celebrate the little advocate I  have waiting for me in the clouds. I miss Ethan.

He is irreplaceable and will always hold a special place in my heart.