The following blog post was written by Jonathan Agin on September 11, 2011. Jonathan's daughter Alexis died as a result of cancer as well. I have asked you to pray for him several times since I began reading his blog....as he has expressed several times that he does not believe in a "higher power". I am posting his blog post because it puts into words what I feel but have not been able to say....
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written by Jonathan Agin

I want off......

September came around & the childhood cancer community sprung into action painting everything gold, the color of childhood cancer. You see, if you don't already know, September rings in Childhood Cancer Awareness Month. It marks a short amount of time before the world turns pink for breast cancer awareness month. I actually was not looking forward to this month. There is such a push to recognize this one month versus all others. And, although there is importance to this push, there are 11 other months where every single day 46 children are diagnosed with cancer. And then I wanted out. For 41 months childhood cancer has been another member of our family. It has resided here, taken a seat at our table, shared our bed, eaten our food and sat with us each night as we have tried to unwind. It was never invited into this house, much less invited to inhabit my beautiful daughter's body, but yet, it has resided with us. I sometimes get to a point where I have had enough. I have read enough facebook posts, seen enough journal updates, read enough about children dying that I don't want to hear it anymore. I get to a point where I don't want to hear it anymore. There is too much pain experienced by so many families that it is almost too dificult to continue. Something keeps me from doing so though. Be it Alexis, be it committment, it's like an accident on a freeway, I can't turn away from it. I wish sometimes I could. There is no right or wrong way to proceed after losing a child from cancer. Some choose to reinvest themselves even deeper into the fight. Some cannot continue and want nothing more to do with this beast. I don't blame either frankly. It is not a world understood from the outside; rather, to even begin to understand the actions of a parent following the loss of a child from cancer one must experience the steps we take. With that in mind, I hope that it is not an experience anyone else ever has to have.

Each day, hour by hour, minute by minute, Alexis is missed. That's an understatement of course. It sucks. Never in my life could I have imagined dealing with this type of loss. We've been through a lot in this life. I've had enough loss and drama in the last 9 years to fill several novels. I'm reminded on this day that 10 years ago Neely and I fled DC on foot and walked 7 miles to our house with smoke billowing from the Pentagon about a mile away from our house. And yet, I focus on Alexis. That doesn't mean that the loss that was sustained 10 years ago on 9/11 isn't on my mind, it certainly is. It is a wierd dichotomy. From personal loss to the loss that we as a nation sustained. We will never close our eyes and wake to the same world that we inhabitted 10 years ago. And, I will never close my eyes at the end of the day and wake to the same world I inhabitted prior to April 2008. Acts and occurrences can completely alter the manner in which our realities have been shaped as human beings. Maybe that is the point of existence to continue to experience. I simply wish that there wasn't so much pain.

Tomorrow Gabe starts school for the year. Last Monday, Alexis should have begun kindergarten. Through the course of last week we watched as picture after picture of kids going to school inhabitted our house in many differing medium. It was a constant reminder of the fact that Alexis never moved on. Of course we are happy for those who we know who's children move on. As days continue to pass to months, the sense of stagnation and loss will remain. Alexis is a part of everything we do. Always.

This morning, I competed in the Nation's Triathlon. It was held right in DC. It was held on 9/11/11. Ten years later. There were concerns about safety and concerns about security. But it was important for me to be there. Important for several reasons. First, to mark this occasion. Second, and just as importantly to me, because my daughter never gave up. She fought, and she never asked why. She never once stopped. And that, for me is the reason I contiune. That for me is more inspiration than I will ever need. And so, by me putting one foot in front of the other, pushing my pedals, I bring in Alexis' essence. Stronger than I could ever be, she is and always will remain to me the true definition of hero.

One day melds into the other, and each one takes us further away, yet brings us closer to Alexis. Soon baby, soon.

Love,

Jon, Neely, Alexis and Gabe

Aug 5, 2011

August 5, 2011 makes one year since I watched my precious "first born baby" leave this earth....Holding her as she took her last breath & stepped into heaven...It was a day that forever changed my life. To say that this last year has been hard would be an understatement BUT the pain has been ALL ours & for that I am very thankful. You see...while Katie was here on earth the pain was hers to bear. Oh yes, I had pain too. I am her mother & seeing her hurt was HORRIBLE in ways that you cannot imagine. But the pain from the cancer itself, from the chemo & radiation aimed to kill the cancer, & from all the needles...all of that pain was her's...some of which I had to inflict on her. You do not know the strength you have until you HAVE to give your child a shot or change her central line dressing (pulling it off HURTS) or make her drink horrible tasting medicine that she begs you not to give her. It is a strength that you do not want to know that you possess. All of this pain was hers....and this past year she has HAD no pain. She is in Heaven & knows only joy. Of this I am positive. Many people may think that they do not know how we do it...going through cancer with our child & then having her die. I can tell you exactly how we do it...WE DON'T but GOD DOES. We could not have made it through this past couple of years without HIM. I can honestly say that I do not understand His plan but I do trust His plan. This past year we have thought of Katie EVERY single day. You may think that is a generalization or being dramatic but it is a true statement. Honestly, do you think of your children every day? Well so do we. I see her often in the world around me...and I hear her often in her sister. Laura Beth is a precious gift...one that keeps us laughing & smiling. We could not have made it through this past year without her precious smile. But...she often laughs like Katie or says things like Katie. And she often talks about Katie...when anyone is sick she will say, "Sick like Katie?" Sometimes these likenesses make me laugh & sometimes they make me cry. Laura Beth always says "I miss Katie" or "I love Katie" when she sees me crying...even at 3 years old she knows how much her big sister meant to me. Thank you all for your love & care for us over the past 3 years....

Blessings

I have heard this song often lately & it speaks to me...in so many ways. I hope that it helps you too. Sorry that I haven't blogged in about 3 months but life has been crazy busy. Have a quiet day to enjoy your family =)
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BLESSINGS
Artist: LAURA STORY.
Album: Blessings


We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things

‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
You long that we'd have faith to believe

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not our home

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

Baby Thomas

Please be in prayer for my friend, Holly & her whole family. She gave birth to Baby Thomas yesterday and from what I have seen on Facebook, he is still hanging on. (For those who didn't see my earlier post about Holly & Baby Thomas...he has anecephaly which means that his brain did not develop correctly and he will died shortly after birth. He may live days, weeks, or months...) I know that Holly is physically and emotionally exhausted and could defiantly use your prayers. Please join me in prayer that she & her husband, Aaron, will be able to enjoy every single moment with their son. Also remember Baby Thomas' big brother and sister as well as the rest of their awesome family.

AMAZING

Today I met a little girl who reminded me so very much of my Katie. She looked nothing like her other than being so small for her age BUT boy she sounded like her. Her laugh is what took me in first. It was that same high pitched totally happy full body giggle. I hadn't even realized that I had forgotten it till I heard this beautiful angel. Her mannerisms and her stubbornness was like that of Katie. She was a very smart little girl despite her other problems. And she said many of the same things that Katie would have said and in the way Katie would have said them. What I found utterly AMAZING was that hearing this little angel and seeing my beautiful "first born baby" in her made me SMILE!!! I wasn't sad or upset BUT instead I was happy and so thankful that not only did I get to meet this little girl but I also got to hold her and hug her. Please pray for this little angel and her family as she does have physical limitations...it does not matter her name or condition...God knows them both and he has something wonderful in store for her!

Thank you Lord for release from my guilt and sadness over my precious baby and thank you Lord for releasing her from pain.

Time..

First I would like to apologize for not writing the past 2 months...my computer at home is broken and I have not had a moment to sit down at a computer and write...

For a while I have wanted to write a blog about being a mother with a heart in two places (one with Katie and one with Laura Beth)...but putting that into words is just too hard. I can say that God has done a miracle in my life. This past weekend I went on a church retreat called "Tres Dias". It was an amazing 3 days of laughter, tears, and hugs! At first I was very MAD to be there...I couldn't understand what was wrong until someone said, "well you must be mad because the Holy Spirit is trying to do something in your life and you are fighting it." I was fighting it....I was being stubborn and not giving up my pain....but God in his wonderful way got through to me...he broke through those walls and blew the lid right off the box that I had put Him in! I was able to let go of the guilt that has plagued me since Katie's death. Although there was absolutely no way I could have prevent her death I have felt guilty...I SHOULD have been able to do something...if I just hadn't scared her by picking her up that day then she would have lived longer or if I had chosen a different option instead of trying for the MIBG radiation then she would have lived...all of those things that really wouldn't have changed anything. God had her days numbered before she was born. She had accomplished her reason for being on earth and it was time for her to go HOME. But as a mother it was hard to let go of the guilt but praise be to God that I was able to.

I pray that as Easter is approaching that every one will take time to have fun with their children hunting eggs and that you will take time to thank our Risen Savior for everything he has done in your life and the sacrifice that He made to GIVE you life.

I have heard the following song several times over the last couple of weeks and it has really rang true for me...thought I would share.

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Bring The Rain
Artist: Mercy Me
Album: Coming Up To Breathe

I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray

Snow DAY

This week has been a hard for me for a variety of reasons...but it ended on a good note! Today we got some snow! Laura Beth and I stayed home all day together (William had to work last night and tonight so he was sleeping during the day!) Laura Beth & I had a great time together! We baked some cookies and made homemade chicken & dumplings together! It was fun. And then after a nap we spent some time out in the snow! All in all it was a great day...

Hoping tomorrow will be okay. Feb 5 marks 6 months since Katie went to heaven. It has been a hard 6 months and I miss her each and every day. They say that time heals all wounds but I think that they are mistaken. Time makes it somewhat easier because you get use to living without her but it isn't something that you want to get use to. Little things remind me of her...things we use to do or things that she loved...And though I hope that some day these reminders will make me smile, right now they make me sad because I miss her. Laura Beth has been talking a lot about Katie lately. She says things like "I hug Katie" or "Katie gave me Jessy" (Jessy is Katie's favorite doll that went everywhere with her). It makes me sad and happy. I am sad for what Laura Beth has lost and I am happy because Katie would want Laura Beth to remember her. Thank you for continuing to follow us on this journey...and for praying for us because we still need those prayers very much.

Here are some pictures from the day!

Country Girl!

Snow Angel
Snow Smiles!

Our Little Snowman!

Remembering

This week has been a difficult one for me. On Monday, Laura Beth and I were coming home from dance class and she was singing. I asked her to sing "Twinkle Twinkle Little Star" (she had just learned it at dance class). She began singing it and then stopped and asked, "Where's Katie?" I told her that Katie was in Heaven with Jesus and her response was..."I'll fly to Katie!" My heart was broke. (One of Katie's favorite songs was "Twinkle Twinkle Little Star".)

Then last night, I was rocking Laura Beth to sleep. She had been having a rough night and had had a few melt downs. Out of the blue she said, "I like Katie" I told her that I knew she did and that Katie loved her. Then she said, "I hug Katie". Of course I began crying...it confused her and she asked "You okay?" I reassured her...we rocked some more and then she went to bed.

I am sad at what my sweet monkey has lost...she lost a sister, a friend, a confidant, someone to fight with, and someone to learn from. She lost a great big sister who loved her and wanted to protect her. We all long for the day that once again our family will all be together in Heaven with our Lord and Savior.

Happiness, Sadness, and a need for Prayer

Happiness
Colby continues to be cancer free! Colby is a little boy who lives in College Station. He had neuroblastoma but has been in remission for a while. His latest scans show that he continues to be free of this terrible disease. Praise GOD!!!

Sadness
Alexis Agin passed away this past Friday. She is finally free from being stuck in a body where she can not move or talk BUT her family is aching from the loss of their beautiful little girl. They are Jewish and many times her dad has expressed on their blog that he no longer believes in a higher power. I ask that you pray for him to find peace and find Jesus in all of this sadness. Their blog is http://www.caringbridge.org/visit/teamalexis

A need for Prayer
Please pray for a friend of mine, Holly Bush and her family. Holly is pregnant with her second son. She and her husband recently found out that their son has anencephaly. This means that his brain has stopped developing and his skull is not forming as it should. This also means that their son will not live for very long once he is outside of the womb. Please pray for Holly and her family as they go through this very difficult valley.
You can follow them at her blog http://thelittlejourneyofbabythomas.blogspot.com/

Another update...Kodi Tutt is in San Francisco receiving her MIBG treatment. She is 6 (if I remember right!) and has neuroblastoma. From what I have read, she is doing well. Please pray that she can continue to handle the emotional impact of being separated from her family during treatment and that the treatment will completely abolish the cancer inside her! http://www.caringbridge.org/visit/koditutt

As for us...well each day brings new reminders of Katie. It is a variety of small things and quite often they catch us off guard. For example, tonight I took Laura Beth to the potty and was telling her to push to make sure she got all the te-te out...and I was reminded of when I had to do the same thing with Katie...it made me so sad... But life goes on....right? =)

Happy New Year

2010 ended with a bang...When we turned into our driveway on Friday we hit Dash with the car. I immediately got out of the car to make sure that the car wasn't on top of him and when I reached down he bit my hand. (I am fine other than a hurt pinkey) Then he ran away. We couldn't get to him that night. The next day we couldn't find him until after lunch time. We took him into the vet on New Year's day. The vet said nothing was broken and that most of his organs looked okay. His lungs had a lot of fluid and blood in them. He gave us 4 prescriptions and told us to keep him in his kennel for a week or so. So far he has been making it okay...not great but he isn't out of the woods yet. Please pray for Dash. Dachshunds are so fragile as it is and when you add getting hit by a car it isn't good....