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Monday, December 27, 2010

This is my favorite video!

Listen to Brextin's giggle - he would only giggle like this when tossed in the air or swung side to side - that is why the video is blurry - because the camera was in my hands as well - I am SO glad that I caught this on tape!!

Monday, December 20, 2010

My first Christmas in heaven

This poem was written by a 13 year old boy who died of a brain tumor that he had battled for four years. He died on December 14, 1997. He gave this to his mom before he died. His name was Ben.

I see the countless Christmas trees around the world below
With tiny lights, like Heaven’s stars, reflecting on the snow
The sight is so spectacular, please wipe away the tear
For I am spending Christmas with Jesus Christ this year.
I hear the many Christmas songs that people hold so dear
But the sounds of music can’t comparewith the Christmas choir up here.

I have no words to tell you, the joy their voices bring,
For it is beyond description, to hear the angels sing.
I know how much you miss me, I see the pain inside your heart
But I am not so far away, we really aren’t apart.
So be happy for me, dear ones, you know I hold you dear.
And be glad I’m spending Christmaswith Jesus Christ this year.

I sent you each a special gift, from my heavenly home above.
I sent you each a memory of my undying love.
After all, love is a gift more precious than pure gold
It was always most important in the stories Jesus told.
Please love and keep each other, as my Father said to do
For I can’t count the blessing or love he has for each of you
So have a Merry Christmas and wipe away that tear
Remember, I am spending Christmas
with Jesus Christ this year

A very special gift!

The Very Special Gift
By S. Guevara

Once upon a time, three angels were busily working in the miracle factory. They were responsible for wrapping up all the little miracles and sending them on their way. Normally they wrapped each one in bright, sturdy paper with big, shiny ribbons. They stamped them with a delivery date and away they would go to the parents who eagerly awaited their arrival. Things usually ran pretty smoothly.

One day, however, down the conveyor belt came a little miracle that made the angels pause. "Oh my," said the first angel "this one's uhm...well...different." "Yes, he is unique" said the second angel. "Well I think he is quite special," said the first angel "but I don't think he will quite fit our standard wrapping procedures." And the second angel added, "And we know he's special, but will everyone else?" "Not a problem," said the third angel "obliviously a special miracle deserves extra special wrapping; and of course we'll send him off with our most heartfelt blessings. Then everyone will see how special he is." "What a wonderful idea!" replied the othims. So they searched the shelves high and low for their finest paper, and their most delicate ribbons.

When they were done, they stood back and admired their work. "Beautiful!" they all agreed. "Now for our blessings," said the third angel "for it is time for him to go." "I will bless him with innocence and happiness," said the first angel. "And I will bless him with strength to face the many challenges that lie ahead" said the second angel. "And I will bless him with an inner beauty that will shine on all who look upon him" said the third angel. Before sending him off the third angel, who was very wise, gently tucked a note inside.

And it said,

"Dear Parents:

Today you have received a very special gift. It may not be what you were expecting and you may be disappointed, angry and hurt. But please know that he comes with many blessings. And, while time may be pain, he will bring you much joy. He will take you on a very difficult journey but you will meet many wonderful people. He will teach you patience and understanding and make you reach deep inside yourselves to find a source of strength and faith you never knew you had. He will enrich your lives and will touch the hearts of all who meet him. He may be fragile but he has great inner strength.

So please handle him with care. Give him lots of attention and shower him with hugs and kisses. Love him with all your heart and he will blossom before your eyes. Him spirit will shine like the brightest star for all to see and you will know that you are truly blessed." 

Sunday, December 12, 2010

National event: Light a candle for all children taken way to early!

At 7:00 p.m. on December 12, 2010 please light a candle in memory of our son along with the many other children who have been taken way to early in life.

Compassionate Friends organize the event.

The Compassionate Friends, with nearly 630 U.S. chapters, is the nation’s largest self-help bereavement organization for families going through the natural grieving process after the death of a child. Members include bereaved parents (or anyone in that role), siblings, and grandparents.

For more information, visit or call the National Office at 877-969-0010. TCF’s Facebook Page with more than 14,000 members can be reached through the organization’s website at The organization also has an Online Support Community with trained moderators and daily sessions.

Saturday, December 11, 2010

Been thinking and struggling. . .

Earlier today I received some news that we have now lost another child who was a member of our Infantile Spasms community (he was only 4 years old) - which caused me to flash back our son's passing -

I have been struggling these past few days - like yesterday - I just began to cry while driving down a road. The night our son left us keeps flashing in my memory after hearing we just another member's son. I keep replaying it step by step. Getting the phone call around 10 pm while sleeping with my oldest son - and picking up the phone only to hear that Brextin has taken a turn for the worst and that he was being placed on a breathing machine and that I needed to get to MN as soon as possible. I then quickly called my daycare provider who came over right away to help comfort me and to take my oldest son with her. (she only lives 4 blocks away) Then I called my parents and my in-laws to fill them in - my mom and dad came and got me and we quickly drove to the cities. On my way there I called every pastor that I knew and left messages asking for prayers then I started to text everyone I knew asking for even more prayers - I then received a call from Andy telling me that he was getting his color back and everything was improving. So I started to calm down. Then once we got to the hospital the ER has a special lock down so I had to push an intercom asking to get in to be rushed to the PICU - there was another family who arrived at the same time - their father just had a heart attack - we were able to hug each other for support (a total stranger) then once I got to the floor I heard a child who was babbling just like Brextin did and I thought everything was ok - until the nurse directed me to the only "glass" room in the unit - then I walked in to notice my husband holding our son- (who I thought was sleeping) only to glance up and notice my husbands eyes were totally bloodshot and that is when he said - "we have lost him" I quickly fell to the floor and just screamed - how could I have missed saying good bye to our son!! Especially since he was bouncing and babbling just the day before and even sucking on his fingers - where did everything turn ugly?? Then shortly after my parents entered the room as well - while I was holding our son with a breathing tube in his mouth (unconnected) and I had to tell them - we were too late to say our good byes - it was so painful to say those words! I even wore my shirt that read "Love and Hope for Brextin" in hopes of everything being ok - I continue to have save the same shirt since my son's blood remains on it and I will never wash it -

For some reason - I thought by me sharing or venting my story out one more time would give me peace - ooh how I miss my little guy - I sure do miss him this holiday season - oh how I miss him!!

We will be attending a local event tomorrow night - it actually a national event (World Wide) - at 7:00 pm tomorrow it is encouraged that everyone lights a candle in memory of the many children who have lost their lives so soon - I ask for anyone who is reading this right now - please please light a candle in remembrance of all of our children - thank you so much!