One year ago today, we were on a plane to Boston.  It was Arianna's first and only plane ride.  She loved it.  I have a memory of us in Chicago waiting for our connection.  We were standing at the windows in the airport watching the planes come and go.  This huge 747 came by, very close to the window and she and I just stood in complete amazement.  I had my jaw open and when I looked down at her, she did too.
On the 11th-tomorrow, she was admitted into the hospital.
On the 12th-her surgery.  If only I had known that was the last fish lip kiss I was going to get.  Or the last hug or laugh I was going to hear.
On the 13th-she suffered her fatal stroke and I was there, I know this is the actual date of her death. I felt her leave the room.
Finally on the 15th, we let her go.  It was very peaceful and easy for her.
It was almost a week before we were able to lay her to rest on the 21st.
I can't believe it has been a year already.  I should be planning on a return trip to Boston for her 1 year check-up.  Instead, I have friends making plans to get us thru this next week.  It's horrible.
I hate this demon we call Moyamoya.  It has taken so much from all of us.  I know there is more known about it today than there ever was and I know we continue to learn more all the time.  I am just afraid there are far too many other diseases ahead of it for a "cure" or "cause" to ever be found.
I pray for each and everyone of you who are struggling against this monster.  You are the link between the affliction and the cure.  You are the hope and inspiration of  those newly afflicted with MM. You are truly the silver lining in the gray "puff of smoke".
Peace to all.

Of course I am here sobbing.Your memories are so vivid I can feel your pain.It is such a tradgedy for this to have happened to your baby girl.We almost lost our little girl to this monster. Her eeg durring surgery went lower than Dr. Scott had seen durring surgery.Then a couple of days later she suffered a couple of stroke one very severe.It is so hard to watch this, and I feel for you and share your memory.It was at that point that I realised how helpless even the best of Dr.'s can be. We could only sit and wait and watch.Please know that your story may be the reason that the next parent will get the help they need without as much of a struggle.I hope your happy memories of your angel will stay as fresh as they are now and that you will soon be able to "visit" those memories without pain.but for now please let me thank you for sharing and send my (((HUGS))) to help you get through this week.I pray that time will ease your pain.Even as close as we came, it is still unimaginable what your pain is like and there are no words to truely help,just prayers.........I send you many....
Mary Grace

Thank you for all your help, you and Arianna are both angels.  Thank you also for staying with this board, your strength is unwavering.  I am sure it is Arianna looking over all of your posts.    

You are constantly in my prayers, you and your angel.

Janice

You are in my prayers.

I am praying for you and your family! Thank you for sharing your little girls story....my heart goes out to you!I hope all of the beautiful memories of your daughter will get you through this week!

To most parents the most unimaginable thought is to lose a child, understandably this has to be VERY difficult time for you.  May I say that since I came to this site (Oct. 2004) you have always been there to send comfort, encouragement, knowledge, and your message has reached MANY!  Go with your gut instincts, question doctors who are not specialist, and seek the most qualified surgeon for this monster!  Your strength is awesome and I will pray for you and your family during this difficult time and please know that Arianna is smiling down at you from heaven above and I am sure VERY proud of the comfort and knowledge you bring to others.
Bless You,
Kathleen  [smiley=hug.gif]

  Your family has been in my thoughts and prayers all week.I hope your friends and family have been a comfort to you durring this very difficult time.You have been such a source of strength to us all I hope our words and prayers can offer you the strength and comfort you need now.Thank you for sharing your angel with us.((((HUGS)))
Mary Grace

Tammy----sorry that I haven't been on lately to offer you my prayers and comfort during a very difficult time.....your story about Arianna also brought me to tears......I will continue to keep you and your family in my prayers.......you have offered so much comfort to other people on this site.......your suffering during this time of trial has shown that you have tremendous perserverance, tremendous character, and ultimately, character produces hope......I believe that your Angel Arianna watches over you everyday........With love and God's blessings to you and your family.....Pat

Welcome back to the board, PatM!

-Shari

I second that!!!  WELCOME BACK PAT!!!!!! I have missed you.  You must be feeling much better after your recent set-back.  I have sent personal emails to you. Have you gotten them?  Take care my friend. Laura from Louisiana [smiley=hug.gif]

Tammy, I am so sorry to hear about all you have gone through.  I only occasionally visit this board and I had no idea that you lost your baby.  I am so sorry.  

I remember some of your previous posts -- it was so nice to read them.  

All I can say is that I am sorry.

I will pray for you.

Patti

:-*
    Dear Tammy You and your family have lived through a horror.  How will you get through it? With the help of your little angel.  She will watch over you.
    Ten years ago my sister died from brain cancer, we were all so worried about my mother who is a very fragile nervous type but when it happened she shocked all of us with her strength and we all knew that my sister Fran was by her side.
You're in my prayers and I'm sure that Arriana has a busy week planned to be by your side.

Take care Tammy :-*  Tom

Tammy,

After having been diagnoised with MM a few weeks ago, I can only imagine the pain and sorrow that you are feeling. Please do your best to keep your spirits as high as possible. Remember the good times, the fish kisses, and the laughs/hugs/snuggles. My prayers are with you and your family.

Greg