A sense of normal.

Well Father's Day was a hit!  I had a really good time spoiling my dad with a day out.  My dad is so hard to buy for because he buys everything he likes for himself.  Books... he buys before they come out on Amazon.  So Chris and I got him coffee for the Kuerig.  X Bold.  He likes good strong coffee.  We went for La Morinta's and Yogiliocious!  A day filled with pictures and fun times.  We even went to Lodi to visit my Grandpa Nelson's grave.  Putting flowers and remembering him always. 

Chris was in a great mood.  Joking, teasing, arguing, knowing everything, and full of lots of conversation.  He was his usual take 10 pictures to get the one that has a smiling regular smile and face.  On our way home after everything was finished I started to think... things seem kinda normal.  Kinda like I am enjoying Chris's humor.  Like this is how he has always been and I am enjoying it again.  Then I began to wonder for the last 6 months has he continued to be his normal self and I was just so stuck in my grief that I didn't notice or was he grieving and was not himself either.  I don't know.  I just know we got a glimpse of a good day, a day filled with laughter and sometimes frustration because Chris wouldn't leave me alone!  (In a good way!)  I have missed those times with him.  I hope this was the beginning of many more times.

 After I dropped Chris at home I headed to the cemetery.  Chris doesn't like to go there.  I really don't blame him because to tell you the truth, I have never liked going to the cemetery and only went there when I absolutely had to.  I would go once a year on Memorial Day to visit my grandparents.  Now I have changed because my daughter is there and I want to go visit her.  I will never have new pictures of her or new memories so I go to remember and to visit and to take pictures. 

First stop was my grandfathers grave.  I put flowers and remembered him.  I remember when we lived in Texas Grandpa and Grandma would come to visit and we would take all their stuff to the flea market to sell.  We would stay different places for the weekend.  It was fun and I loved pretending like we were camping, but making money.  Grandpa would take right guard baths and walk around trying to buy more stuff for cheap.  He will always be remembered and never forgotten.   He walks with my girl now!

Then I headed to Mikaylah's spot.  The cemetery was full and lots of people were sitting on the ground and I wondered what they were talking about maybe memories, regrets, wishes, some were drinking soda, some crying, some alone, some putting flowers.  I wonder why we can't do that.  Because its to SAD.  I wonder if we will ever be able to do that.  Death isn't something I have ever wanted to talk about or deal with, but with Mikaylah I hope someday we can just remember her and smile and laugh! 

For now I am just happy we made it through Father's Day and that I saw my precious son being normal and happy!  He even talked to his dad for about 40 minutes on the phone.  That was a miracle since they basically have no contact.  All in all I am so happy I was able to spend time with my dad and show him how much I love and appreciate him.  We were living life to the fullest!

A Video Update.

It's a 10 minute update!  Click on the following link to hear the video! 



http://youtu.be/xHRvXWSmSWg

This is beautiful...

A letter from a son to his mother?
She jumped up as soon as she saw the surgeon come out of the operating room. She said:
'How is my little boy ? Is he going to be all right ? When can I see him ?'

The surgeon said, 'I'm sorry. We did all we could, but your boy didn't make it.'

Sally said, 'Why do little children get cancer ? Doesn't God care any more
? Where were you, God, when my son needed you ?'

The surgeon asked, 'Would you like some time alone with your son ? One of the nurses will be out in a few minutes, before he's transported to the university.'

Sally asked the nurse to stay with her while she said good bye to son. She ran her fingers lovingly through his thick red curly hair. 'Would you like a lock of his hair ?' the nurse asked.

Sally nodded yes. The nurse cut a lock of the boy's hair, put it in a plastic bag and handed it to Sally.

The mother said, 'It was Jimmy's idea to donate his body to the University for Study. He said it might help somebody else. 'I said no at first, but Jimmy said, 'Mom, I won't be using it after I die. Maybe it will help some other little boy spend one more day with his Mom.' She went on, 'My Jimmy had a heart of gold. Always thinking of someone else. Always wanting to
help others if he could.'

Sally walked out of Children's Mercy Hospital for the last time, after spending most of the last six months there. She put the bag with Jimmy's belongings on the seat beside her in the car.

The drive home was difficult. It was even harder to enter the empty house. She carried Jimmy's belongings, and the plastic bag with the lock of his hair to her son's room.

She started placing the model cars and other personal things back in his room exactly where he had always kept them. She laid down across his bed and, hugging his pillow, cried herself to sleep.

It was around midnight when Sally awoke. Laying beside her on the bed was a folded letter. The letter said :

'Dear Mom, I know
you're going to miss me; but don't think that I will ever forget you, or stop loving you, just 'cause I'm not around to say 'I Love You'. I will always love you, Mom, even more with each day. Someday we will see each other again. Until then, if you want to adopt a little boy so you won't be so lonely, that's okay with me. He can have my room and old stuff to play with. But, if you decide to get a girl instead, she probably wouldn't like the same things us boys do. You'll have to buy her dolls and stuff girls like, you know. Don't be sad thinking about me. This really is a neat place. Grandma and Grandpa met me as soon as I got here and showed me around some, but it will take a long time to see everything. The angels are so cool. I love to watch them fly. And, you know what? Jesus doesn't look like any of his pictures. Yet, when I saw Him, I knew it was Him.
Jesus himself took me to see GOD ! And guess what, Mom ? I got to sit on God's knee and talk to Him, like I was somebody important. That's when I told Him that I wanted to write you a letter, to tell you good bye and everything. But I already knew that wasn't allowed. Well, you know what Mom ? God handed me some paper and His own personal pen to write you this letter. I think Gabriel is the name of the angel who is going to drop this letter off to you. God said for me to give you the answer to one of the questions you asked Him 'Where was He when I needed him ?' 'God said He was in the same place with me, as when His son Jesus was on the cross. He was right there, as He always is with all His children. Oh, by the way, Mom, no one else can see what I've written except you. To everyone else this is just a blank piece of paper. Isn't that cool ? I have to give God His pen
back now He needs it to write some more names in the Book of Life. Tonight I get to sit at the table with Jesus for supper. I'm sure the food will be great.

Oh, I almost forgot to tell you. I don't hurt anymore. The cancer is all gone. I'm glad because I couldn't stand that pain anymore and God couldn't stand to see me hurt so much, either. That's when He sent The Angel of Mercy to come get me. The Angel said I was a Special Delivery ! How about that ?

My favorite part is at the end, "God couldn't stand to see me hurt so much either.  That's when He sent The Angel of Mercy to come get me."  I choose to believe that's what happened with Mikaylah, she couldn't stand the pain and God couldn't either.  The Angel of Mercy took Mikaylah to that happy place where she has no more pain or suffering.  It hurts us, but I have to keep in focus that she is no longer hurting and no matter how much I miss her and wish I had had her longer she is in a perfect place now where she is happy ALL the time.  We can't even imagine a place like that.  Some have said to me, "God needed her or it's all God's will."  I don't believe that... I believe we live in a world with imperfection, with sin and sickness... God did not will for Mikaylah to be sick and die.  His plan was for her to live a full life with lots of opportunity for joy and happiness on earth, but sickness took Mikaylah.  Now she gets to have happiness for all eternity and we are promised of seeing her again when we get to eternity.

Summer

I think this is going to be a long summer...  I need something to keep me busy and its not cleaning.  I hate cleaning my house.  I hate cooking, grocery shopping, and anything that says domestic engineer.  I'm through with all that!  Hahahahahaha!  Actually I can never be done with all that stuff because I can't afford a house keeper, lawn keeper, or a cook!  Reality!  Its very hard being at home.  School and friends have kept me from going absolutely crazy, so now what do I do to keep from going crazy? 

Last night I couldn't sleep and Chris couldn't sleep either, we were passing each other in the hall at 3:00 am.  I wonder why we can't sleep.  My head feels like its going to explode.  I think of her every second.  I know there are so many things I can think of about life.  Chris, my parents, family, friends, school, work, internship, projects, but she consumes my thoughts, feelings, and emotions.  Last night I even wrote to the nurse at Spina Bifida Clinic that followed us from the day Mikaylah was born.  She is a great friend and came into the hospital shortly after Mikaylah passed away.  After Mikaylah died I did not go back into the room and now I wish I had because I wonder if she looked peaceful, I just wish I had taken that last opportunity to hug and love her.  Then I also asked her how the doctors and nurses were when she went in.  Did they agree with the decision to stop maintaining life?  It kills me everyday to think about it.  Did I make the right decision?  Would she have recovered if we would have fought a little harder?  All those questions consume me.  I received the following email this morning,

 "Mikayla did look very peaceful and it is totally understandable that you did not go back in her room.  Most importantly you were with her when she passed just as you were always with her thru the hard times as well as the wonderful times.  I can tell you that everyone supported your decision and commented on how you handled such a tragic situation with such dignity and love for Mikayla."

I really wish things had turned out differently.  I hate that she will not graduate from Jr. High next week.  I hate that we will not be sleeping in this summer.  I hate that she will not be taking any road trips with me.  I hate that I don't hear her laugh or scream or text or talk.  I miss her and this summer seems unbearable already.  

How do we go from...

Just months old. Look at the life. When Mikaylah was born and they said she would be retarded and never walk. We told the doctors, "who are you to say that her life is not worth as much as a "normal" life." Mikaylah was full of life and full of inspiration. I am so glad we didn't look at the glass half empty.

 To this...

As I watched you take your last breath you left this world and entered another one. 

On this earth this is all we have of your physical being...

My heart aches for you and always will.  I will choose to celebrate the time between your birth and death, but it isn't easy because I am caught in the missing you more than anything stage! 

Missing Mikaylah

I awake each morning to start a new day
But the pain of losing you never goes away.
I go about the things I have to do
And as the hours pass I think again of you.
I want to just hear your voice, your giggle, and even your yelling
Then I remember that I have no choice
For you are not there and now my heart cries
Just to see you again to tell you goodbye
To say Mikaylah I love you and I always will
The day that you left I just didn't know
And now all my memories of you are so dear
But gosh, how I miss you and wish you were here.
It’s so hard to tell you goodbye.
Someday I know all will be well
And I'll see you again with stories to tell
Of how you were missed
And how good it is to finally be home.
Until then my memories of you I'll keep near
And I'll pass them on to those who are dear.
I miss you my daughter. My forever 14 girlie!

If you haven't seen the balloon release you can watch the following video. It was a very touching time of remembering Mikaylah.

http://www.youtube.com/watch?v=SvucLiRxnbc

The Sun Will Come Out Tomorrow!

As I drove to my job in Merced today every song made me cry.  I was like, "Tammy pull it together.  You have no reason to cry right now."  By the time I got inside I had pulled on my mask and had a smile.  When people asked how I was, I said, "Good."  I would never say, "Bad I cried all the way here."  They could probably tell I had been crying. 

Anyway, on the way home I was thinking about when I first started working at the Arts Council and about 2010 when Mikaylah went to work with me, when school was out for the summer.  She would go with me and just hang out and talk to anyone who would listen.  People loved having her there.  She spent most of her time on the phone texting.  Some time on my computer.  Then in the afternoon she would head down the street to Playhouse for a summer program of acting!  She worked so hard that summer, wheeling herself down there keeping up with everyone!  She wanted so much to just be like everyone else and to be apart of the group.  At the end of the weeks they put on a play!  She was proud and I was so proud of her.  It was fun to see her participate in a extra curricular activity. 

Anyway... back to the way home.  I remember last year as I made that drive time after time.  It always seemed beautiful.  My outlook on life was so different.  Every where I drive now things seem so dark.  That is not because its dark outside, its because its dark in my head and in my heart.  I began to ask myself... "Will the sun ever shine again?" And the song that came to mind was... (listen for yourself.)



http://youtu.be/qocqXSuFveg







Twenty five years ago in Springtown Texas I performed this song, crazy I know!  At that time I had no idea I would be here 25 years later and I wonder where I will be 25 years from now.  Time will only tell.  I know the sun has to come out sometime!

I think most of you know I am in the Master of Social Work program at California State University Stanislaus.  This semester has been kinda crazy.  Mikaylah passed away just 5 days after our Christmas break started and I didn't know if I would be ready to return when the semester started, but I did and I'm glad to have a support system.  I had a great support from friends I had met in school.  You know I was surprised to have the kind of response I did from classmates.  Even 3 of my friends came to Mikaylah's service even though they had never met her.  I feel so very blessed to have so many supportive friends and family.  For the first few months, Mandy, Angie, and Janice contacted me on an almost daily basis.  Without all the support I think I would have gone crazy.  ANYWAY...

For my thesis I was going to study and do research on the effects a disabled sibling has on their brother or sister, well after Mikaylah's death it just didn't seem to catch my interest as much.  So talking with others and doing some research I have decided to do the stages of grief and the way a parent who has lost a child moves through them.  So I have been reading, reading, and reading some more about those 5 stages of grief.  In the beginning I thought a parent who lost a child would bounce back and forth between the stages feeling denial, anger, guilt, depression,  and acceptance at any given time. 

Well to tell you the truth I am mostly in the first stage still.  Denial... everyday I wake up thinking how can this be, is she really gone?  And every night I go to bed saying, I can not believe she is not here.  Yes at times I feel all the other stages, but more than anything I cannot think of living life without Mikaylah.  I can't believe there will never be any updated pictures, or giggly girlfriends and parties.  No boyfriends, texts, phone calls.  No birthdays, holidays, yelling, arguing, hugs, kisses, cloths to buy, no more begging me to take her somewhere, no more dropping her at the movies with friends, no more mother's day cards from her, no more anything.  That is to much for my mind to comprehend.  So I stay in denial and keep asking myself how this can be?  How did this happen? 

One of the newest things I think of is Chris.  He is an only child now.  He has to put up with me all the time.  He is the only one that can take care of me when I am old.  He holds all the responsibility of bringing me grand kids and expanding our immediate family.  What a responsibility.  Its kinda funny because I always wanted a large family with lots of kids, because when I was growing up I always wanted more siblings.  Now my brother has plenty for all with 4 boys and four grandsons and 2 of his sons are not married yet!  Almost twenty years ago I decided to get married and start the life I thought was a good plan.  Marriage, being a wife and a few years later starting a family.  I prayed, attended church, made friends, home schooled, and truly wanted to be the perfect wife and family.  Twenty years later, I am divorced and have one child to show for the last 21 years of life.  I am by no means saying Chris is not worth it because he truly is special, I would never change having him and I am so proud of him.  Its just like, where do I go from here.  Its almost like a clean slate, but I'm not happy with it.  It was not my choice to have a clean slate! 

I have heard alot of people say they would like to just start fresh, start new, but guess what?  Its not that easy.  Starting over is hard.  Mostly because you bring baggage.  I have the memories, the thoughts, the wanting and yearning for my old life.  I hope I will learn this new way of life.  I hope I will live this new way of life the way Mikaylah lived her life.  To live it to the fullest, for now I can't.  I waste time, I cry, I am not contend, I am not thankful, and I am always asking myself how this can be my life, how can it be.  The one thing I do have is HOPE.  I have hope that things will not always be this way, that my thoughts and feelings will change as time moves on.  Thanks for listening and for all the encouragement you all always give me.  I so appreciate it!  Thank you for joining me on my journey.  Love to all!