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!

A word to encourage YOU!

If you need encouragement today please listen to this 3 minute video log!
http://youtu.be/UzU4LXPbTDA

100%

THE CLIMB

About a month ago I woke up singing, The Climb. http://youtu.be/jpTYG_Sqqdg Not literally singing, but singing the song in my head. More like Mikaylah singing the song. Like I couldn't wait to listen to it and kept thinking about writing a blog about it. Tonight I was talking with Amanda and she mentioned The Climb and she can't listen to it without crying and thinking of Mikaylah. So I thought, "There must be a message in that song." So here I am.  I keep asking myself why did Mikaylah love it so much for such a long time. She would listen to it over and over. I keep thinking there has to be a message in it.

I can almost see it.
That dream I'm dreaming, but
There's a voice inside my head saying
You'll never reach it
Every step I'm takin'
Every move I make
Feels lost with no direction,
My faith is shakin'
But I gotta keep tryin'
Gotta keep my head held high

Mikaylah had dreams... dreams of perfect health... dreams of graduating... dreams of marriage... dreams of kids... but so many times she would hear negative thoughts in her head that she couldn't make it, but the song says... "But I gotta keep tryin' Gotta keep my head held high." I can just see her listening to the words saying, "Yes I can make it, I can do it, just keep moving forward."

Guess what? She didn't know it, but by loving this song she ministered to me. I'm saying, "Every move I make, Feels lost with no direction, My faith is shakin'." But guess what? "I gotta keep tryin'." Maybe you are going through something that is shaking your faith and you feel lost, maybe it’s a broken relationship, a health problem, grief, financial problems, whatever it is, you gotta keep tryin' Gotta keep your head held high.

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down, but
No I'm not breaking

Mikaylah was not breaking.  She always wore a smile and when we were out she always wanted to do things herself.  Her lungs and breathing always wanted to knock her down, but she would not break.  And guess what I’m not going to break.  As sadness overwhelms me I will be strong.  I can learn from her life. 

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Sometimes I'm gonna have to lose

She did have to lose.  She lost the battle with her physical body.  I didn’t think it would be such a short battle.  14 years seems not long enough, but when it’s been your battle that is a long time.  The last year was a struggle, physically and mentally.  We all have to lose sometime.  In life losing her was me losing.  A big struggle for me and I’m sure this is not going to be the last loss I endure.  It will be the most painful and the most life changing, but it won’t be the last.  When mountains rise up in front of us there are only two things to do: climb it and go over or remain on the ground and look at it.  It feels safe to just stay on the ground, but in the climb you grow.  It’s painful to grow, to walk uphill, when walking up hill my legs get tired, my lungs hurt as I try to breath, some places that are rocky my feet may slip, but when we reach the top the view is beautiful and you feel tall like you are on top of the world. You can see the path that you walked and you can see the path down.  Things become clearer.  Well Mikaylah can see now!  She is with Jesus; she is on top of the mountain.  I can’t see the whole picture.  I’m just putting one foot in front of the other, climbing uphill!

Ain't about how fast I get there
Ain't about what's waitin' on the other side
It's the climb

The climb was good.  Even last year along… family times, beach, Reno, Virginia, snowboarding, baptism.  So many things, she enjoyed.  So my life, all of our lives are about the climb.  What we do in life.

Keep on movin'
Keep climbin'
Keep faith baby
It's all about, it's all about
The climb
Keep the faith, keep your faith, woah

It’s like she is telling me not to give up, not to give in.  She knew I needed a message from her.  Because at times I am just so sad and when I think of her NEVER being here I have to just tell myself to think of something else, but I don’t want her death to be in vain.  I want to keep her memory alive by doing something in her honor.  Something that will keep going year after year.  I’m not sure what that will be, but I’m not going to stop thinking about it.  My life will count and she will never be forgotten.  Let’s all make a commitment to being the very best we can be, that in itself will keep Mikaylah’s memory alive.  She touched so many lives, how many can we touch?  If we were to die today, what would people say?  Would they remember us in a week, in a month, in a year?  I think Mikaylah touched lives in such a way that she will be remembered for life.

Road Trip

From Pismo Beach we moved on to Hemet to drop Chris off at his girlfriends house.  I got a room at the Best Western and Chris took the car so he and his girlfriend could go out.  It felt really lonely.  I couldn't help but think about the last time we went to Hemet.  September 2010, Janice went with Chris, Mikaylah, and Me.  We were going to meet Monique, Chris's girlfriend and family.  Mikaylah was so excited to meet her and after we met her we stayed in a hotel and we had a slumber party!  Food, candy, jumping on beds, giggling and telling secrets.  An all around fun adventure.  We also went to visit our cousins in Brea.  Mikaylah loved spending time with family.  She loved joking and being fiesty, she had a spark and spunk that would bring life.

Wednesday morning I went with Chris and Monique to Marie Calendars and we had a good time visiting.  I know its wrong, but I think of Mikaylah all the time.  When I was sitting there enjoying breakfast I was thinking about how Mikaylah would have loved sitting there talking to Monique and teasing Chris.  It's not that I don't enjoy myself it's just that I miss her being there and I know she would have really enjoyed it.  After breakfast I left for Yuma.  I was really excited about coming to Yuma, but at the same time I was sad because Mikaylah always wanted to come visit Aunt Pam and Uncle Sonny in Yuma, but I never made the time.  She wanted to visit Joey and Allison and the kids.  She talked about it and it just never worked out.  Why didn't I make the time?  So on my way here I cried, prayed, and listened to Mikaylah's music.  I could feel her in every song and I know she picked each and every song on her ipod because it meant something to her.  Towards the end of the trip "I Will Rise" came on.  http://youtu.be/IifTXVqpV-E "I will rise when He calls my name.  No more sorrow, no more pain."   She is at peace.  And she isn't upset that I didn't bring her to Yuma.  She's in a place where she is never let down or in pain.  At times I just feel alone and so sad because I am in pain and feel let down.

                                          
                                                       

Yuma is great!  I love the weather so far and the company is the best.  I am being treated like a queen and eating enough food for a banquet!