LIFE UPDATE... YOUR HELP IS NEEDED, LOL!!!

A brand new life is sometimes so hard to live.  I look back to 22 months ago and what my life consisted of and I can't believe how much one can change in that length of time.  How does it happen?  I look back and sometimes wonder how did I get here.  Life goes so quickly.  I tell myself its time to live.  Time to live life for myself.  Time to get out there and build friendships, find that special someone, a companion.  Life is not going to wait for me, its going to keep moving forward and I don't want to be 90 and look back and say... I wish, I should have... I want to LIVE LIFE TO THE FULLEST!  

MIKAYLAH is not wishing she were living life to the fullest.  She is living the fullest in the presence of God.  I'm very glad she does not have grief or the sense of loss, she is completely whole, completely healed!  I am thankful for that.  She wants me to be happy, she wanted that for me when she was here.

As a single mom I never really thought of getting married again.  I had to many things to keep me busy, to many responsibilities to Chris and Mikaylah and I didn't want to make a mistake and marry the wrong person.  Now I desire to have a someone to build a life with.  So everyone within ear distance be on the outlook.  You all know me and I need help finding that special someone, so if you know anyone special send them my way!!!! LOL!!!!  

This weeks work was so difficult and stressful.  Taking a little 2 day old baby from its parents at the hospital is heartbreaking.  Walking out of the hospital with such precious cargo, putting that 6 pound baby in the infant seat, and driving away was almost more responsibility then I could handle.  I kept thinking about this little baby in the back seat.  Took me back to bringing my little ones home from the hospital.  I sat in the back seat with them making sure they were okay, making sure they were safe and breathing.  This little baby sat alone in the back seat with nobody fussing over him.  HEARTBREAKING!  So many little children out there with parents who do love them, but have so many bad choices in life they cannot take care of their children.  Looking into the eyes of a parent and saying there is absolutely nothing you can do at this moment to stop this is the really bad part of my job.  

The first year Mikaylah passed away I had this tightening in my throat, I saw it as the representation of all the grief and missing and everyday I had to push it down; it wanted to come up, but I had to do all the life things so I had to push it down.  The tightening returned this week.  I had to push all the emotions down.  Stoically standing in front of the parents confronting issues, taking the baby, transporting the baby, and then writing a court document telling all the reasons why this precious baby had to be placed in protective custody.  Such a difficult job.  I now understand why there is a huge burnout amoung social workers.  

So this is the new life!  New job, new love, new life!  I'm going to love this life.  Its not anything like my previous life, its a whole NEW one.  Thanks for listening and don't forget to send those special guys my way!  HEEHEE!!!

                     

I miss Spina Bifida

I know, a weird thing to say.  How can a person miss what is not suppose to be?  Or what is considered by society to be a flaw, a mistake, a desease, an illness; how can one miss that?  

I miss spina bifida because:

It brought Mikaylah to me.

It brought a loving, spunky, full of life daughter into my life.

It caused people to view Mikaylah as strong.

It helped others see that if Mikaylah with all her struggles could be happy and continue living life then they could too.

It gave me purpose.

It gave me something to participate in: support groups, research, friends.

It gave me insight into emergency rooms.

It let me meet social workers, doctors, hundreds of awesome nurses.  (Some we worked with since Mikaylah's birth.)

It gave my son compassion for disabilities and different abled people.

It gave me the experience to educate others on how to treat those with disabilities and to teach that to children so they could know.

It gave me connections to doctors to have conferences for the local community.

It allowed me to participate in my daughters life in ways most parents do not get to.  

It allowed me to spend time with Mikaylah and have her as not only a daughter, but a companion.

Hospital stays brought us closer as we spent time holding hands, praying, and talking about secrets.

It allowed me to meet people I never would have met.

It allowed me to see how others feel when they are different than everyone else.  (Minorities)

It allowed me to have a voice.   (When others would ask what was wrong with her, I would educate them, "There's nothing wrong with her, whats wrong with you?")

It helped me slow down.

It helped me to appreciate the small stuff.

It taught me to not take things for granted to celebrate every milestone.

It taught me that potty training is not the most important thing.

That walking isn't everything.

It taught me that getting somewhere on-time isn't always posible, plan for accidents!

Always take an extra set of cloths.

Eating isn't easy for everyone.

It taught me that sleep and rest is important for a body.

It taught me that pain is good: it gives you signs that something is wrong.

It taught me to depend on others and to ask for help.

It taught me that God doesn't always have healing in mind.  That sometimes he creates a baby in a mother's womb and they are perfect in His sight, but not in this worlds sight.  He creates that child for a reason, for a purpose, for the reasons listed above.  As much as our church wanted Mikaylah healed, as much as they prayed, she wasn't healed.  Why do you think this was?  Some might say because we didn't have enough faith, others say we needed to press in more... why can't we just believe that Mikaylah was right where God wanted her.  That he had a specific plan for her and it included Spina Bifida.  

This month is Spina Bifida Awareness Month...  I'm not going to lie Spina Bifida was the best and worst thing that has happened to me thus far.  It gave me Mikaylah and it took her away.  

The day she was born was the first time I had heard the word Spina Bifida and I heard it after the nurse delivered her.  The nurse was screaming, the nurse did not know what to do.  I was confused and scared and wanted to know what was wrong.  Mikaylah was beautiful.  That began our journey with Spina Bifida and we studied and accepted her with open arms and she gave us everything we needed.  She was perfect.  Even with all her challenges and hospital stays she was perfect.  It wasn't till 2010 that we decided after several years of putting it off to have a surgery that could help Mikaylah become independent with her bladder and bowel maintanence.  That surgery seemed to bring the independence she needed, but with it came complications that eventually took her life.  Her paralysis did not allow her to feel the pain of infection that took over her body.  

What I take from this... all the above.  Accept people.  Don't judge the will of God for others lives.  Don't tell others what God wants for them, thats not your job.  Love people, learn lessons from others.  Live each day as if it were your last.  Be thankful.  Be grateful even when you feel there is nothing to be grateful for.  Look around you and embrace differences.  Everyone does not need to be the same.  Normal is in the eyes of the beholder.  Talk to people.  Show interest.  Be honest with yourself.  Embrace the journey.  Love your family, without judgement.  Love your friends and support them.

 

THE VERY NAME... MOM

                      

         

It's amazing how it happens.  A child grows within and the moment that child enters the world you are forever a "Mom".  You have a new name and a new role.  Something you never again lose.  Not like a job that can be taken away.  Once a mother always a mother.  Even if your child dies at birth or shortly after you are still a mom.  

When we think of our mom some of us have thoughts of extreme connection and heartfelt love and others have anger or hurt.  Even if anger and hurt are the feelings you have that anger is because we all know that a mom is suppose to love her children, is suppose to protect and care for her children with no regard for herself.  Mom's take care of the needs of her children from birth.  We feed them either from a bottle or breast but we are the reason they live.  Without a mothers care to feed, diaper, and hold, babies would not survive.  Mother's spend sleepless nights and when we gaze into the eyes of our baby we can't seem to stop looking.  The connection we feel and the overwhelming feelings of love take over our hearts at times.  Mother's can literally spend hours watching our babies sleep.  A baby changes your life.  Babies don't always come at the most opportune times... sometimes your are to young, to old, not married, in the middle of a job change, poor, but none the less you become a mom.  Even those who give their babies in adoption are still forever changed, they are forever a mom.

                                   

As our children grow we can't wait till they say MOM.  We coach them hoping they will say our name before they say anyone else's.  We cannot wait to hear the words of our name come from our children.  And when they finally say our name we smile and it feels so natural!  The older our children get the more we hear our name being called.  I think it was somewhere around age 5 my children would call my name every few minutes!  There was actually a time I said, I'm going to change my name!  But of course I did not!  

        

Despite everything else we do working, cleaning, laundry, cooking, family get togethers, birthdays... we know that being a mother takes precidents.  If our child gets sick we are there to make sure they get better, if the school calls we go take care of it, if our child is crying we comfort, if our child needs cloths or supplies we take them.  If we realize what we have; we talk to our children, we spend time playing games and watching movies, going to sports events, musicals, and experiencing life together.  

As we head into teen years our children do not say our name quite as much... they say it but not always in a nice way!!!  They start to not need us as much.  It's hard as a mom because we have put our absolute everything into loving and caring for our children.  It's during these years we question if we did the right thing when they were little and growing.  Its amazing though that no matter what our child says or does in teenage years we love them.  It's a neverending, neverstopping love of a mother.  

                                         

I'm at the point in my Mom journey that I really miss hearing that name, "MOM."  At one point I might have heard that name 100 or more times a day, now there are some days I never hear that word.  The other day I was sitting on the patio and Chris yelled out the door, "Bye Mom, I love you."  My heart was overwhelmed.  Hearing my 19 year old say my name makes my heart feel complete, but it also brought a sadness that as my child gets older I will hear that word less and less, because sooner or later he will move out and I won't talk to him everyday!  For me it also brought the reminder that I will never again hear my Mikaylah say my name.  I have to say I miss hearing her say, "mom!"  I grieve for every card, letter, picture, hug that I would get for the next 40 years!  I will never have another letter that reads, "Mom I love you, Mikaylah."  So I cherish the ones I have!  

The natural order is the child losing the Mom.  That is not easy either.  I love calling my mom... talking to her.  I know she is the one who prays for me and who to this day would still give her life for me.  I have seen her struggle with losing her mom.  I am sure she misses using that name, "MOM."  The name mom is reserved for moms or people in our lives who act as a mom.  So when our mom is gone from this world we never again use that name.  

Moral of this story...

If you have small children, relish that they say your name often.  Remember that time passes quick and these days cannot be relived.  Time waits for no one and keeps marching on.  The next time they call your name, "Mom."  Recognize the feeling you have when you hear that name!

If you have teenagers, remember they are not going to be this age forever and that they love you, they are just trying to spread their wings a little.  When these years pass, the next step is to their own life, a life that you will be part of but not as much.

If you have adult children, call often and love them for the life they lead even if you don't agree.

If you have a mom love them, call them, write them, say their name often and let them know you appreciate them.  When your mom is gone from this world you will not get that opportunity again.  

Life is ever so short and loss is evident and will happen to each of us we do not want to look back with regret, we want to look back and say I took every opportunity to let those around me know I love them whether Mom or Child!

TO MY MIKAYLAH:

      

I THINK SHE KNEW THIS IS HOW I FELT.  I DON'T REGRET, BUT I DO WISH I HAD SPENT MORE TIME MAKING SURE SHE KNEW I LOVED HER.  AND I SPENT A LOT OF TIME.  MAYBE WE WILL ALWAYS WISH WE HAD SPENT MORE TIME TELLING OUR LOVED ONES.  EVEN THOUGH I DO NOT GET TO SEE HER GROW INTO WOMANHOOD, I KNOW THAT SHE HAS GROWN INTO A COMPLETE, WHOLE, AND PERFECT SPIRITUAL BEING IN HEAVEN.  I LOVE YOU MIKAYLAH!

   

Triggers

Today I had CPR/ First Aid at work.  You would think just another boring class.  I've taken the class several times, but it was time to renew!  

Shock... just that word followed by all the signs of shock.  Mikaylah had every symptom of shock on December 17, 2011... vomiting, ash colored skin, delusion, extreme thirst, discomfort/pain, low blood pressure, high heart rate, but I didn't see these signs.  Chris says I didn't want to see, he says he knew she was really really sick.  I didn't.  

Back to trigger, sitting in class talking about shock, my brain shuts down, I tell myself, "No don't think about her, don't think about the pain and discomfort, don't think about her ambulance ride to UCSF, don't think about the way she asked for water/ apple juice over and over, don't think about them taking her to surgery, don't think about the news of a bladder that had ruptured and the infection that raged within her, don't think about the 106 fever, don't think about that last breath."  I have to finish class, I have to continue without a tear.  

How do we continue without a tear?  How do we walk through life knowing that life can be snatched at anytime?  How do we live life to the very fullest when there are so many thoughts that bring sadness and tears?  I'm not sure... all I know is I do.  I may not be living life to the fullest, but I am moving toward that, I am walking forward, but those triggers are HELL!  

This is how I look after a day of triggers!  Just being real here!  LOL!  So glad to have all of you!

Transition

It's inevitable that I must move on.  Everyday is one step closer to leaving this world and I don't want to get to the end with any regrets.  I guess the real question is, how do I move on with Mikaylah in my heart instead of in my world.  Everyday I get up and put one foot in front of the other and walk through this world.  So I would have to say I am moving on, but am I moving on in the best possible way I can?  Am I making a mark on this world that will never be erased when I am gone from here?  I want to...  I want to make a difference in the lives of those around me.  Is wanting to enough?  

I think about helping people who are walking through the grief process.  I could be there for people, listening and comforting, but I haven't gotten to the point where I can even say, "My daughter is forever 14."  Without a lump expanding in my throat and tears coming to my eyes.  I can mostly hold the tears back now and regain composure fast, but it takes all my strength and makes me want to run and escape from the present.  I wish I was one of those grievers who could say Mikaylah appears to me in the form of a butterfly and I see her in the ocean, and she visits me in my dreams, but I can't.  The pain of her lose is so great.

I'm 43 years old and going through an identity crisis.  My two worlds have to come together.  How do I make these two chapters fit together.  Whats the transition between plots?  My life now has to include my past, my last chapter.  How do I make it fit with the new life, the new chapter?  Will it just come together or do I need to seek it?

"The meaning of our lives is revealed through experiences that at first seem at odds with each other- moments we wish would never end and moments we wish had never begun.  Those timeless experiences we want to last forever whisper to us that they were meant to.  There is more to these days than pictures tucked away in photo albums, fading as the memory fades from view.  We use a statement to try to console ourselves with what we think is the irrecoverable loss:  "All good things come to an end."  I hate that phrase.  It's a lie.  Even our troubles and our heartbreaks tell us something about our true destiny."  The Journey of Desire- John Eldredge

So I know in my heart that my heartbreaks will be used to bring me to my true destiny.  I can't believe that the life I once knew was just so I could spend my time wishing I could get it back.  So I move forward in search of the new chapter and during this transition chapter, I choice to jump in.  

Feelings like this are NORMAL!

Why can't it be easy?  Why can't we live in a rose garden?  Does this really all go back to Adam and Eve and they curse God passed to us because of their disobedience?

Looking for someone to blame... for my hurting heart!  I guess I'll blame them.  They are dead and gone and I can blame them without feeling bad about it!  LOL!

How many years do I get to miss you like this?  Will it be the number of years you were on this earth?  Is 14 the magic number?  Will you still be such a painful missing 14 years from now?  Somedays I just can't believe you are gone FOREVER.  I simple miss you.  Everything about you.  Wish you were here on this Labor Day weekend.

Written on 8/17/13- While on vacation in Las Vegas and Yuma

It's been a long while since I've been on.  Not sure why other than the fact I've just been moving forward, putting one foot in front of the other.  This summer has been a challenge.  After graduating in May I began interviewing for jobs and county jobs seem to take forever to call you.  In the waiting time I began to doubt myself.  I truly began to think things like: I'm not smart, I'm not pretty, and how am I ever going to find a job.  As the days turned into weeks and the weeks into months I became more depressed and antsy.  Then I got the calls and picked the job and start on August 26th.  So I went on vacation...

Missing Mikaylah.  She is so very missed.  Sometimes I just wish I could wake up and she would be here.   I loved my vacation... 19 days... each day I thought of how much Mikaylah would have loved spending time with everyone.  She loved her cousins and Aunt Pam and Uncle Sonny.  I also realized that there would have been no way we would have gone for 19 days if she had gone.  She loved visiting people but it was challenging for Mikaylah to be away from home for to many nights.  She tired easily and because of her needs traveling wasn't always easy.  It was challenging.  There were times on this trip that I thought, "Wow, I have absolutely no responsibilities."  It feels weird to be kid free and then after being a caretaker for 14 years it feels weird to not have that responsibility.  There were times while shopping I would stop and look around like where are my kids, but then I would realize they were not there.

I ask myself how can you have a good time while so deeply hurting, but thats exactly what happened.  This was probably one of my favorite trips and at the same time my heart hurt so deeply at times it was hard to breath.  I guess on one hand I feel guilty that I am having a good time without her, on the other hand I know she would have enjoyed it, and if I had a third hand I realize she is totally fulfilled where she is and is having the time of her life not wishing to come back to me.

The absolute best time of my life was raising Chris and Mikaylah.  I love being a mom.  I loved every labor pain, every milestone, every hug, kiss, teaching opportunity.  I loved vacations, day trips, movie dates, family times.  Even in the bad times I enjoyed that fact that I had my children no matter what and the love we have never goes away.  I know I am still a mom and I know that Chris still needs me, but its different.  Changing.  Chris has grown up and he only gets my input when he wants it!  I have to say he is the best thing in my life and I worry constantly that he will be taken from me.  I hope I never have to endure losing him.  He is my saving grace... he makes me laugh and reminds me that I still have a piece of the favorite things in my life... my children.

Some say time heals the pain of losing a child.  I have to say they must have never lost a child.  The more time that goes by the more I miss her.  The more time that goes by the more I realize I will never see her again in this life.  The more time that goes by the more deeply the pain of losing her is. I wonder what she would enjoy... would it still be Justin Bieber, would she have a boyfriend, would she be doing well in school, would she be looking forward to her sophomore year or wishing summer was not over.  Would I be dropping her at the theater to meet up with friends today and taking her to church in the morning.  Would I be listening to her fight with her brother non-stop?  Would I be telling her to put her phone down during dinner?  I know I would be giving her a hug and kiss everyday and telling her how much I love her, because that is what I did everyday of her life.

There are many things in life you can change, many things you can do over.  If you get a bad grade you can take the class again.  If you yell at someone close to you, you can apologize.  If you want to reach a goal you can.  But death is the end.  There is nothing else that can be done in this world when you are gone.  On December 21, 2011 at 5:04 am Mikaylah could no longer do anything in this world and I can no longer apologize, talk, hug, kiss, or touch her.  So remember to never take for granted the minutes you have with your loved ones.  I am trying to remember this as it is a reality everyday.