Mack- The Extraordinary Dog

As I write this my beloved Mack is sleeping.  I brought him home yesterday and he is quickly slipping away from this earth.  He has stopped eating, won't take his meds and has little energy.  I know you've seen my Facebook posts about him in the recent days, so I wanted to share his story with you because he has a lot to do with Marissa.

Before Steve and I got married, we had said that we didn't want to have children.  In 2001, (after circumstances I can't mention), I discovered that I had the "instinct" and wanted to have a child.  After months of testing and years of trying we basically had given up on the option of having a child.  We had dogs and that was all we needed.  During this time, we had lost Zeus (Steve's German Shepherd) and Midnight (black Lab) had went to live with a family that had a farm for him to run around.  We even got a Chihuahua (worst dog ever).  They really were just dogs to me.  I had a Golden Retriever, Amber, that died while I was in college and I swore then that I would never get attached to another dog, like I did her.   I did pretty good until Mack.

In March 2004, one of my good friends notified me that her Shepherd, Breanna "Bre",  was having babies.  Steve and I discussed it and we decided that we would go ahead and get one of them when they born.  I was there after Bre gave birth on April 1, 2004.  I picked out Mack from day one.  Each day we would go to see the puppies and each time my Mack would come and see me.  Even though I had him picked out it was really up to Steve as Mack was a replacement for Zeus.  The day we went and to see which one, here came Mack out of the litter and swiped at Steve's hand.  There was no question that Mack was meant to be ours or mine.  He was a mommy's boy from day one.

Mack lived in the house with us and never one time had an accident.  Shortly, after bringing him home, we discovered that I was pregnant.  Mack was with me the entire time.  He would often lay his head on my stomach as I progressed in my pregnancy.   Mack is a working dog and he clearly worked to protect his family.   He was in the house when we brought Marissa home and it was only after he decided to chew her oxygen cords that he began to reside downstairs and outside.  This really suited him fine and he continued to work just like he was meant to do.

We discovered shortly after brining Marissa home that Mack was very much in tune with her breathing issues.  He would bark like we've never heard him before she had an breathing episode.  My attendants that help with me with Marissa learned very quickly that they needed to pay attention to him as he was really able to prevent Marissa to stop breathing.  Once Marissa began to walk he would walk with her and let him hold onto his back to maneuver the back yard.  She'd fall, he'd help her up.  Its just recently that he has stopped doing this.   When times got tough for me, I'd run to him.  He became a pillar for me while I prayed or cried.  He'd always lick my tears and I knew that I could get up and go on.

We named Mack after my grandfather, George Mack Dashiell, who was one of the strongest men I know.  It just seemed fitting to name him after my grandfather even through we didn't know his personality just yet.  Mack is truly one of the most extraordinary dogs I've ever met.  He's been a service and loyal companion for over the past ten years.

Today, Marissa blurted out that "Mack is going to heaven".  He is.  Bringing him home has been a painful experience.  I am literally watching my buddy die.  I was in no way prepared for this experience.  I am for the most part and strong person, but watching Mack die is literally heart wrenching.  I will be losing my best friend and my furry child.  I know that Mack will be going to heaven (and if you have other thoughts, please keep them to yourself).  We've processed it the best way we can with Marissa and have explained to her that he will now be a dog for Ainsley, who passed away in 2011.

If you have a dog, give them an extra squeeze.  Dogs are here to teach us lessons.  Lessons of service.  Lessons of love.  Lessons of forgiveness.   Please learn the lessons that they teach us.  Never take one day for granted with them, your child or your life.  As I have learned this week, things can change instantly because we have no control over them.  Only God is in control.

I love you Mackadamion.  Now and always you will be in my heart.

Autism Awareness: Things I Want You To Know

October 25, 2010, we received the news.  My husband and I were told that Marissa has Autism.  I remember that moment as if it was yesterday.  I knew that Marissa was "different" but we had been in this battle for over two years as to whether she did have Autism or was it part of her chromosome disorder.  The words, I knew were coming but once I heard them, my heart dropped.  We had another appointment right after that and this doctor could tell I was out of sorts.  I was able to mumble out what we had just been told, and he looked at me and said, "I knew that, did you not know?".  He gave me a pat on the shoulder and said, "it will be okay".  All the way home from Charlottesville, I cried.  I prayed.  Fortunately, due to Marissa having so many other issues she had been receiving early intervention services since she was six months old.  

April is Autism Awareness Month.  Autism is growing at an alarming rate.  With the new data, Marissa is now 1 in 189 girls that has the diagnosis Autism.  1 in 68 Americans.  1 in 42 boys.  Look around you when you are out, some family near you is effected by Autism.  Are you that person that says quietly, "that kid is spoiled"; "boy, they need to give that kid a spanking"; "why can't they just leave"; "that parent needs to discipline that kid"or any other mutters you may have?  I am going to answer some of the questions that people have and hopefully provide some insight on what it is like living with Autism.  

These are things I want you to know:

1) I did not cause my daughter to have Autism.  I did not drink or do drugs during my pregnancy.  I only was sick once and was very careful about what I consumed.  I took my vitamins and had prenatal care.   My greatest sinful treat was Peanut Butter Pie from Famous Anthony's during my last trimester. Don't look at my posts or my pictures and think, what did I do- I did nothing.  

2) I cry.  I cry a lot.  I grieve.  When I see you out enjoying your times with your daughters, knowing that I can't do that with mine, my heart breaks.  I hope that you each understand that you should not take that for granted.  Marissa can't tolerate a movie theater, the mall, the grocery store, and there are only a handful of restaurants I can take her too.  I'm not saying this for you to feel bad or sorry for me. I like to see your posts and I know that you enjoy your time, but please don't take that moment for granted.  Cherish those times, there are a lot of moms that don't get them. 

3) No, I can not make her stop grinding her teeth.  She grinds because of sensory issues.   (I'm almost afraid of what she might replace it with). 

4) No, I can not make her stop making her "engine" noise.  She's actually recording every word you say right now- so be careful of what you say in her presence. 

5) No, that is not clapping because she's happy, she's clapping because it soothes her.  

6) Marissa can't express her emotions or feelings.  When she is frustrated she does not use words.  She will hit, throw, bang her head or start screaming "N-O- no".  This can happen without a moments notice.  Tonight, she was fine and the next thing I know she took a game and threw it a crossed the room and pieces went everywhere.  I've been hit, kicked, bitten, and my hair pulled.  Its a behavior that she can't control.  Medications help but they don't solve the problem.  Her brain processes information so differently then we do.  

7) Marissa is in tune with your feelings.  If your stressed or anxious, so will she be.  If your happy around her, then she will feel that and react positive (for the most part).  Don't hug her unless you ask and mindful of her personal space.  

8) Marissa is obsessive.  My house is always clean.  We do the same thing ALL the time.  If you did something once, that's the way you've always done it.  Her current obsession, "Alabama Gal" (thank you Mrs. Stevens at Yellow Branch School).  

9) I'm in reality of my situation.  I know that God has amazing plans for her.  I'm her voice.  I want you to hear me.  I want you to understand that why things we do and say may not always be conventional, I'm always going to do what is best for her and any child that has Autism.  There is nothing more that I don't understand is when a parent know that something is wrong with their child but refuses to seek help.  Get help.  Ask questions.  Be educated.  Advocating for your child can mean huge things.  Never, never, never give up.  

10) I love her with everything that is in me.  I know that she is going to be with me forever.  I give her a 110% all the time.  I make sure that she is happy, well cared for and receives the services that she needs.  I love everything about her.  I pray that God will heal her and use her for His good.  That others will see His light in her.  Marissa's situation is compounded by her chromosome disorder and her health problems.  I know that God has His hand on her.  I know that God can take her at any time.  I know that she won't be here forever.  I hope that she has touched your life.  I hope that you can say you are different because you knew her.  I know I am.  She is my hero.  My shining star.  My Autistic Princess.  

"Fight...Grieve...Hope"- The Mantra of the Special Needs Parent

As I sit here and write this, I am again baffled by the system that is put into place not only to save our state money but also to assist with those that have disabilities.  I keep finding that I am asking myself the same question, "when is enough, enough?".  Of course, I have no answer but lots of passion and ideas on how to change this broken bureaucratic system.  It is truly my mission to see change to the waiver system in the Commonwealth of Virginia.  

Every Thursday, I have the privilege of watching young to old special needs individuals play basketball.  Marissa is the youngest one of this bunch.  Each Thursday, it seems that a new caregiver or provider sits next to me and we begin to talk about the story of our kid.  Most of the individuals are at least ten to twenty years older then Marissa.  Tonight, I was sitting next to a lady who has a 28 daughter with CP.  She has been on the waiting list to get a waiver since her daughter was 14 years old.  All she wants is for her daughter to have day support.  She applies for grants to pay for the program and stated that she has had numerous case managers over the years and no consistency in her services.  She looked at me and said, "all we do is fight".   I took a minute to think about what she was saying.  How true that statement is.   We fight with the schools to get the best and appropriate services for our kids.  We fight with society to accept our children as they are.  We fight with doctors to make sure our kids get the proper medical care.  We fight with our government to get services.  We fight with our kids when they are having a rough day.  We fight just to survive in a world that no one seems to understand, but us.  We fight to keep our kids alive and our spirits alive to make it through another day.  

If you drive by my house, you may see that it looks nice from the outside.  The yard is groomed.  A UNC garden flag hangs proudly.  Flowers bloom in the spring.  You might wonder about the family who lives there.  But, once you walk through the door you will get a very different idea of what it is like to live in my home.  Where every move I make has to be structured.  Always have to make sure that we do things in the same order each time, one wrong suggestion, could end in a melt down.  There are times that all I want to do is cry because I feel like a failure of a mom.  I feel like I am the only one who understands this.  Sometimes, I even ask, "why me, Lord".  Of course, there are the good times, but unfortunately those days are few and far between.  You learn to cherish moments in a very different way then most parents.  

I was talking to a parent the other night about her three year old playing with his poop.  Not normal three year old behavior.  She is frustrated.  She feels hopeless.    Always planning, always thinking, always trying to do something new that may help her son be better then what any one thought he could be.  She is starting to see the differences now between her precious three year old son and the "regular" three year old.  I just patted her on the arm, chuckled and said, "its going to get worse".  Each milestone that we see a child go through that is age appropriate- we grieve.  Each child that we see in public and we wish our child could be like that- we grieve.  Sometimes, we mask our tears and other times they flow like a river.  

I know that God has put all of these circumstances in my way, so that I can help cultivate change.  I have the passion, the intellectual ability and knowledge of the system to make my voice heard.  I have hope that I can climb this mountain and make things better for our kids that struggle with special needs.  

So, I urge you that if you are out in public and you see a caregiver with a special needs child, make sure you say something nice to them.  Tell them they are doing a good job.  Give them a smile or a pat on the back.  It goes a long way in giving them the strength and energy to face the day.  Because in the end....we fight... we grieve, but we never lose hope.    

Blessings

Lately, every time I get in my car the song "Blessings" from Laura Story seems to be playing.  Each time I hear it, I pause to think of what is happening in my life at this moment in time.  This song brings such a moment of reflection for me.  And apparently, God must think I need it, cause I've heard it A LOT.  

Many of you know that on September 28, 2013, I took on a challenge to race with my daughter in the Virginia 4 Miler.  (For those of you that don't know- Lynchburg is known as the "Hill City" and I mean hills!) I used to run regularly until I broke my foot in January 2012.  Since then, my foot is in constant pain.  Over the past year, I have tried to run, but my leg cramps and I just end up being miserable.  I have little self-disapline.  It hurts.  I stop.  On impulse, I signed Marissa up for this race with me.  I have never pushed Marissa until race day.  There were points in the race where I thought, I was going to get sick.  At one point, I leaned over the stroller and prayed that God would stop the burn and send angels to help push me up.  He did just that.  My two friends, Scott and Shera were right with me.  They encouraged me to push and Shera had to take the bar for a short time so that I could get myself together.  At one point, the emotion rushed over me.  The reality that my daughter was "running" in a race.  Simply amazing.   We finished and we finished strong.  After the race, I praised God that He had given me the strength  to run, because there was no way I did that on my own.  Blessing.  

Several of you have been praying about Marissa's waiver that we lost last September.  On October 1, 2013, we were notified that the Attorney General of Commonwealth of Virginia had settled our case and Marissa was placed on the Developmental Disability Waiver effective this day.  This has a been a long and challenging fight.  I have cried, I have screamed and I have asked "why God" so many times.  But, in the end He prevailed and showed me a new life direction.  Through the loss of her waiver, I have built a support system like no other.  With my close friends, we are starting a non-profit organization called "Marissa's Missions".  This would have never come to reality if we still had her original waiver. God knew what He was doing, even when I had no clue.   He blessed me more then I could ever imagine, by people who once were strangers, who are now my closest friends.  

I say all of this to you for you to realize that our greatest blessings often come from our greatest pain.  I know that He is a merciful and graceful God- who loves us beyond all that we can imagine.  Sometimes, when we are in the midst of our challenge or fight, we forget that God is there with us.  We feel that we have to handle it on our own, that He is not really in control of the situation.  This is a lesson that He often teaches me daily.  But, I am starting to see His blessings daily.  Thankful that He has allowed me the grace to see His action in work.  Feeling blessed.  

Heartbreak and Hope

This blog is a difficult one for me to write.   I am writing this blog for my many friends who have infertility issues for various reasons.  I am not going to do this topic any justice but God has placed in my life women who struggle to have a baby of their own.   I have been feeling a nudge to write this and I can't tell you how many times I have sat at my computer and started it only to close my computer and walk away.   I, myself, struggled with infertility for almost four years and this topic brings up a lot of painful memories for me.

I think that as woman sometimes we look at ourselves as flawed because we can't or have struggled to have children.   I know that I did.  I felt like I was worthless.  We have gone to extreme measures to have children.  Treatments. Medications.  Sex based on current female conditions.  We watch as other women can get pregnant instantly.  Some of my friends have fostered children.  In hopes, that just maybe this will be their "forever child".  Sometimes it works sometimes it doesn't and they are left empty hearted again.  We end of feeling defeated. Lost.  Depressed.  Confined to our own hell that we have made for ourselves.

Recently, one of my dear friends, lost a baby after she had in vitro.  Her husband and her saved money, in hopes that this would be their opportunity to be parents.  My heart broke for theirs.  I can't even begin to imagine how they would feel.  Which is one of the reasons why I wanted to write this.

I know that some of you can read this and say, "you don't know what its like- you have a child".  You are correct.  But, I know of the struggle and I've seen God do work that only He can do.  In my field of employment, I have met many women that can't have children.  I've seen God work in their lives and give them hope beyond all measure.  One of my closest friends, raised a son for two years only to have to give him to his maternal grandparents.  God took her to the lowest of lows.  Satan tried to divide her family.  It was the worse experience to watch someone go through.  It shook me to my core as a worker.  But, because God is amazing, He blessed her with another son.  I cannot even begin to describe how much that little guy means to me.  Each time I see him, I am reminded that God works.  We always don't understand it.  But, He is always there.  In every moment.  In every day.  In every breath we take.

There is a song by Plumb called, "Need You Now (How Many Times).  The first verse says, "Well, every body's got a story to tell and every body's got a wound to be healed.  I want to believe there's beauty here.  So, I guess you're tired of holding on.  I can't let go.  I can't move on.  I want to believe there's meaning here".  The second verse says, "Standing on a road I didn't plan.  Wondering how I got to where I am.  I'm trying to hear that still small voice.  I'm trying to hear above the noise".  

I think of this and know that each of us has a story to tell.  Only He knows the plan that is intended for us.  We have to let God move us in the direction He has.  We need to stop and listen to Him instead of getting caught up with all the negative things we have going through our heads.

The chorus simply says, "How many times have you heard me cry out, God please take this? How many times have you given me strength to just keep breathing.  Oh,  I need you.  God I need you now".

I love each of my dear friends.  You know who you are.  I know that God has a plan for each of you.  You each are mother's in your own way.  I hope that you find a little piece of hope in this blog.  We are all weaved together in a perfect beautiful quilt for a reason and a purpose.  I hope that even in the worst despair, God is next to you.  He's walking and He's saying, "I got this".

Lesson Learned

Back in December, I wrote a blog titled, "Somethings Just Can't Be Fixed, Amy".  As I read over that blog, I remember the feelings of that conversation that I had with the doctor and the hopelessness that flooded me.  I thought for sure that Marissa would live her life in pull ups and grappling with this reality was just at times too much.  I asked for prayer from many of you and I believe whole heartedly that God has answered those prayers.  If God was to heal any part of her body, I wanted Him to heal this part.  I can deal with the rest of her issues but her being in pull ups at age 13, 18, 21 and so on- just broke my heart.

I have been catheterizing Marissa for over a year now, without much problem from her.  In June, she began to fight to me like crazy.  The situation got worse and it was almost like she was in pain every time we had "pit stop".  I finally told her that if she went to the potty then I would not do pit stop.  I stopped what I was doing and she went into her bathroom and went to the potty.  I was amazed, shocked, and scared.  We've been through this before and I thought for sure this would be a fluke.  But, day after day, Marissa would go to the potty several times a day.   She continues to still need a pull up because she doesn't always have the sensation but already we are seeing much more consistency in her willingness to go.

Last week, we went to see her Urologist.  We are beginning to see some improvement in her kidney function.  The Urodynamic test that she normally doesn't feel, she was able to feel.  This was a good sign even though she was in a lot of pain.  I think the doctors are just being very cautious at this point.  They are surpised but are being reserved in their comments.  However,   one of Marissa's doctor said, "this truly is a miracle".  I know that God has listened to the prayers of His children.  I believe that God heard the prayer of Marissa which simply was "heal me".

God has really been working through Marissa, using her special needs to impact others.  I am learning to understand that while Marissa's behaviors at times are overwhelming, she is really teaching others that just because you may have Autism and other issues, you can still make a difference in the lives of others.  During VBS, for the first time ever, she got up on stage and did the motions to our song in front of over 700 people.  Front and center.  Marissa NEVER did one of the motions during our practices but when it really mattered- she did it.   Her actions remind me of what God did for her.  When it got to the point where the medical community was saying that she would never be able to go to the potty, God answered prayers.  I was doubting that God would heal her, I was doubting that she would do the motions, but when it really mattered, when it really was going to make a difference- God did it.

Lesson learned.

"Most Spirited"

Tomorrow is the last day of school and Marissa has once again defied all odds and will be moving to 3rd grade come fall.  So today was "Award Day" at school.  Marissa got awards for being "Tidy Supervisor" (thank you Autism/OCD); "Top Reader" (she hates to read); "Honor Roll" (5 out of 6 marking periods- because she is brilliant) and then the "Most Spirited" (which sums her up exactly).

So I got to thinking about today about her "spirit" and does this really adequately describe her personality.    So often people will tell me that there is just something about her.  Her teacher  stated that "when Marissa walks into the room, you know she is there.  She brings so much to life with her".  How poignant.  Here is a child who was not supposed to live, defying all the odds and with her she brings life.  So I looked up the definition of the word "spirited".  Here you go, it means, "full of energy, vigor or courage".  Vigor means "active strength or force".  Yup, this most definitely describes my daughter.  All of those qualities that she possess to keep her alive are the same qualities that others admire in her as well.

So often when people hear Marissa's story they look at me and say "God knew what He what He was doing.  Not many people could parent her.".  But, the truth is, God knew what He was doing because He knew I needed her.  To watch her today accomplish so much, to effect others around her, to show people that you can be different- is simply amazing.  So even though parenting a "spirited" child can be difficult, I am blessed that she is because if she wasn't so "spirited"- she may not be alive today.

So I want to celebrate my very "spirited" child.  Her amazing accomplishments in her academics but more importantly that God continues to use her to bring life to others and to show that with just a little bit of courage, a lot of energy and a bit of fight- you can achieve more than what any one thought you could.  Spirited.