Tuesday, October 8, 2013


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.  

Thursday, September 5, 2013

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".

Sunday, July 14, 2013

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.

Monday, June 3, 2013

"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.

Tuesday, April 30, 2013

Trust and Obey

Today, I was listening to Pandora and the old hymnal song "Trust and Obey" came on.  It had been forever since I heard this song.  I had been going over the events of the day and more news from UVA that wasn't so positive.

For some time now, I have noticed, as well as others, that Marissa wasn't retaining information for long periods of time.  It would be like she would learn a new skill or subject matter but if you didn't do it repetitive she would not know how to do it or recall the information.   I often tell people, that there are times that I feel like I live in the movie "50 First Dates".  According to the doctor, we are. Marissa's brain has "injuries" and her brain just doesn't retain the information or skill like it should.   I asked her the question, what does this mean for her in the future.  She just shrugged her shoulders and said, "well, she's not going to be able to go to Harvard".  We know that Marissa is "smart", but not "smart" like other children her age.   She also let us know that Marissa's bladder and bowel issues ARE related to her neurological system.  She let us know that a colostomy bag is probably in Marissa's future.  So as you can tell, a lot of information to absorb in a thirty minute time period.

A dose of reality.   I always think that "maybe one day", is really today.  The reality of knowing that what I was feeling was true.  Hating that mother instinct.  Knowing I can't do anything about it.  Can't change it.  Don't like it.  But, it is what it is.  Now what?  Just another obstacle that we will have to overcome and work through.

So as I was listening to the song, "Trust and Obey, for there's no other way to be happy in Jesus, is to Trust and Obey".  Then I remembered the words that Babbie Mason had shared with our church two weeks ago, "God is too wise, to be mistaken.  God is too good to be unkind.  When you don't understand, can't see His plan, can't trace His hand, trust His heart".  

I know that God has a plan for Marissa.  I know that He is using her life to touch others.   As disappointed and frustrated that I felt today, I know that He is a good God and He is good to her.  I know that she is sealed for Him and whatever comes our way, we will face it together as a family and will continue to Trust and Obey.

Sunday, April 14, 2013

Rissa's Runners

This blog is to all those that supported or joined the Rissa's Runners team for the 5K and 10K events that were held yesterday.  Words cannot even begin to express how thankful I am to each and everyone of you.  Most of you do not know the back story of how this all began three weeks ago, and to fully understand the magnitude of my appreciation, I felt that I needed to share this with you. 

Many of you know that I am a Social Worker.  I have worked in this capacity for 14 years. I applied on several occasions to become what we call a "Senior Social Worker", and have a supervisory role in my unit.  I have applied for this job, five times, and most recently found out four weeks ago that I did not get the job, yet again.  There is no logical reason that I can give you as to why I did not get the job.  I have worked longer then any of my co-workers (with the exception of one).  I know all program areas.  I come to work daily.  I go above and beyond daily for not only my families but for my co-workers as well.  This time when I did not get it, I knew that God just didn't close the door but He slammed it so hard the windows rattled.  Once again, I felt that I am good enough for 2nd but never good enough for 1st.  This has been the motto for most of my life. 

I was feeling very down and discouraged.  What I had put such an importance on, was never going to happen.  I had set this as a career goal and I watched as my dream came crashing to the ground.  See, all the supervisors are young, just starting, my career in this field is slowly coming to an end.  I cried, had my pity party and then God put two very special people in my path to show me I was missing the open door. 

My friend, Shera, went walking with me the night I found out I had not gotten the job.  She reminded me that my mission was Marissa.  Marissa was the gift that I give to other people and that I needed to focus on what I could do to help others like her. This was a Wednesday.  The following Monday, three weeks ago, my other friend, Tiffany sent me a link about a 5K for Autism Speaks that was going to be held on April 13th. 

In less then two days, "Rissa's Runners" was born.  The concept of why we run, was to run for children with disabilities who cannot.  We set a goal to raise $500.  We wanted to have at least ten members.  By the end of the first week, shirts were on their way to be designed.  I took orders for 45 shirts, going all over the place.   There is no other word then amazing.

Over the past three weeks, God has really opened up doors and I have decided to walk through them with faith and hope.  My husband will retire in six years and I have made the decision to follow after him. My last day (Lord, willing) will be January 1, 2020.  I would have worked for over 21 years in the child welfare field.  Over the next six years, I am going to be preparing myself for what my next career will be.  I love children and I especially love children who have disabilities.  I have a few ideas and I will be exploring those as I go along.  But, everything I will do in my future will be to help others who cannot help themselves. 

"Rissa's Runners" has turned into a very unique opportunity for myself and my immediate team.  Tiffany, Lisa, Tracy, Brooke, Amber and I need your prayers.  We have formed "Marissa's Mission" and hope to become a non-profit agency.  Our goal is to assist families who have children with disabilities to purchase medical and technology equipment that are unable to afford it.  We will use our legs and our voices to make this happen.  Each of us is very open to what God has in store for us and it would blow you away if I told you how He continues to open doors for us daily.  But, we need your prayers and your support as we begin to explore this endeavor. 

I'm going to try and put this into words the best I can, so please bear with me.  For a long time, I thought that God had given Marissa to me, in some ways as a punishment.  There are times when I feel so alone and discouraged and feel like I'm not doing a very good job at being her mom at all.   As I have watched the last three weeks unfold, I felt so much love and support from people, who didn't even know us but became a team member and offered support.  We ended up with 25 team members and raised over $2500 in donations to Autism Speaks in Marissa's name.  Simply Amazing. Simply God.  There is no way this would have ever been possible without my immediate team and Shera.  They love me.  They love Marissa.  But,  more importantly they God.   We are "Marissa's Mission". 

I am going to end with this.  I have always been very keenly aware that God puts people in your life for a reason.  Some people for a very short time, others for a life time.  Whatever, reason you have entered into my life, just know that I love you and cherish you more then ever.  Thank you for being a part of my mission!

Monday, March 11, 2013

Its Great to be 8!

Most Saturday mornings, I walk with a couple of my good friends, as a therapeutic outlet.  We walk up to seven miles each week.  Two weeks ago, one of my friends asked me questions about Marissa's birth and her stay afterwards in the Neonatal Intensive Care Unit.  Going back to those moments is very bittersweet for me.  As I recall them, I noticed that my pace picked up quite a bit.  Its very emotional to talk about because in some ways it is very surreal.  So last night, at "lay" time with Marissa (the time where we read a story or talk) I decided to bring out her photo book of those days and began to tell her the story of her life.   

As I flipped through the pages, I could recall the feelings of sitting there helpless, hopeless and confused.  I remember thinking that this was not the way this was supposed to happen.  I was supposed to hold her, feed her and take her home.  I was not at all prepared for what I was going to learn.  All of a sudden the language was different.  I didn't pay any attention in science in school.  I didn't know what they were saying or describing.  I was lost in this land.  

Then I got to the picture of the helicopter that flew Marissa to UVA.  The helicopter that essentially saved Marissa's life.  I clearly can recall the doctor saying, "I have grave concern for your daughter".  We thought she was going to die.  After we had been at UVA a couple of days and more and more diagnosis were piled on top of the other diagnosis, the doctor that had been treating her said, "we just need to get her to age 1".  This became our primary goal, to get her to her 1st birthday.  

So here we are celebrating her 8th birthday.  Each year, we have a party to celebrate her life.  I don't know if it will be her last, so we try to do it up big.   Of course, none of us do, but with her the risk is always a little bit higher.   This year we noticed that she seemed to be a little bit more into the celebration.  Although today when her class sang "Happy Birthday" to her, she began to cry.  She doesn't understand what all of the fuss is about.  She has no idea just how special she truly is to everyone. 

 A lot of times, I get from people, "God knew what He was doing when He gave her to you".  But the truth of the matter is that I need her more then she will ever need me.  Sure it can be tough.  I don't like to be hit and I could honestly do without any of the meltdowns.   But, I know from her the value of life.  I know how important it is to get an "I love you" from your child that you though would never talk.  Or to get a hug from her, because at the moment she wanted to hug you.  But, the bottom line is that she was the desire of my heart.  When I got pregnant, I thought it was going to be all rosy and happy.  I thought I'd have the shopping companion and one day when she was an adult, I could be her best friend.  But, as I sit writing this, I know that I will be her caregiver forever.  And in the brief moments, where its like she is "normal", I know that God is giving me a smile and telling me to forge on.  

And so I say, its Great to be 8!  And next year I hope it will be, its Fine to be 9!  

Thursday, February 28, 2013

Living with Rarities

When Marissa was just one month old,  I remember vividly sitting in the doctors office at UVA with the Geneticist (who looked and acted like Albert Einstein) explain to me that Marissa has a Duplication 2 Chromosome Disorder, and oh, by the way, she's the only one like it.   I can recall looking at him very puzzled and saying, "What?".  As he tried to go into all of the scientific data and I went completely blank, I heard for the first time of what would be many, "We will learn from Marissa".  "She will teach us about her".  I looked down at this precious baby girl and began to cry.

I was a new mother.  I was anxious.  The "What to Expect the First Year" book, went flying out of the window.  When she was about two months old, she popped up with what looked like a very large blister on the top of her head.  At three months, she was Medivac'd to UVA.  We have dealt with heart, lung, kidney, colon, eye and brain issues.  Marissa never has anything normal.  Her lung disease is still unknown to the medical community.  Top Pulmonologist have no idea what it is or if it will go away.  We treat her issues with medical interventions that we hope some way some how will sustain her life.  So it was no surprise that Marissa would pop up with a rare bacteria.  I guess if she's going to get something, she might as well get the most rarest thing. 

Marissa has been a great teacher.  Medications don't always perform the way they should because her DNA is so different from every one else.  She has stumped the medical community on more then one occasion.  Time after time, doctors have said, "Its Marissa, we are learning from her". 

As I watch her face this new battle, I just admire her for ability to fight.  Although at times, well most of the time, her strong will becomes difficult to manage, its her strong will that keeps her alive.  Marissa is a fighter.  Today, I saw her NICU nurse and she says to me, "I will always remember that girl.  She is the only baby that has ever taken off the heart monitors and picked up her breathing hood and threw it".  "She is mighty strong". 

So today, I want to give thanks for that fighter, strong will spirit.  Marissa is alive today because of that spirit.  Her ability to fight rare diseases.  Her ability to show the world that just because your different doesn't make you weak.  I am pretty blessed to be living and raising my hero.