An Open Letter to Legislators Voting on a Cannabis Bill..

Dear Legislator,

I am writing to you as a mother- a heartbroken mom to a child with uncontrollable seizures.  I am writing to you in hopes of YOU being a part in saving my kid’s life.  Please hear me out…

12931129_10101907897181054_1218248821832112042_nMy son was born with a rare brain anomaly and because of it he suffers from brutal, relentless, life altering seizures.  The seizures began at 6 months old and have progressively gotten worse.  He doesn’t know what it is like to go one single day without jerking, spacing out, convulsing, or twitching.  Can you imagine?  Waking up every single day waiting for the seizures to start then waiting every single day for the seizures to stop. Anticipating the next one all day long.  That is my child’s day, everyday.  Seizures are the Chairmen of the committee of our life.  And it sucks.

Many people with epilepsy can control their seizures with medications.  Many cannot-my kid is one of them.

At nine years old, my son is currently taking six medications twice a day in order to “control” his seizures.  (Basically enough meds to knock out an elephant for a night.)  These FDA approved medications have caused him to regress developmentally to the point of being strictly fed through a feeding tube.  He no longer has muscle tone to hold his head up, much less his body.  His liver is being closely monitored every few months for cirrhosis.  His gums are so swollen that his adult teeth can’t break through them.  He sleeps approximately 20 hours out of the day.  He is in a constant state of “daydreaming” due to the absence seizures that plague his brain every few minutes.  The two rescue medications he has cause his heart and breathing rate to slow, putting him in danger each and every time it’s administered to him.  Seizures and FDA approved medications are causing my beautiful child to wither away before my eyes and all the while so many legislators are sitting amongst their fellow members debating on which political party is the best one, which big business will tell them how to vote this time, and which lobbyist will be taking them out for lunch.

Lives are being lost daily due to seizures.  It has to stop.

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Beautiful Bailey with her mighty dad Jason.  She spent her entire life never experiencing seizure freedom.  Rest In Peace sweet girl.

Mr. or Mrs. Legislator, simply put-I’m over it.  I’m over the hullabaloo of committees stating that cannabis is a gateway drug.  I’m over the argument that making cannabis legal will only make crime rates go up.  I’m over legislators putting off the bill for next year.  My son and the thousands of other children and adults like him are depending on you because the medical professionals have done all they could do.  They have run out of options.  FDA approved meds, high dose steroid and Intravenous Immunoglobulin infusions, Vagus Nerve Stimulators, corpus callosotomy surgeries…so many options that do not provide relief for those afflicted with uncontrollable seizures.

Do you understand that?  There are no more options.  Except for cannabis.

So the ball has been tossed in your court, err committee.  It is time for the excuses to stop.  Put your political parties aside.  Tell the people and companies that dictate how you vote to shut their mouth and step aside.  There are lives at stake.  It is time for our elected officials to take an interest in their most vulnerable constituents.  The ones who have run out of options to control their seizures, their pain, their behaviors…  The ones whose lives are depending on YOU.

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Darling Gabriel and his brave mother Robin fight for cannabis use of epilepsy in their state every year..

Currently there are 26 states that have legalized medical marijuana in an oil format, 25 of those have epilepsy or uncontrollable seizures as an approved condition.  I march to my state capital rallying for my child’s life constantly, begging representatives and senators to listen to me.

Numerous legislators tell me that they wish they could help, but legalizing medical marijuana is dangerous-even in an oil format.  They say it is a gateway drug.  They say it will cause more crime.  They say no over and over again.  They say no to my kid who does not desire to get high (although I can assure you he is certainly high on barbiturate medications) or smoke weed for fun.  They say no to my kid who desperately wants to live a life where he can have a single thought not be disrupted by an electrical misfire in his brain.

12376657_995246423900034_5305185750960114782_nParents of children plagued with seizures are fleeing to states like Colorado or Oregon where they can give their son or daughter a new life.  A life without medications with zombie-like side effects and a life where they can thrive and be free from the monster that is known as epilepsy.  They long to see their kid do typical kid things like play at the playground, sit unassisted with their favorite toy, or at the very least have their innocent child look at them in the eyes and smile.  Yes, I said smile.  In our world, seizures and anticonvulsant medications steal their smiles.  And it is truly awful.

My heart breaks a little more with each passing day as I push these toxic, poisonous medications down my child’s feeding tube.  I cringe every time I administer the medicine that is supposed to be helping my son because I know it is poisoning him.  And sadly I know that my government is okay with this.

12717192_1240326772664027_8025754235408611976_nSo dear legislator, I am coming to you as a law abiding, working class, VOTING citizen of your state.  I come to you in tears as I sit here holding my vibrating child as yet another seizure has taken hostage of his brain.  Parents are supposed to protect their children and here I am failing at it.  I’m humbly asking that you open your mind and your heart to understand a quarter of what our life entails…desperately trying everything imaginable in order to save the precious life that you brought into this world.

Please trust the bill proposed and consider the thousands of lives that will change for the better.  Think of the lives that have the potential to be productive citizens if only their seizures could be controlled and the lives that can be saved with a single drop of oil a day.

Sincerely,

A mom who is trusting you to do what is right, for everyone

 

 

 

A Medicaid Waiver Story.. {A waiver saved my son, now we must save LA’s waiver program}

Approximately 9 months ago my child, who was born with a rare brain malformation, received an emergency waiver and it couldn’t have come at a better time.  My beautiful child was regressing both developmentally and medically before my eyes.  You see he had been on the waiting list for the NOW waiver for numerous years, but as I sat holding my seizing child, struggling to breath, needing constant 24/7 care in my arms one night I knew that he would die before his name appeared at the top of the list.

“The mission of the NOW (New Opportunities Waiver) is to utilize the principles of self determination to supplement the family and/or community supports while supporting dignity, quality of life, and security in the everyday lives of people while maintaining the Recipient in the community.”

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Most people you meet know nothing of this waiver provided by the state’s Department of Health and Hospitals.  They don’t know that it provides resources, respite care, Medicaid, a life at home with the person that is disabled..  They don’t know that thousands of families fight to keep their loved one at home, rather than place them in an institution.  They don’t know that raising a child or adult with developmental disabilities takes people–more than two hands– to help support this child on a daily basis.  They don’t know that raising this citizen requires an insurance that works with them approving their 12 monthly prescription medications, 17 yearly hospital admissions, wheelchairs every few years, suctioning machines, chest percussion machines, breathing machines, oxygen, and the list goes on and on.  They just don’t know.

Connor lived a happy, relatively healthy life for his first 5 years here on Earth.  He had few hospital stays and needed very little “help” in raising and caring for him.  The most we dealt with was seizures, but medications were somewhat controlling them.  My husband and I felt blessed that our child that had such a grim prognosis was actually thriving.

Then the bottom fell out.

Connor endured a seizure lasting longer than 36 hours and was placed in an induced coma to relieve his brain from the relentless seizing.  Doctors informed us of a few possibilities that would impact our child that night in PICU Room 8 in Children’s Hospital of New Orleans.  So we held hands, held our breath, and prayed that God would intervene and save our miracle boy-restoring him to the happy, mobile, verbal child that he once was.

A week later he groggily opened his eyes.  And smiled.

My heart leaped, rejoicing that his brain hadn’t sustained significant injuries from the status seizure.  That familiar toothless smile gave me hope.

We brought him home ready to resume our lives.  However, that wasn’t in the plan.  His seizures became more frequent and were hard to control.  He went from taking two anti-epileptic medications to six with two rescue medications.  As the medications grew in number and strength, my child’s ability to maintain muscle tone and alertness fell.  Before I knew it my boy was asleep 22 hours out of the day and the two hours he was awake he was in a staring seizure.  This type of life-day in and day out-led to being completely nonverbal, loss of holding his head up, no longer using his arms or legs, completely feeding tube dependent, and his immune system weakened.  A simple cold virus was landing us in the PICU more often than not, where he required oxygen or a breathing tube.  Our lives had turned upside down and we mourned the loss of the child we once had.

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I found myself exhausted from caring for him-suctioning, lifting him, vest therapy, airway clearance, bathing, transferring him from the car to his chair, monitoring his breathing, stopping while driving to attend to his constant secretions on the side of the road-it was too much for one person alone.  My husband and I both had full time jobs, but were having to take off frequently for hospital stays, illnesses, and because he couldn’t attend school without catching something.  I had no where else to turn and my other two children were suffering because of it.  Putting my child in an institution and living life in a hospital were not options I was willing to make.

Then a light shined upon us…

A fellow parent of a child with special needs helped me navigate my way to applying for an emergency waiver.  Fast forward five months and our life was flipped right side up with Connor’s approval of the NOW waiver.  I had no clue how much it would mean to my family.

So what all is this waiver doing for my son and our family?  Well, first and foremost I have an extra set of hands on board.  He has a loving nurse and respite care attendant that help me care for him, keeping him happy and healthy AT HOME.  He has Medicaid insurance which relieves an ENORMOUS financial burden off my husband and I for his 12 prescription medications, hospital stays, surgeries, equipment, etc.  He has a coordinator that assists us in every aspect of his life ensuring that he gets what is needed so that we can continue to care for him in the comfort of our own home.  He has funds to buy essential equipment or house modifications that insurance doesn’t pay for.

This waiver provides my family with quality health care and the ability to watch my child enjoy his life like he was intended to.  He gets to hear his brothers everyday as they enter and exit his room talking to him and giving him hugs,  he gets to feel the comfort of his momma’s arms wrapped around him every single night as his care attendant assists in his other needs, he gets to ride with his daddy to go check on the cows in the evenings without fear of contracting an illness from a stranger outside.  This waiver enables my child with numerous special and medical needs to thrive at home with his loved ones, while still having access to his community.

It’s a game changer and one that he cannot live without.

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As of January 2016, the waiver programs here in Louisiana are in danger of being cut if legislators do not assist our Governor in finding additional funding to fill our state’s billion dollar deficit.  Waiver programs are optional and not mandated, therefore they are always on the chopping block when addressing the state’s shortfall.  The waiver programs are currently assisting over 8,000 individuals just like my son and to remove the waiver from them–well it will have devastating and disastrous consequences.

If you are caring for someone that is either on the waiver program or are waiting, know or love someone like described above–I urge you to contact Louisiana’s state legislators explaining how the cuts will affect these families and how additional revenue must be raised in the upcoming special session in order save Louisiana’s most vulnerable citizens.

We have to be the voice for the voiceless and show their life is just as valuable as all others.

 

Find your local legislator and his or her contact information at the website below..

Thank you!

https://www.legis.la.gov/legis/FindMyLegislators.aspx

 

When your child’s life has an early expiration date.

Four children have died in the past month.  Not just any four children, but four children that have the same rare disorder as my son.  And that scares me.  Our children’s lives have an early expiration date.

12036600_1159181797445192_2006501262339252794_nYou see, this rare disorder has had the potential of taking their life since they were born.  Upon diagnosis the doctor comes in with papers and solemnly delivers the news that this condition can be deadly and can take our precious child without much warning or it can happen over time.  And so with this news, we take our babies home and watch them like a hawk, monitor their illnesses like an ICU physician, bring them to the ER when we have that famous “gut instinct”, and we hope and pray that they’ll be the child that makes it to adulthood.  We are most definitely those beloved helicopter parents.  And for good reason.

I don’t know these four children personally, although I feel I do.  Their parents and I are family by way of having a child with special and medical needs on social media.  I have watched these four children grow up, watched them reach milestones, watched them endure hospital stays, and watched them be oh so loved by their families.

Then one day, the news spreads like wildfire.  Another child is gone.

Their deaths knock the wind out of me like a punch in the stomach.  I sob at the news and mourn their loss for days, weeks, and years after.  Their loss hits me deep in my heart where I can feel a tiny sliver of the heartache their parents feel.  In a way, their child is my child.  And my child is theirs.  When one of the group buries their baby, we all grieve.  Because after all, that could’ve been our baby.  We can be removed from this elite group that we belong to and put into another elite group that no parent should ever have to belong to….the group of parents who now have an angel in Heaven.  The group that has empty, aching arms.  The group that we fight to stay out of with every ounce of our being.

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I wish I could ensure that my child lives a long, happy life.  But I can’t. I don’t make the rules.  But still, I dream…  I think about what he’ll look like when he’s a teenager.  I think about how his older brothers will go off and get married and he’ll be here with my husband and I smiling happily as they come back home to visit.  I think about him being the size of my husband and us having to recruit help in caring for him.  Yes, this life may sound arduous and incredibly difficult-but the thought of losing my child to his diagnosis gives me a stabbing pain in the heart and makes my throat close up that is far more difficult to deal with.  To no longer see his bright smile or sparkling eyes, no longer hear his infectious laugh or him humming to his favorite toy, no more hospital stays or therapy, or no longer caring for every aspect of his life-like I’ve done for the past 9 years-that is a heartache that I’m not ready for or will ever be ready for.

While I grieve the deaths of these children and try to stop my own child from going to his eternal Home, I remind myself to live in the here and now.  Instead of worrying nonstop (which I do) about the how, when, and where-I have to tell myself that my child is alive today and I need to cherish his presence.  I soak in his goodness every single day.  I embed these memories we make-both the good and the bad-in my brain.  I breathe in the smell of his shampoo and lotion when rocking him.  I brush his thick hair with my fingers and feel its texture so that it’ll stay with me forever.  I try to make mental pictures of the life that is in his eyes so that I’ll never, ever forget.  I just try my best to remember all of him, every single teeny tiny last piece of him.  Forever.

This life we live is brutally difficult, strenuous, and exhausting, but it is beautiful.  It is ours together.  And as hard as it may be I can’t imagine not living it anymore.  So I’ll sit here tonight rocking him, breathing him in and cherishing every day like it is our last and I’ll continue to do so until the end, when either I or he gets called Home to be with the others.

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Rest in peace sweet angels.  May your perfect bodies run, dance and leap for joy in Heaven.

Gaining Grace {Incorporating His grace in my every day life.}

I’ve been an opinionated momma for the past 10 years or so.  I ensure that my children are loved and well taken care of everyday, and I don’t bite my tongue when I see an injustice.  This momma bear instinct in me has grown into other areas of my life where my emotions can run high.  I’ve recently taken a step back and really thought about if this is the right thing to do.  Am I showing grace in these actions and words?

That brings me to thinking of the new year and how I can incorporate God’s grace into my everyday life, conversations, and actions.

Grace:  favor, kindness, blessing.  Grace is a reoccurring theme in the bible and He willingly bestows it upon us on a daily basis.  Grace is God giving the greatest treasure to the least deserving, which is all of us.  And here I am, unworthy of His grace, praying for it daily.

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Social media has turned ordinary Christian people, including myself, into self-righteous drones.  We see a post by a “friend” and feel the need to throw our opinion into it, whether it is positive or negative.  Controversial issues are ubiquitous on newsfeeds and the desire to express our own thoughts burns inside us.  And so with a few finger punches on our phone’s keypad we deliver our words on a cold, glass screen.

These words.  Are they necessary?  Eh, probably not.  Lighthearted bantering of opinions can be fun, but just like a bunch of rowdy boys roughhousing it can turn ugly real fast.  These words can linger in our friends and family’s thoughts through the night.  I often find myself wishing I had shown more grace in my words, or not commented at all.

12483701_10101785205221724_1789862389_nSo this year I am praying for more grace.  Oh how my life so badly needs His beautiful grace to encounter the hustle and bustle of my every day life.  I need His grace when casually scrolling FaceBook.  I need His grace when my child with special needs is on his ninth hospital stay for the year.  I need His grace when I have accomplished something and I’m proud of myself.  I need His grace when encountering a mother complaining about her child who is so desperately seeking her undivided attention.  I need His grace when sitting in a restaurant and having onlookers gawk at my child with special needs blow bubbles with his mouth.  I just NEED His grace.

I sin daily.  I repent and ask for forgiveness.  I sin again.  I repent, again.  But oh my heart how He loves and forgives us.  His grace is so much bigger than my sin.  I’m in desperate need of his unmerited favor and mercy, all the time.

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This year I want to do many things and have a few resolutions swirling around in my head that I’ll probably-eh probably not accomplish, but my number one is asking for God’s wonderful grace to stay the course.  I crave His goodness.  I want to share His grace with others in my words, actions, and thoughts.  Will I fail in my endeavor?  Probably so.  But you can bet your bottom dollar that I will try and try again.  Oh to be full of grace…

We need less mindless Twitter wars, less FaceBook bashing, less Instagram envy posting, and less SnapChat sass; we need more grace, and a whole bunch of it.  Can I get an amen?  (:

Please join me in praying for God’s grace to surround us so that we can serve and love him more fully this year and every year.

Happy New Year folks!

 

Christmas and Kids: What they need to know.

Christmas.  A time when we Christians celebrate the birth of Jesus Christ.  It is a time when we surround ourselves with loved ones exchanging gifts amongst the traditional Christmas tree full of lights and decorations and it is also a time to give back to others.  It’s truly a beautiful time of year.

However, this beautiful time of year can quickly turn ugly.  Excessive shopping, hurriedly running from one place to the next in search of the best deal {even if you have to fight a total stranger for it}, selfishness, jealousy, entitling children to numerous gifts from Santa, etc.  The list goes on and on.  Christmas has become so commercialized and most kids think of this holy holiday as a time of presents-lots of presents.

Our children need to know the truth about Christmas.

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Jesus Christ was born so that he could die in order to save us from our sins.  His entire life was lived in order to show God’s love and to give to others.  What an idea, huh?  Can you imagine living your life every single day in order to exude love to complete strangers while giving of yourself until you have nothing left to give but your life?  It’s powerful.

My kids, like millions of other kiddos, get presents from Santa every year. 3 actually.  While Santa is magical and allows my children’s imagination to grow, I strive to put the focus of the Christmas season on Jesus.  The joy of the season is not in presents that will be under the tree that chilly December morning, although they sure do put a smile on their sweet faces {which I love}, the joy is in knowing that years ago a King was born so that we may know eternal life.

10455034_10101248016971284_7331205198575266664_nThe joy is also in giving back through the love in our hearts.  The remembrance of God’s incredible act of love by giving His one and only Son for us should light a fire in our hearts.  I love celebrating the birth, life, and resurrection of our Savior, but I also love trying my best to help those in need.

This time of year can be a time of sorrow for families struggling to make ends meat.  Parents weighing their options to pay bills on time or get their child one simple gift.  An elderly person wondering if he’ll have enough money to buy food on Christmas day.  A child born and raised in poverty hanging their head knowing that Santa won’t make it to his house this Christmas season again while everyone else in school is joyfully leaping in excitement.  A family learning how to get by with much less after their father suddenly passed away in an automobile accident.  There are so many in need, all the time.

My boys were 8, 6, and 2 years old when we began adopting families to help during this joyous season.  We went in search of families or individuals who were in need of love, food, clothing, companionship, and/or gifts.  That first year we were able to bless one family.  The second year we adopted two families.  With each year our hearts grew in love and faith more than we could have ever imagined.  My kids were beginning to understand the true meaning of Christmas and they yearned to see the smiles on the faces of others, rather than themselves.

12341448_10101750080985974_8510366220776862003_nThe hunger in ones heart to help others is there, but often people don’t know where to start or how to go about being the hands and feet of Jesus here on Earth.  So last year I included my FaceBook friends and family to join me in blessing as many families as I could find.  I posted specific details about a few families in our community and what happened next blew me away.  Donations started pouring in, friend after friend called or messaged me asking what they could buy, local businesses bought bikes in bulk.  Parents included their children in picking out toys for children in need of a smile Christmas morning.  Children learned the wonderful feeling you get inside when you help others.

We live in a world where we put a strong focus on helping ourselves and family first and foremost.  Yes, it is important to take care of our family and treasure them, but we should remember those who are in need too.  We must never forget the ultimate sacrifice that was made so many years ago, a sacrifice of love.

This Christmas I pray you remember to teach your children what Christmas is all about. Out of gratitude for what God did for us, we remember His birth by giving each other gifts, worshipping Him, and being especially conscious of the poor and less fortunate.  Before bedtime chats, car ride to school, eating at the table, bath time–anytime is the perfect time to instill the real meaning of Christmas in your little one; it’s a gift they will remember for years to come and hopefully teach their own child one day.

Be blessed and bless others my friends.  Merry Christmas.

 

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**If you are interested in finding a family in need in your community I encourage you to reach out to local churches, shelters, public schools, food banks…  I also encourage you to include your children and family and friends in this wonderful act of love.**

 

 

My Heart is Content…

I sit here listening to sounds of the machines trickling, humming, beeping.  I sit here looking around at the equipment, hospital beds, chairs, outlets.  I sit here taking all of you in, absorbing all of the calming peace that you exude, albeit just two hours earlier you were lying on an operating table.

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As I lie next to you on this single sized bed I am reminded of our blessings and how lucky we are.  As I lie next to you I think of the world outside these hospital walls and wish they could live in our world for only a moment to feel what pure, trusting love is.  As I lie next to you I pray to our Heavenly Father for his grace to fall upon others as it has fallen upon you and me.

I used to wish that we walked a different journey on this Earth.  I used to wish that you were healed and were a typical little boy running up and down these halls, instead of me pushing your wheelchair.  I used to wish that our life was simpler and not so complex.

But that was a different me, hoping for a different you.  Times have changed, minds have opened, and hearts have been filled.  I am content.

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I am content in knowing that this very hospital, the one that has saved your life time and time again, is our home away from home.  I am content in walking this topsy turvy path that God has placed us on.  I am content in loving every ounce of your perfectly imperfect Earthly body.  I am content in our complexly simple life for it has made me the mother and woman that I am today.

Gone are the days where I worried about what others think.  Gone are the days where I worry over minute things that used to occupy my mind for hours upon hours.  Gone are the days where I stressed about everyday life.

Admiring your innocent face sleeping so peacefully I can’t help but to shed a tear.  While your diagnoses may have seemed like a tragedy at first, they are now you- the boy who I love far more than I ever thought my heart was capable of.  Though you experience more health issues than any person should, you are braver than I ever could imagine being.  Keeping you healthy and happy is my most important job and advocating for you and others who walk our same journey is my mission in this life.

I know you didn’t choose this life my sweetness and Lord knows I didn’t either, but our Savior handpicked us to be together from the very beginning.  I may have questioned Him eight years ago when you and your multiple diagnoses were placed in my lap, but I understand now.  I believe you were sent here to wake me up from my mundane life.  You were sent here to me so that we could be a force to be reckoned with.  You were sent here to me to light a fire in my heart so that I could try to do His work through you.  You were sent here to me and I am forever thankful for my angel on Earth..

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Holding you close and listening to the sounds of this hospital, soaking in the pure goodness that you are filled with I can only pray that other’s lives can be touched so profoundly by knowing and loving someone like you.  I am grateful for this life that seems on the outside so treacherous, but on the inside is so full of love and where we are able to find the blessings in everything we do.

My heart is content in this complexly simple life…with you.

Dear Humanity, I’m not giving up on you.

Dear Humanity,

A few days ago I experienced various situations where I was discouraged by the behavior/demeanor by fellow humans.  It really got to me.  But I want you to know that despite how discouraging it was, I’m not giving up on you.

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I attended my sister’s college graduation the other day.  I was the beaming proud big sister who anxiously walked to the packed university center with my 4 year old and 8 year old sons in tow.  We made our way up the ramp and my 4 year old held the door for me as I pushed my 8 year old in his shiny wheelchair through.  We stepped inside to find hundreds upon hundreds of people hurriedly walking to their seats, so we quickly slipped into the bustling line of people.  It was then that my love for humanity was tested…

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To the man who thought it was okay to jump in front of me pushing a 70 pound wheelchair with a sweet little boy in it and then get upset when I touched your leg with the foot rest of the chair, I’m sorry that I bumped into you.  I’m sorry that you felt the urgency to make your way in front of me because obviously having to walk behind me and my 4 year old son was just unacceptable.  I’m sorry that you turned around and glared at me when the chair skimmed your pant leg.  I’m sorry you scoffed at my apology.  But what I’m most sorry about was that my 4 year old witnessed you do this with wide eyes.  I don’t want him for one second to think that it is acceptable to rudely force himself in front of someone else and to laugh at apologies.  The world doesn’t revolve around him, or you for that matter.

To the lady who stared at me with her “ugh” face as I gave my son his 15 medications through his feeding tube in the corner, I’m sorry you had to see this.  I’m sorry that you had to see a teeny, tiny glimpse into my life of special needs.  I’m sorry that you felt the need to stretch your neck over the side of the banister so you could peek at the monstrosity of a feeding tube while you told the person next to you to look also.  But what I’m most sorry about is that there is a possibility that my 8 year old or 4 year old son saw you with your “ugh” face staring at us.  I don’t want my children thinking that it is okay for them to gawk at others and their differences.  No one is inferior to them, or you for that matter.

To the lady who told us to “pick up and hold him so my daughter can sit down”, I’m sorry you felt that you and your daughter were more worthy of a seat than my sonI’m sorry that you didn’t ask this in a courteous way because I would have gladly picked up my son so your daughter could sit down.  I’m sorry that when we did move you didn’t say “Thank you” and that you just expected us to give in to your demands. But what I’m most sorry about is that my 4 year old witnessed you be extremely rude, disrespectful, and demanding.  I am teaching my children to treat others with respect no matter who they are or what the situation is.   Courtesy is not below them, or you for that matter.

To the crowd of people who thought it was okay to stand in the middle of the sidewalk as I patiently stood with my children waiting for them to step aside, I’m sorry that you had to move your conversation so that we could pass.  I’m sorry that I couldn’t just walk in the grass to go around your discussion which was directly in the path of hundreds of others.  I’m sorry it was muddy that day and wheelchair wheels don’t take kindly to mud.  I’m sorry that you got upset when I said, “Excuse us!” as I tried passing you.  But what I’m most sorry about is that my kids, along with the long line of others behind me saw this play out.  I don’t want my boys to think that they are above anyone else and can take over any space and then be rude to another human being.  It isn’t all about them, or you for that matter.

Everywhere I go, society/humanity seems to be going against everything that I am trying to instill in my children.  How can my child rationalize what I’m teaching him when he sees grown adults do everything I tell him not to?  I fear that humanity is only getting worse with it’s selfish, angry, entitled, rude, ME ME ME ways.  There is a lack of love and kindness.

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I want my kids to love others more than they love themselves.  I want them to be humble.  I want them to enjoy making others happy just as much as themselves.  But above all else, I want them to be kind.  Fortunately, my boys are provided with everyday instances where they encounter kind people who display respect and love for one another.  This is what gives me hope for humanity.

Let’s stop living to please ourselves and let us practice love instead of anger. We live in this world together and have a long way to go.  So in the mean time, I’ll be here trying to teach my children to love and respect others with a kind smile as I hold onto hope that this generation of ME will be short lived.  Don’t worry humanity, I’m not giving up on you.

Sincerely,

A hopeful Momma

Back to Being “Us”

There once was a time when my husband and I were a fun loving, care free couple who were madly in love and the world was at our fingertips.  It was a time of dating, learning each other’s quirks, laughter, flirting, snuggling, and just plain FUN!!  This very short lived time is engrained into my mind and I often think about those days with a smile.  I think what I miss the most of this time was just the two of us enjoying each other……alone.

9 years.  That’s how long my husband and I have been married.  9 wonderful, blessed, crazy years.  In these 9 years we have expanded and are now ruled by three tiny boy humans.  We are still a fun loving couple and madly in love, but care free…ummm….not quite.  And while the world could still be at our fingertips, just thinking of a trip with the five of us makes my head hurt and needs lots of notice.  Lots.  Although I am in love with our brood, my mind often takes me back to those carefree, dating days.  Back when we were “us”.

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Back when we were us, our nights consisted of spontaneous outings at 9pm or a last minute trip to “the Box” to watch some LSU baseball.  Back when we were us, our mornings consisted of sleeping late and pillow talk of what we’d get into that day.  Back when we were us, when the feeling felt right it was all teams go as we raced to the bedroom.  Back when we were us, we’d hold conversations that would last for hours as we sat on the couch eating pizza out of the box and drinking beer.

Now there is a new type of us.  The new us consists of being in bed by 9pm and outings require a few hours to pack up all the boys and get out the door. The new us has early morning alarm clocks and a quick I love you as we head out the door to work.  The new us still gets hit by that feeling, but we’re interrupted with a loud knocking on the door and “WHAT ARE Y’ALL DOING IN THERE?”.  The new us still has pizza and conversations (and beer), but conversations mainly consist of what the kids did in school that day, what bills need to be paid, and rock paper scissoring it to see who has the battle of putting the kids to bed.

Ahhh life.  It changes in the blink of an eye.  Don’t get me wrong, I absolutely love my party of 5! Snuggling my sweet boys, hearing “Momma, I need you”, and the everyday adventures with kids is absolutely wonderful.  I wouldn’t change one thing.  Yet, every now and then I long for the days when life was simple and it was just the two of us….  We do the date night when we can find a sitter and that is amazing, but getting a taste of the old us leaves me wanting more.

So this year we did something that we typically don’t do.  We booked a trip to Las Vegas on a whim for our 9th anniversary.  Was I nervous about leaving my children and being quite a few states away? YES!  Did we have the funds just hanging out ready to spend on such a vacay? NO!  But were we eager and ecstatic to get back to being us? YESSSSS!!!!  So off we flew to the City of Lights!

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I have to admit I thought I’d be more homesick and missing my babies once in Vegas.  Once we reached our hotel and had a minute for the realization of our trip to sink in, I was so thankful that we took this trip and was eager to be referred to as Katie, rather than momma, for the weekend!  We saw shows, dined at fancy restaurants, lounged at the pool, strolled the streets of Vegas, gambled a tiny bit, and-my favorite- we soaked up every second of being US!!!

I was reminded of the little things that made us fall in love in the first place.  Just a few days away from our everyday schedules gave us a much needed boost.  It boosted our relationship.  It boosted our love and affection for one another.  It boosted our attitudes.  It boosted so many things that we tend to forget or neglect in the midst of our crazy life.  Keeping a marriage or relationship happy, loving, and “heated” is so so important.  It’s crucial to not let your children interrupt what made you a couple in the first place. After all wasn’t it your spouse that made you the family you are today?

I am beyond thankful for our little getaway (I highly recommend other couples do the same—be selfish and leave the kids at home!) and I’m so thankful for this time where we were back to being us.

The Dad Behind the Diagnosis

When you become a parent it changes you.  But when your tiny, brand new baby is given a life altering diagnosis that thrusts you into the world of special needs it really changes you.  Some people change for the better and some change for the worse.  Your relationship with your spouse can get stronger or it can fall apart.  The first few years of this new life will reveal that change.  Slowly but surely, you’ll see it developing.  And in the end many husbands and wives make it through the rocky path and learn to navigate this new life together and their relationship not only survives, but thrives.

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When your relationship is strong and makes it through, the dad behind the diagnosis will become a different man.  He’ll become someone that you will love exceedingly more.  He’ll listen more and learn patience.  He’ll see things in everyday life with new eyes.  He’ll think more with his heart, rather than his brain.  His eyes will well up with tears at the sight of your beautiful miracle child doing something ordinary that he or she was never “supposed” to do.  All of these changes are due to your child that was born with special needs.

In these relationships, 98% of the time the mother’s life revolves around the child with special needs.  It is usually the momma who brings them to the doctor appointments and therapies.  The momma packs her bag and stays by their side for hospital admissions.  The momma will often leave her job to stay home and care for this precious child.  It is usually the momma who keeps everyone abreast of the child’s health.  It is the momma who openly expresses her feelings about living this wonderful, yet difficult life.  And it is the momma who is usually seen crying as she endures yet another blow of bad news from the doctor.  From the outside looking in, it seems the momma carries most of the load of all that a special needs life has to offer.  However, nothing could be farther from the truth…

The dad in this picture is often overlooked.  Most of the time Dad is working.  A lot.  He finds himself at work wondering how his child’s day is going more often than not.  Finances usually depend on his paycheck.  If he isn’t working he is taking care of the home front and other children, a duty just as important as any other.  Most of the time his emotions are hidden by a strong face and he rarely let’s those emotions loose, so he cries alone when no one is around.  Most of the time he wishes he was at those doctor appointments hearing the news straight from the doctor’s mouth because he wants to know everything just as much as his wife does.  Most of the time he is silent with his frustrations about this arduous life and he learns to deal differently.  This is often why others forget about Dad, he plays a quiet but important role.

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His heart aches for his child and his mind swirls with thoughts of what was supposed to be.  He thinks of how he should be playing catch in the backyard with his son instead of lifting him into bed at night because he’s gotten too heavy for momma to do it.  He thinks of how he should be letting his little girl play dress up with him and having tea parties instead of setting up the feeding pump that will give her nutrients through a feeding tube for 18 hours straight.  While he holds onto hope that his miracle with so many special needs will get better, he experiences what true love is daily through his child and  accepts this life, puts on a brave smile for his family, goes to work to pay the bills, and is always there to hold his wife when she feels doesn’t know what to do or where to turn.

This dad experiences the joy, the heartache, the love, the fear…all of it.  He is willing to go unnoticed, unheard, unseen not because he isn’t equipped to live this special life, but rather because he is willing to be the strong, silent backbone for his child and wife.  He is selfless and puts his own feelings aside so he can power through and take care of his family.  In a society where the moms of children with special needs are constantly praised, the dad is often the unsung hero behind the scenes snuggling, bathing, giving meds, working, allowing his family to thrive.

The dad behind the diagnosis may be hidden from your view, but he is there.  Quietly supporting his family….and doing an amazing job.

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Kudos to all those great dads out there who are raising a child with exceptional needs with their spouse or by themselves!  In case you haven’t heard this in a while… You.Are.Amazing.

Do you know a dad behind a diagnosis?  I’d love for you to share this and let them know how awesome they are!

My Dear Child, I have a confession…

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My Dear Child,

I have a confession.

Through the 8 years you have been in my life I have prayed and longed for you to be healed from all of your diagnoses, illnesses, and struggles.  I have yelled at God for allowing my sweet, innocent baby to come into this world with such life altering afflictions.  I have traveled the world seeking treatments to help you overcome these diagnoses.  I have pleaded with doctors for answers and to save you from distress.  I have always wanted you better.  That is all I have ever dreamed of.  A better you.

As I was lying in bed early this morning, I could feel your warm, plump hand against my shoulder.  You were stroking and patting my shirt, in what seemed like an attempt to wake me, as you laid in the still darkness of my bedroom.  I turned around to find you awake with your bright sparkling eyes blinking happily.  I kissed your perched lips good morning and you quickly returned a kissing sound to me.  Then that signature toothless smile came.  We giggled and hugged and made the most out of our alone time as I brushed your perfect dirty blonde hair with my fingers.  I loved every second of it.

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These are the moments when things become clear to me.  Crystal clear.  Although I pray for a better you, I know I shouldn’t.  God’s plan for you is so much grander than I could ever fathom.  He sent you here, to this place we call Earth filled with so many people who long for hope and love and peace, for a very specific purpose.  God formed you in my womb with all of your perfect abnormalities according to His will.  He knew that your life would be one of hardships, pain, and diagnoses.  And in His divine plan you were destined to be mine.  God handpicked you to come into my life and change it, it was up to me to decide how.

I have to admit the first few years with you were rough.  You cried ALL.THE.TIME.  You puzzled me.  You pushed me to my limit.  You made me question everything that I was brought up to believe in.  I couldn’t understand the why’s or how’s.  I didn’t know God then, even though I thought I did.  But you my child.  With your persistence and will and love for life, you changed everything slowly but surely.  I have watched you suffer.  I have hit my knees asking God to make it stop and wondered where He was when you needed Him most.  You have endured back to back hospital stays, agonizing seizures, gruesome surgeries, relentless needle sticks, tests after tests…things that no one should ever have to live through.  Yet you my beautiful child, you endured these things and then you smile…..a smile that knows much more than I do, a smile that is from Heaven.

Years have passed and our life together has crystalized.  You have learned how to navigate your life and your courage amazes me.  I have seen miracles performed on your little body and I’m just in awe.  You smile through it all.  Your joy is infectious.  Having you in my life has made me a better human being.  You have deepened my faith without ever having said one single word.  All from being exactly who you are, no more no less, the person God created just for me.  I am eternally grateful for you.

I go about sharing your testimony to our family and friends and to anyone who will listen because I want others to experience you and our Savior.  You have shown me that God is displayed everywhere.  He is displayed in your smile that ignites joy in others.  He is displayed in your eyes that are so beautiful and full of life.  He is displayed in your presence that makes others renew their faith in God and humanity.  He is displayed through you my child and it is a beautiful thing.

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So I lie here watching you wave your hand in the air feeling the wind from the fan and contently clicking your tongue and I think to myself how I could want a better you.  It isn’t possible.  You are perfect.  I am so sorry that you can’t enjoy life the same way others boys do and play ball with your brothers.  My momma heart wants you to have sight, and walk, and talk, and be a typical kid.  While that would be absolutely amazing and a dream come true, it wouldn’t be you.   I wouldn’t be who I am.  And the thousands of other lives you have touched wouldn’t be themselves either.  You are our warrior and you teach us to appreciate the small things, find the blessing in every situation, and to love unconditionally.  You make US better.

I have days where I struggle with heartache for you, which I know is completely nothing in comparison to what you endure.  I cry.  I pray.  I hold you close to me breathing in your goodness.  Then just like a drug I’m surrounded by His grace and I’m thankful.  Thankful for you and our life together and the joy that you bring to everyone you meet.  I’m once again reminded of your perfect purpose here and the heartache subsides.  Knowing this I have to confess my precious child, I can’t say I want you better because you are exactly the way God intended.  You are perfect.

I love you.

Momma

 wonderfully made