Your Blanket

On your Birth-day two years ago I wrapped you in this blanket, knitted by your Jean, flecked with various shades of purple.  It is a large blanket, perfect for wrapping around your shoulders so that it drapes down to my legs, offering warmth to both of us.  In the hospital we took your picture laying on this blanket, arranging the flowers just so behind your beautiful face.  Daddy staged the image just right then e-mailed it to everyone we knew.  Then Facebook.  Then Instagram.  How proud we were!

You were an absolutely perfect baby.  My pictures of those first few weeks include this blanket in every frame.  Covering you in your basinette, draped over us in bed, in your stroller on our first walk down to the bridge at the end of our street.  You were a gentle nurser, kind to me in sleep.  I enjoyed your newborn stage, this joy surprising as the previous two newborn stages left me sleep deprived, fighting post-partum depression.  We woke up together, wrapped ourselves in this purple blanket as your daddy took the big kids to Mother's Day out and preschool, the house quiet.  We laid in bed.  I nursed you.  I rubbed fancy lotion all over your tiny body.  And there was no thought of anything wrong.  No thought at all.  Looking back, how glad I am there was no whisper in my ear saying, "Heartache ahead."  No there was just you, me, a purple blanket, and a room thick with the pleasant fragrance of milk and lotion and skin.  And I loved you without "Rett" in the background, without fear in my head.

We stayed less than 24 hours in the hospital before heading home to our tiny cottage filled with brown moving boxes.  We moved out of our sweet abode ten weeks later.  Your first year a challenge for our family as fellowship and Florida demanded much from all of us.  But you grew and waved bye, played patty cake, said "mama," and stole the hearts of our God-sent neighbors.  And you slept every night under the weight and warmth of soft purple wool.

Today we celebrate your second year of life.  A year marked by another move.  A year marked by a toxic build-up in your brain from proteins unable to do their job.  During this second year of life you stopped playing patty-cake, waving good-bye.  Your vocabulary dwindled from 12 words to one or two spoken infrequently and usually in distress.  I am sorry for what has been taken from you in this second year of life.  What has been taken from our family by a disease that was never a part of God's original plan.  Although I know God will redeem this year for His glory, I still grieve the losses of your second year of life.  

{Photo courtesy of the talented A. Bryan Photo}

But what about the gains?  What about your milestones and your determination?  Well baby girl, you took your first steps during your second year of life!  And a few weeks ago you took 24 small but independent steps.  You gained weight despite your reflux.  You continue to steal the hearts of so many.  You rallied a whole community, teaching them about Rett Syndrome, calling on their support.  Despite your apraxia you continue to have good hand use.  You feed yourself.  You learned to drink from a straw!  Many will not believe it, but you randomly say short sentences and clearly articulated words. For example during physical therapy you exclaimed "Good girl!," after your therapist and I praised you with cheers.  PT as my witness!!! You said a phrase!  We cheered.  We laughed.  We were surprised.  You said "ribbit" the other day.  Clear as can be when the speech therapist gave you a rubber frog.  It is all up there.  And this is both exciting and petrifying.  Are we doing enough for you?

Lu - what can I say about your personality?  What can I say about your two year old like and dislikes? Well...... You LOVE your baby doll.  Not all baby dolls.  Just the African American one that talks back to you.  You kiss her.  You press her chest to hear her talk.  You would like to hug her but this is difficult for you.  You say "baby," one of your few words left.  Then there is bunny.  Oh bunny!  Your love for him is a funny mix of adoration, need, and abuse.  He is your comforter and your object of biting when your sensory system is on overload.  He is your sweet companion in the night as you use his ear as a pacifier.  You do something with bunny and baby that causes my heart to sing, an act that is a testimony to your intelligence and your sensitivity.  When we give you bunny or baby or really any stuffed animal you find interesting, you grab the object, turn it around if needed, and look directly into it's eyes.  You pause there looking at the eyes of the doll/animal before planting a kiss or a bite (if it's bunny).  You seek out the eyes.  You are relational and this is your beautiful strength.

You sing. And my heart sings too...

Other likes.... BELLA.  She is your dear friend and companion.  Our gentle pound dog has become a service dog.  You pull to stand using her back.  Bella patiently allows you, standing completely still.  You pat her.  You kiss her and sometimes your kisses are bites (hello apraxia) but Bella hardly protests. Bella is officially the best dog ever.  She has my heart and a place on the couch.  Always and forever.

Then there is Elmo.  Elmo and only Elmo.  Played on repeat in the car.  I want to grab Elmo's furry face and plant a kiss for he makes travel with you bearable.  And he makes you smile the biggest smile.  Your Daddy and I love to watch you watching Elmo. 

How about your brother and sister?  They are your greatest champions.  Your therapy partners.  Your encouragers.  They are patient with your screams and frustrations.  They are eager to help.  You bring out the best in both of them.  And you work hard for them.  Here is a game you and your big sister play.  It is good for your balance, your strength, and your walking.  It may not be your typical sister relationship but it is all that is good with humanity.....

While many two year olds are heading off to Mother's Day Out for the first time you are headed to therapy each day.  You attend the Bell Center two hours, two days a week.  At first this setting was overwhelming but you are a champion and are adjusting.  Then there is private therapy - physical therapy, speech therapy, and ABA therapy - multiple times a week.  Then there is Early Intervention Therapy - occupational therapy, physical therapy, speech therapy, multiple times a week.  Some weeks include up to 12 hours of therapy.  For many of them you sit in a Rifton chair with a tray for a solid hour and although you are playing "games," I grieve that you are not able to be outdoors exploring, climbing, running.  

Your brain is not wired to enjoy many of the things other children your age enjoy, so I spend great mental energy trying to figure out those things that give you pleasure.  Today on your 2 year old birthday, these include family, Elmo, bunny, Bella, spaghetti, your babysitters, Nutella, your therapists, baby, and of course, your purple blanket.  

I am not sure what this next year will bring for you, baby girl.  Amongst the gains in your 3rd year of life there will surely be losses.  Will you always be able to reach for bunny, find his ear and place it in your mouth?  The fine motor skills needed for this simple task are overwhelming.  Will you occasionally continue to say Mama?  Will your legs continue to support your weight, coordinate together in walking?  Will we find a good way to help you communicate?  God has not revealed these answers quite yet, baby girl.  So, I will walk in faith and peace and joy because Christ and Christ alone gives me these.

I will not grieve loss until loss is apparent.  I will not fear tomorrow because tomorrow is in His hands.  I will not say, "but I cannot" because He can.  And on this 2nd birthday He loves you more than even I do.  His eye is on the sparrow and on the little girl resting underneath the purple blanket.  His eye is on you and you are precious in His sight.

Our scripture for you during your 3rd year of life:

"Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." Hebrews 4:16

Give What They Cannot - Part 3 of 3

Imagine for a moment having your hands tied in front of you, your feet tied at the ankles and your mouth covered with duct tape. It's the stuff of horror movies. No? Yet this is a picture of how girls with Rett Syndrome must feel. Or maybe they feel as though they are fighting their way through a thick viscous substance that makes every movement a battle to push forward, leaving them disoriented and cloudy.  Girls ,and a handful of boys, with an inability to move their limbs in a purposeful way. Loss of hand function and loss of speech. Beautiful words, sentiments, feelings trapped in a mouth that will not let them out. Feeling happy? No words. Feeling sad? No words. Feeling hurt, angry, exhausted? No words.  Just your eyes.  And wow, do those eyes pack a punch....

 But you - the readers of this blog.  You most likely have words. You have fingers that work and legs that move as you will. What can you do for those less blessed? 

Tell others about Rett Syndrome. Educate people about other disabilities you have encountered.  Use your mouth with its ability to articulate complicated sounds.  String those sounds into words then make sentences that go on forever as you educate and impassion others.  People need to know so when they encounter a "Luisa" they understand that despite her physical limitations she hears, she understands, she desires to communicate.  Knowledge leads undiagnosed families to a place of help and community.  People need to know because their eyes should not always look away.  Did you know that Rett Syndrome is the leading cause of severe disability in girls?  (www.girlpower2cure.com).  Yet many of us have never heard of it.  Maybe if we spread enough awareness more people will not look away in fear and discomfort at the girl in a wheelchair with hands that never seem to stop their complicated dance. 

Share this post and this post and this post with one simple click because you can look at a button and press it without having to will your fingers in a slow, laborsome process. Share www.rettsyndrome.org.  Share so people will understand.

Walk with your beautiful, functioning legs in a Strollathon that supports the International Rett Syndrome Foundation (IRSF). If you earn a wage will you support those girls who cannot, by giving to the Strollathon? If they could give to their own cure they would.  Want to know why it's called a Strollathon?  Because many of our girls cannot walk.  So mommas and daddies and grandparents will stroll behind them, pushing their wheelchairs or strollers.  We will dress them up in purple and bows and we will feel proud and happy because we love them so.  Will you come along too?  Luisa and I are joining TEAM LUISA at the Strollathon on September 27th in San Antonio TX.  Wanna stroll with us?  Please come!  Wanna see Luisa?  Please come!  She will smile at you but she will not say, "Hi," with anything but her bright eyes.  They are enough though.  You will see.... Donate to the Strollathon here.

Here's another idea:  buy lemonade and drink it with your mouth that knows how to swallow and not drool. Most likely you are able to sip from a straw.  Our lemonade stand will have paper striped vintage straws and Luisa knows how to drink from one!!!  Come see her perform this feat, one of many I used to take for granted.  Vincent and Sophia will be serving lemonade in honor of their sister on Saturday September 20th from 10- 2.  UPS is donating flyers and yard signs and banners.  Zoes will provide Limeade and Publix and Piggly Wiggly, lemonade.  Party Time of Vestavia is donating a BOUNCY HOUSE!!!! Their generosity touches my heart.  Come to our stand and bounce and drink lemonade and make a difference.   100% of proceeds go to the International Rett Syndrome Foundation.  Busy that day but still want to support our lemonade stand?  Click here and donate online.

Live in Birmingham and want a fun night out?  Join us at the Raise the Roof for Rett Gala benefiting the Suki Foundation on November 1st at 6 pm.  The Suki Foundation supports local research through Children's of Alabama.  Read more about the event and buy tickets here.  Remember the wonderful Rett Clinic I've been telling you about here in Birmingham?  Well the Suki foundation works to make sure it stays here and for that I am most grateful.

Those who knew me "before" diagnosis will find this post rather odd.  I've never been one to solicit funds or support of any kind.  Honestly I'm quite uncomfortable asking people for things.  But I'm on fire for Rett Syndrome research.  Why?  Because it is something I can DO!!  When you walk into a doctor's office, receive a devastating diagnosis, and then are told, "There are a few more tests we will need to run - an electrocardiogram, an EEG every year, blood work.  These will help us manage any serious symptoms."  But her silence?  Her inability to walk?  Her difficulty in kissing her mother without biting?  Her inability to hold on to a swing or ride-on tricycle?  Her inability to grow brain mass the way her typical peers do?  Her challenges in playing with her siblings?  Well there's nothing we can do about that.  So go home and manage a few of the symptoms as best you can.  And envision wheelchairs, and computers that will speak for her and diapers and a frustrated little girl.  Envision these things with no cure.  NO THANK YOU.  I will not.  I will pray.  I will walk.  I will buy lemonade for the same price or more than the latte I buy everyday.  I will click on DONATE because I know there are scientists working hard to find the cure.  And I know they are making advances.  I want to see her walk and talk and use her hands.  Raising funds for research is something I can DO, with God's grace and favor, to make this happen.

And if lemonade and Strollathons are not your thing?  Will you pray for these girls and the scientists in labs 9-5 looking at genes and mice and wringing hands?  It's funny.  When I pray for the scientists I envision them in my head.  I pray for the scientists who make a breakthrough.  I pray they will be believers in Jesus Christ and will know that it is His hand that has given favor in the lab. 

How about special needs children who do not have Rett Syndrome?  Do you know any?  "The least of these" are everywhere.  Down Syndrome.  Rare genetic conditions.  Undiagnosed.  Epilepsy.  Cerebral Palsy.  Autism.  Maybe you could bless a mother's heart and get down on the level of that special needs child and look in their eyes and say hello?  Will you say their name and smile and tell the mother something you see in their child?  Not she looks pretty or her hair is so nice.  But instead, she is smiling!  Wow, I can see her personality!  She is God's little one.  I am so glad I know her.  I wonder what she is thinking?  I remember when she was born.  You are uncomfortable.  We get it but we need you to see them.  We are afraid our children will be ignored and unseen because of your fear, uncertainty, and sadness at seeing their brokenness.  See a wheelchair in your neighborhood?  Bring a meal.  Help with the other children.  I can speak from personal experience, this is a blessing unable to be measured.  This is God's hands and feet.  This is His kingdom on earth.

This last post was a post of doing.  Of walking, drinking lemonade, donating, praying, speaking, sharing, DOING.  Luisa cannot DO many things but I can.  I will.  Join me?

These parents and families express it better than I ever will.  

Fear and Hope - Part 2 of 3

Today is a difficult post.  Difficult because there are no hard absolutes in predicting how Rett Syndrome will progress in each girl.   Difficult in that research and genetic discoveries are ongoing, always changing the way we look at and treat Rett Syndrome.  Difficult because this post highlights two emotions at opposite poles: hope and fear. 

The Course (the fear)

Historically, scientists used 4 stages to describe the course of Rett Syndrome. This staging is now considered out of date and Dr. Percy (our Rett Specialist) encouraged us not to dwell on "staging." Girls progress through this disease in very different ways. 

The general course includes typical development with no signs of anything wrong for the first 6 months of life.  Our Luisa developed typically until around 12 months of age. She crawled a little late and before crawling on all fours, she rolled around the house. I found this odd and perhaps concerning.  It was at 16 months when she was not pulling to stand that red flags started waving and I called Early Intervention for assessment.

 Next the girls go through a period of stagnation in development. Luisa definitely stopped meeting developmental milestones around 14 months of age. It was as if she was stuck. During this time girls will often go through a period of withdrawl and will display autistic-like characteristics. Luisa withdrew from us in the Spring. Although she maintained eye contact and social smiling, she no longer wanted to be held and did not seek out reciprocal activities such as reading together. I am so very very thankful this has passed for Luisa. I am thankful God has granted us a sweet, mutual relationship over the last 5 months. 

The "fear" mentioned in the title?  The next stage is Regression.  Just the word makes one fearful.  I am learning, though, that there are no absolutes in this disease and while one girl may have a dramatic regression stage, another will lose skills in only one area while continuing to make small gains in another area.  The regression stage can be sudden or gradual. Girls may lose previously acquired skills, such as talking, vocalizations, crawling, and/or walking. During this stage a girl's hand function and fine motor skills decline and stereotyped hand movements begin.  Regression can occur at any point or over a course of time until they are 3 1/2 years old.  At or around this age, girls plateau.  This plateau will last a number of years -- for many girls most of their lives. During this time girls may learn back previously lost skills or may learn new skills. Later in life, girls go through a period of motor deterioration where scoliosis might take over and many girls who could previously walk lose that ability. During this last stage cognitive, social, and communication skills do not decline.

Again, it is hard to say how Luisa will progress through these "stages." We've met girls who when toddlers, could walk and run then woke up one day and could no longer stand up.  Then there are girls who never learn to walk, and girls who learn as late as eight years of age.  Many girls seem to have an "overnight" loss of hand function, while others lose these skills gradually over time. One mother of an older girl with Rett Syndrome said her daughter never went through a clear regression. Her daughter showed global developmental delays as an infant/toddler but has made slow gains over the years. This last scenario seems easier on the heart and is currently my prayer for Luisa.  Common among all girls is lack of speech.  Very few retain the ability to communicate verbally.

     

As for Luisa, we can pinpoint stagnation and withdrawal last Spring. She definitely has shown regression in her speech skills as she once said 10-12 words, and now has 3 - momma, bunny, and baby. No sweeter words have ever been spoken by a little girl. I love these three words. Occasionally Luisa will say "Daddy."  I've never seen Tony jump so quickly.  

A few weeks ago we noticed some decline in Luisa's gross motor skills. She became uncoordinated in her assisted walking, and when sitting up she sometimes had to brace herself to keep from falling over.  She no longer climbed up the whole flight of stairs. This lasted for about two weeks until last week when her coordination and weight bearing improved during walking tasks.  I try to breathe normally and remember that just because she is having an "off" week doesn't mean she's about to lose everything. For several weeks we were forced to used a walker during physical therapy.  Last week we were back to minimally assisted walking.  Many describe Rett Syndrome as a rollercoaster.  Yes.  Yes, that is a good description.

The Genetics

I will not attempt to explain the genetics.  Instead here is a readable article that gives a brief overview of Rett genetics:

Rett Syndrome:  Why Girls?

The short answer to, "Is Rett Syndrome genetic?" - YES because there is a mutation on the MECP-2 gene that then leads to Rett Syndrome. "Does Rett Syndrome run in families?" Not usually. The majority of cases are spontaneous mutations that can occur in any family at any time. As sited in the article linked above, Rett Syndrome is "genetic roulette." 

In rare instances the mother and father can be carriers of the mutation and in that case there is genetic pre-disposition to having a child with Rett Syndrome.  This is only the case in a minority of families.

The Research (the hope)

Since discovering that MECP-2 mutations cause Rett Syndrome, scientists have replicated this syndrome in mice. Then after many a Gala, Lemonade Stand, and Strollathon and along with research grants, and generous "gifts," brilliant scientists developed a drug with one goal - Reversing Rett Syndrome.

After being injected with this "miracle" drug, medical mice no longer sat for hours and wrung their hands.  They learned to walk normally.  They appeared less anxious. Oh wonderful scientists!!! 

There are several drugs and therapies in the human phase of trial.  Older girls with Rett Syndrome are boarding planes with their families and flying to centers in cities like Boston and Houston to be given either a placebo or an experimental drug.  To undergo tests and blood samples and shots.  How brave.  What hope these families bring to the rest of us!

Want to see video of the mice before and after this "miracle" drug?  Want to read about several advances in Rett Syndrome research?  Click the link below and scroll down. 

Mice, Videos, and Research

An experienced Rett Syndrome mother recently told me that in today's world a Rett Syndrome diagnosis is devastating for a family but someday a mother and father will breath a sigh of relief when their daughter is diagnosed.  Rett Syndrome?  Oh, OK!   There's a cure for that.  Hope.  Hope.  Hope....

******

Recently I told Tony that I was in denial.  Denial about Rett Syndrome's "typical course," (a misnomer really because the course is anything but typical).  I want to believe Luisa will not lose anymore hard-won skills.  She stands up and climbs stairs and says "Momma!" and grabs my hand on which to plant one of her own unique kisses.  She laughs.  She crawls over, reaches up for her bunny, and pulls it out of her bed.  She can hold her cup.  She does these things and my heart soars.  And I feel blessed and happy and hopeful. 

But for Luisa's tomorrow, these things are not guaranteed.

Rett parents and other special needs parents face everyday a fundamental truth mothers and fathers deny about their healthy and typically developing children (I deny about Sophia and Vincent).  We have no control over our child's tomorrow.  Their health.  Their behavior.  Their choices.  Really we have no control.  Influence, yes.  Control, no.  Downer?  Well maybe.  Truth.  Most definitely.

So I think I will give Luisa's tomorrow to Him.  Sophia's tomorrow.  Vincent's tomorrow. And if the grief should hit hard and Luisa should lose much I will trust Him with the why.  It is not my burden to bear.  And I will say, through clenched teeth and stubbornness "He is good."  He is good.  He IS good.  Give me the strength to say it God.  You are good.  You ARE good.

This is truth:

Many, O Lord my God, are the wonders You have done.... too many to declare!

Psalm 40:5

Yes.  Too many to declare!  But here are two.  They are wonders.  And He is good....

*******

Oh Lord give us peace in this Rett Syndrome "course," and hope for the "cure,"  And please, a miracle.  A miracle for our girls. 

If you are a "fix it" kinda person, a "let's do something about it," kinda person then you will like the last post in this series, Part 3 of 3...

Finding Joy

Today Vincent started Kindergarten.  And just like that the pre-school, toddler years are over.  Just like that, he finds himself in a busy classroom decorated with bees and word walls and rules and art.  I find myself in a quite house, something I craved all summer but now find to be too much. 

He was proud of himself, not sad, not nervous when I dropped him off at school.  He feels big and important like his sister.  Elementary schools all over town invite Kindergarten parents to a "Sip and Sob," an opportunity to meet together and commiserate this rite of passage, this ending and beginning for our babies now grown.  Since the social is titled, "Sip and Sob" not "Sip and Weep an Ugly Cry," I decide to head for the van.  Luisa in tow, I buckle her in, climb in the front seat and allow the tears to start rolling.  I'm surprised at the whimper coming from my lips.  It's been bottled up and now I let it go. 

These are not tears limited to my boy all grown up and brave.  These are tears for a closing of a chapter.  These are tears because our family has a new reality.  July 3rd forever changed us and right now I just need to grieve the change.  I need to grieve the loss of our family as it was "before."  I spill tears in an elementary parking lot for a  diagnosis 5 weeks new.  For a little girl who will not experience "typical" preschool years and a family now radically shifted. 

I cry over our little cottage in Homewood, Alabama.  The 3 bedroom, tiny house bursting with so many memories.  I sit in the parking lot and remember cheap, blue swimming pools filled with frigid hose water.  One summer we splurged for the pool with a slide.  It offered more fun than a day spent at an amusement park.  Giggles and squeals and a backyard muddy and squishy with so much water.  Pulling the tiny kiddie slide and placing its bottom directly into the pool then running the hose down the slide so the kiddos could slide fast into the water.  Toddlers in kiddie pools and sprinklers are joy and energy and discovery and laughing. 

Sophia is 3 1/2 and Vincent is 2  years old in this video.  For those of no blood relation, this video might bore you as it is quite long.  Yet it is a miraculous video!  Kicking legs in water, crouching then standing on a slide, so MANY words.  "Get away you rotten shovel!"

 

I will miss mornings spent watching Sesame Street, fighting their chubby little fingers for a taste of Cherrios in the bowl placed on my lap.  Resting my cheek right there on the top of their heads.  Wondering contently, "What will we do today?"  A schedule open and blessedly void of "appointments."

Vincent at 2 years old.  Again this is quite long but again, the talking and the movement and the joy....

Walks to Rainbow bridge and hours upon hours upon hours exploring the neighborhood.  Stopping for lattes, swinging at the park, or maybe the library for books we will balance on top of the stroller, treasures to open and read before bed.  Trips to Edgewood Creamery where Tony likes to say we paid a 2nd mortgage during residency.  Seeing their faces so red and sweaty and full of joy.  Picnics.  So many picnics.  Jumping in the pitiful creek at Overton Park.  Tiny voices talk, talk, talking and shouting Momma!  and Daddy!  and Come get me!  and Can we please? 

Luisa says so little.  I haven't heard "Momma" all week.

Luisa starts her high pitched scream, my signal to wipe the tears, start the car, and get her home as soon as possible. I pull out of the parking lot and turn on the DVD player, with the hope it will soothe her screeching. It works about half the time. It didn't work today.  I need to stop for groceries before heading home. Life isn't put on hold for a heart that grieves. We must power on, especially as mothers.

In the store parking lot I scroll through my Facebook feed and see links to world atrocities and I feel guilt for this sadness over Kindergarten. But I decide to allow myself tears this morning because I'm pretty sure Jesus wouldn't tell me to get a grip. He knows my heart, I might as well give it to Him, grief and all.  I walk into the grocery store armed with snacks.  Luisa is content as I fill the cart with pre-packaged cookies and crackers for this week's lunchboxes.  We stand in the check-out as a little boy calls out to me from behind, "Hi!"  He smiles as if we are the best of friends.  I smile and ask the mother, "How old is he?" The torturous question I feel compelled to ask any mother with a child near Luisa's age.  "20 months," she replies.  "And yours?"  "22."  I conceal the tears by bending down to retrieve the diapers from under the cart.  Why do I do that to myself?  Ask their age? 

When we get home I make a rather irrational decision to let Cookie Kitty inside (Tony and I are both allergic).  I like to watch Luisa with him.  She squeals in delight and pulls at him.  Sometimes she will even say "ka."  Cookie lies lazy on the floor, allowing the torment until I relieve him with a bowl of milk in the garage.

I'm only 5 weeks into a diagnosis for our little girl.  Yet the grief is 8 months old.  In January Luisa's baby friends were learning to walk while she sat content on the floor, no desire, no movement to pull to stand.   A mother's heart knows.  So 8 months in I am learning how to find joy in our "new normal."  Today I said goodbye to the spontaneity that defined Sophia and Vincent's preschool years.  Luisa's preschool days will be filled with therapy after therapy.  Therapy that causes much crying, frustration, and grit for Luisa.  During her preschool years there will be shorter trips to the zoo, as she loses interest quickly.  More time at home.  And while there will be many toys and trips similar to the "typical" preschool experience, Luisa will process and interact differently because Retts makes it hard for her to interpret and participate in her environment.  Despite this "new normal," I know a new joy will be found.  I know it will....

"Weeping may remain for a night, but rejoicing comes in the morning." Psalm 30:5b

Right now joy looks a lot like purpose.  Splurging on fancy baby lotion because I want her therapists to think she smells sweet.  Joy looks a lot like rubbing lotion into her legs and on her neck so that the beat, beat, beat of her heart releases the pleasant fragrance.  Joy is choosing new hairbows and clothes and practicing her hair so I can get it just right.  Joy looks like tasting the smoothies I so carefully researched and finding that YES! it tastes great.  Joy is watching her eat a whole pouch of these homemade smoothies, knowing the calories will add to her body the fat that is lacking.  Joy is knowing the vitamins are in there and maybe, maybe I can heal her in some way....  Joy is looking into her blue eyes and feeling a deep sense of purpose.  As she nears two she is not growing more independent, not walking, not able to communicate her needs.  While this brings me deep sadness, it also brings me great purpose.  Joy is finding ways to meet her needs...
 
Joy is seeing the young man serving at the Southeastern Retts Conference welcome table .  He stood out for his eagerness to help all of us find our packets and seats.  I found out later that he is the older brother of one of the adult girls with Retts.  His love for his sister was apparent in his service and the hugs I saw him give her on the side.  Joy is knowing that although they did not choose it, Sophia and Vincent are gifted with great purpose and an understanding of the world few are afforded.

Joy is knowing that because I am His and Luisa is His, somehow this Rett journey will be used for His purposes and glory (Romans 8:28).  What a great day in heaven when we will understand it.

Joy looks a lot like perspective.  I am not facing the decisions and the horror and the tragedy found on the news and our Facebook feeds and in our cities.  Even on the Retts journey, perspective brings joy.  Luisa is using her hands right now.  And standing.  And is seizure free. Someday that may not be her story.  But today it is.  So I will take joy in this. 

Joy is being granted days, months, and years of this kind of happiness.  To have expierenced this kind of joy is a gift many are not afforded and I will be thankful:

I will not overlook past blessings because I am grieving today's losses.

Joy looks a lot like hope.  Joy is hearing stories of 10 year old girls with Retts fully included and making A's in English because they have the communication tools in place to let the world know how much is upstairs in their beautiful but broken brains.  Joy is therapy sessions like this:

when Luisa shows us that she knows what a key is.  A key!!!!  We will celebrate each milestone with fervor and deep gratitude.

Joy looks like Rett's mice who after a miracle injection no longer wring their hands and start walking normally.  Joy looks like human trials and brave families paving the way for a cure for all our girls.  Joy looks like Strollerthons and Lemonade Stands and fundraisers where people join together in support and a cause that will change thousands.

And this afternoon?  Joy will be my boy climbing in the car, a brain unbroken and full of new knowledge.  Stories of new friends.  And later tonight he will sleep deep because he ran and jumped and climbed at recess.  What a miracle.  What a joy.

Time for a new normal.  Time for finding new joy.

courtesy A Bryan photo

 

"He put a new song in my mouth, a hymn of praise to our God.  Many will see and fear and put their trust in the Lord." Psalm 40:3



The Next Day

What do you do the day after your child is diagnosed with Rett Syndrome?  What do you do the next day when you have crossed over to where though some things will stay the same, big changes are inevitable?

Everything was on hold during the two weeks between receiving Luisa's genetic results and the actual appointment at the Rett Clinic.  So the day after her official diagnosis I woke up determined to get things back in order.  I cleaned the house, put away every stray Lego, wiped down every counter.  Weeks of toys, papers, clothes, and shoes were piled at the bottom of the stairs.  They were all put away the day after her diagnosis.  It was as if I woke up with the realization I didn't have it together enough for this colossal task.  I needed to be more organized, neater, more put together to face the challenges of Luisa's diagnosis.  The next day wasn't rational but it was real.

After the kids went down, Tony and I organized the file cabinet, discussed savings plans, and bills.  We started an expandable file folder for medical records.  I ordered a new diaper bag and wrote down an extensive list of everything that needed to go inside it.  I'm not a "put together," mother in terms of having all the proper baby/toddler accoutrements in my diaper bag.  Heck, I leave the diaper bag in the car more often than I put it in the stroller.  It's a joke with my fellow mom friends.  I rely on them for the snacks and wipes, they rely on me to handle the chaos.  But now it's as if I've been thrown into the wilderness and the more prepared I can be, the greater chance of survival.  So we are busy planning, organizing, setting up appointments and therapies; trying to get our ducks in a row.  This makes me smile, Luisa LOVES ducks.  I will add one to the diaper bag list.  Yes, I will. 

And Luisa?  Well, Luisa was the same on July 4th as she was on July 2nd (the day before her diagnosis).  She is working hard at learning to walk and can now cruise on furniture.  She wears ankle braces and we are ordering higher calf braces to help with hyperextension and stability.  She is frustrated by her inability to communicate but gets her point across by screaming a monotone scream while staring directly at what she wants.  Luisa has a few words, "momma" used most frequently.  We think she is starting to lose some hand control  Cup throwing, food throwing, toy throwing is not behavioral but rather her inability to maintain control as she tries to pick up or put down objects.  She is still able to feed herself but we are watchful as to how much she is actually eating.  Her hands clap at midline, grab her shirt at midline, sometimes find their way into her mouth.  It hurts my heart but I love her so, so I will kiss her cheek for now, whisper I love her in her ear.  I'm afraid the next day her hands won't stop moving and the next day she won't be able to use them at all.  But what good is worry for the next day?  It's too paralyzing.

 

Luisa is delightful and joyful and playful in a way she wasn't last Spring.  It was as if she left us for a few months and now she is back.  So, I find myself crawling in the crib with her (it's one sturdy crib :)) and we play together.  She kisses me.  We laugh.  She turns on her crib music and turns the pages in her book.  I should make a million calls and yet I find myself on the floor, stroking her hair and playing with her baby doll.  For I know, deep down, the next day is not guaranteed.  I want to soak her in while she's so interactive and mobile.  Maybe she will be the same way the next day but maybe not.  Rett's has been described as a thief, a rollercoaster ride.  I'm not sure what to think, no guarantees can be made.

 The girls I see online vary greatly in their abilities, access and intensity of therapy a determining factor I'm sure, along with their type of genetic mutation.  Currently Luisa receives Occupational, Physical, and Speech therapies through Early Intervention.  They come to the house for a total of 5 hours of therapy a month.  We are supplementing this therapy with one hour at The Bell Center and one hour of private physical therapy a week.  In the Fall Luisa will attend the Bell Center 4 days a week for over an hour and half a day, along with continuing her private therapies and early intervention therapies.  We are also looking into ABA for Luisa.  Just typing this long list makes my head spin.  Luisa resists therapy, it tires her out, and the tasks are difficult.  She cries and screams but we must persist.  It hurts my heart though.  She will have to work hard for every little accomplishment.  Did you know "Luisa" means "Famed Warrior?"  Yes, because of Rett Syndrome she will have to be a warrior today and the next day and the next day and the next day. 

In case you are wondering about the big kids, here are a few pictures from their summer adventures.  Our church has helped with watching Sophia and Vincent, feeding them :), and encouraging them.  Sophia prays at dinner that God will take away her little sister's Rett Syndrome.  As I type this Sophia has filled a cardboard box full of Luisa's stuffed animals and is giving Luisa a ride in the box all around the house.  Vincent kisses Luisa and does silly dances when she's fussy.  Luisa says "bubba," occassionally and you can almost see Vincent's chest puff up with pride. 

We are not sure what the next day will look like for Luisa, but through the prayers of so many we have found peace in this unknown. We are meeting families in our area who have daughters with Rett Syndrome. They have been loving and supportive and helpful with finding therapists. The online Rett community is one big family and we have entered in nervous but ready to learn. The tender words of those who have walked this path have provided strength and HOPE. The thoughtful words, cards, messages, and meals from so many people has ministered to our family. We love you so very much. Thank you for loving on us.

Luisa needs our prayers.  I'm a believer in specific prayer requests so here are a few: 

1.  Luisa will walk.  Tony promises literal fireworks on the day she takes her first steps.  I will be sure to take video of the firework celebration as she appears to be very close....

2.  Luisa will maintain use of her hands.

3.  We will stay on top of her nutrition.  Girls with Rett Syndrome have difficulty with vitamin aborption, GI issues, swallowing difficulties, and self-feeding challenges.  We are treating Luisa for reflux and her swallowing seems to be improving but we are asking God's mercy in this area.

4.  As parents, Tony and I will have wisdom to achieve balance in our home, with eachother, and with our children.  I'm not able to put into words how complicated this feels at times.

5.  We will find the right therapists/services for Luisa.

6.  A cure for all the girls/boys and women with Rett Syndrome.  You would not believe how beautiful and amazing these families are and how they FIGHT for their girls...

The next day is His.  I'm not sure my heart can handle the next day but I know He can.

"Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Every day has enough trouble of its own."  Matthew 6:34



 

Peas and Carrots

I tap on my computer Luisa's six month update while she is well on her way to 8 months old.  Sweet 3rd baby, I wrote updates on your brother and sister almost monthly as babies.  When you look back someday, please do not hold it against me.  My lack of posts recording your milestones and temperament does not mean I treasure you any less.  It is a reflection of this Florida year.  A reflection of a mommy with 3 children, 5 and under.  Of time spent cleaning, cooking, instructing, and playing rather then writing, typing, and photoshopping.  Let's put the excuses aside now and talk about you, little baby.  Little Luisa Ray.

Me and you, you and me, we're like peas and carrots, Luisa.  I frequently sing you this diddy "You're my pea and I'm your carrot.  You're my pea and I'm your carrot.  You're my pea and I'm your carrot.  I'm with you every day, day, day."  You smile and laugh and even though I'm not quite carrot sized, this song describes us well.  You are a peaceful baby, happy to go with me anywhere.  You have yet to take too kindly to the bottle and so this "togetherness" is a necessity but I don't mind.  We run errands together, visit brother and sister at school, grocery shop, go on dates with Daddy and to his department parties at fancy houses.  You traveled with Daddy and Mommy to find a house in Florida and you will be traveling with us again in June to find another house in Alabama.  On Fridays you go with me to the coffee shop, where you play in your travel bed as I drink my coffee slowly.  You are almost the mascot there as the baristas make on over you.  You smile at strangers and then shyly bury your head in my shoulder.  "She's like a doll!" they all say.

 

 

So much has happened in your short little life.  You moved to Florida, endured RSV and pneumonia, took an airplane trip to Texas for Uncle Peter's wedding, and survived your first (and hopefully LAST) double ear infections.  You are meeting your milestones right on time and are currently rolling over, trying to crawl, and babbling up a storm.  You smiled early, not surprising given your disposition.  At 7 months, we are almost certain you are saying "Mama!" The speech therapist in me is skeptical as this is way too early to have your first word.  Nevertheless, you say "mamama" when you are upset or when you see me pass by in the hallway.

 

 You are enjoying baby food, with bananas being your absolute favorite.  I make your baby food with this awesome gadget.  I do so, not to make a statement on processed foods or organic produce, but rather because it brings me joy.  I slip dabs of butter in your peas and a pinches of brown sugar in your sweet potatoes and carrots.  When you gobble it up, my heart swells with pride.

 Your hair is growing redder and your eyebrows are strawberry blond.  I often wonder what it will look like when you are Sophia's age.  Unlike your sister and brother, your eyes have stayed blue.  As a result, Daddy likes to sing you, "Blue Eyes Cryin in the Rain," by Willie Nelson.  {That Daddy and his Johnny Cash and Willie Nelson!!!}  When you are happy or excited, you work your feet in circles to show your pleasure.  It's ever so precious.  Take a look:

 

Your take great delight in your big brother and sister.  When your Daddy comes home your feet kick and your hands reach for his face.  You love your Honey Bunny lovie and riding in your floatie in the pool.  Your feet and legs kick, kick, kick in the pool.

You are baby, though, and as such you have exercised your right to worry your mother on a few occasions.  You decided it would be nice to sleep in your tiny bassinet until 6 months of age.  Every thump in the night sent your mother dashing to your door to make sure you had not fallen out.  A new crib mattress later and a few rolled up towels under the mattress to elevate the head and you are sleeping in your crib just fine now.  When you are tired you attack your eyes and nose with your fingernails, rubbing, rubbing, and scratching if your nails are too long.  And finally there are your "fits," as your Daddy and I like to call them.  When you were born, right after the doctor unwrapped the cord from your neck and the nurses suctioned your lungs free from meconium, you wailed.  And didn't stop wailing for the next 45 minutes.  No amount of singing, talking, or nursing made you stop.  Much to our relief, we soon discovered your personality to be markedly free of "fussing."  Strangers remark on your happy demeanor and we are grateful beyond words for your easy-going temperament.  But there are times, like the first hour after your birth, when you are hurt, or hungry, or over-tired and you cry inconsolably.  Your cries are so intense that we frantically search your body for bug bites or pinched skin.  Then we remember.  You are letting us know, in your Luisa way, that things are not o.kay.  I wonder if tears will come quickly and loudly as you grow?

Luisa, you are indeed my little pea, your face round with cheeks plump and chewable.  I'm your carrot because we go so well together.  I love you little baby!

Need a Baby Fix?

This video contains all the baby goodness one heart can handle.  Yawning.  Cooing.  Smiling. And it ends with a few strange baby sounds that would trouble any mother's heart.  (Don't worry, she was just gagging on a little spit-up....)

Luisa is precious and sweet beyond words and has slept 8 hours the last 3 nights!  She is good to her momma in ways too numerable to recount in this short post.

How I've longed to blog lately.  But, alas, I've stayed busy with this:

And this:

And this: 

Until we are settled in Florida this January, short posts will have to do....

Luchadors

Tony recently traveled to San Diego for the annual American Association of Oral and Maxillofacial Surgeons convention.  While there he picked up a few souvenirs for the kiddos and me.  When he ran across these Luchador masks, he immediately bargained down the price in order to bring them home to Vincent.

For you see, frequently during the week the coffee table is cleared from the living room and the red carpet becomes a wrestling ring.  Fortunately, we have a more than willing female to referee the matches and the mother sits back and enjoys the entertainment (when I'm not bracing myself for injury of my youngest). 

The masks have upped the game and the giggles are constant.  Sophia enjoys declaring the "winner" and creating funny names for the contestants ("Tougherbat!").  I enjoy watching safely from the sidelines.  Just check out the fun....