A Year To Remember

I think the year Beckett turned two was probably the most stressful since we learned of his milestone delays.  We had no idea that the financial burden of therapy, doctors visits and prosthetics would have on our family.  Our pediatrician referred Beckett to the Blue Bird Clinic at Texas Children's Hospital to see another pediatric neurologist.  The doctor called and expedited an appointment for us.  Instead of the six month to nine month wait he got us an appointment for about 3 months out.  In the meantime, we kept chugging along, going to therapy and working with him at home.  He was making very little progress and it seemed that new things were coming at a snails pace.   At times I found myself crying myself to sleep, praying to God that He would heal my little boy.  Some nights I would get maybe 3 - 4 hours of sleep and going to work the next day running on "fumes". The emotional toll was also showing at home and at work. I needed answers! I couldn't wait to get into an appointment to see a doctor who could tell us what to expect an where to go from here. 

After a wait that seemed like forever, we finally got into see a doctor at the Blue Bird Clinic.  It was a relief just to be in the waiting room.  But that feeling would soon fade into worry and more anxiety.  I showed up with my husband, Beckett and Pyper his twin in tow. We then waited in the exam room with two chairs, a patient table and a computer. Trying to keep 2 years old twins occupied for 30 minutes was a challenge in itself.  FINALLY!! A knock at the door!! She peeked in and introduced herself.  Low and behold she wasn't a doctor, she was a Physician's Assistant. Don't get me wrong, I was glad we were in, but disappointed the it wasn't the "neurologist".

 I guess it's selfish and I should be grateful but the frustration of everything had gotten to me.  After the introductions we continued to share our concerns with her.  She was taking details notes and making observations of Beckett while he was fussing to get out of there.  The level anxiety rose as she began to explain that she was going to recommend genetic testing and an MRI under sedation.  Several of the genetic tests she recommended to have done were rare disorders that either caused a child to have a fatal consequences and or one that would cause him to be needing round the clock care for the rest of his life.  Even though she reiterated that these tests were to rule them out, there was no guarantee that he would not have one.  Some of his symptoms were part of these disorders and the question was there that needed to be answered.  The one genetic test I fear most was the Rhett's test.  This genetic disorder caused boys who had this fatal disease, even mildly only lived a life span of 10 years old.  I couldn't imagine my boys mid-life at 5 years old.  The other tests that she had ordered was Fragile -X, along with about 129 genetic metabolic disorders and a chromosomal karyotype.  My husband and I cringed at the thought of how much all these tests were going to run and "go figure" if insurance would ever pay for them. 

We had to wait almost 3 torturous months for the genetic results to come back.  During this time I spent hours upon hours doing research on the Internet.  I was looking for answers that never seemed to come. I would cry at school and cry at home praying for the tests to be normal. We were still waiting to get a MRI.  Beckett was continuously sick with a cold or ear infection.  After about 3 tries to get him to Texas Children's for an MRI, we got him in.  I hated that day too.  He had to be put under anesthesia for an MRI to get a conclusive view of his brain.  I almost passed out when they gave him the drugs that put him under.  My husband was holding him while they administered the drugs.  He fell limp.  I hated watching that.  I had a sick feeling in my stomach watching him be carried away. It was a successful scan and they told us the results would be read in about 3 days. Again the 3 longest days I had in a long time. 

That day finally came, the moment of truth!  We had the results of the genetic testing and the MRI. The PA called us with the results.  She said all the genetics tests were all NORMAL!! I felt my chest fall in relief. She had the neurologist look over his records and some of the best news of hope I had had in a long time.  He said that there was a discrepancy in his MRI. He explained that the myelin, or white matter in his brain was at 50%.  A typical 24 month old has approximately 90%.  Myelin is basically the plastic covering that insulates an electrical wire. This disorder made it difficult for him to make connections.  My heart then fell again. The emotional roller coaster is exhausting, you never know how or what to feel.  The hope then returned when the doctor said that he believed with massive amounts of therapy and lots of patience, he thought that there would be an 85% chance that he would be fully functional by the time he reached the age of  6 or 7.  I bank and pray on that hope everyday.  This is something I haven't forgotten and hoping that this time the doctor's right.  Of course we will see, because there are changes everyday, both good and bad.

Year 2: Future Unknown

The second year of Beckett's life was full of uncertainty. He was now in therapy through ECI (Early Childhood Intervention) and making small steps to improvement with his motor skills. He began walking with a walker that helped him develop his lower body muscles. His therapist was an ex-marine and her demeanor and motivation techniques did wonders with him. He is a stubborn, bull headed little boy and a bit spoiled.  Sometimes I thought she was too tough, but I understand now that was necessary to set an expectation for him to meet.  Just because he was slow, didn't mean he couldn't learn.  Repetitive commands and hand over hand help made him see he could do on his own. 

Besides our concerns of his motor development came concerns of his cognitive development.  He had and occupational therapist and a play therapist that came to work with him on a weekly basis.  They taught him to hold a cup, turn pages of a book, use a crayon and many different type tasks. A normal toddler typically would just pick up by just watching someone or shown how to use these things with ease.  Beckett was not interested in toys or even watching cartoons on television. Most of the time he wondered aimlessly around.  Almost seemed like he was in his own world, investigating what was around him.  I almost thought he was on a different level than some typical children. At least that is what my "gut" said to me.  My husband and I became very concerned about his ability to learn.  Processing a task took him a long time, not just minutes, but days and days of repetitive working at it.  I found my self saying words to him hundreds of times a day.  I think I dreamed about "more", "juice", "milk", "eat", for months. I felt helpless sometimes when he was not getting it.  I just wanted to quit.  I guess God knew what he was doing, because just when I wanted to give up, relief came when he would make sign or say a sound that was close to the word.  He probably only had about 5 words he signed or sounded during his first two years of life.  His frustration level was incredibly high and I felt so helpless.  I was doing all I could and some days I was just spinning my wheels.

I began doing research online and talking to doctors about his condition.  Of course no one had any definite answers.   I struggled with the thoughts of him not ever being a productive independent person in our society.  I worried about who would take care of him if something would happen to me or my husband.  I ask questions like,"Would my older children have to help him if I'm gone? & Would my extended family be able to help provide the therapy he needed if I wasn't here?" I had to let go of those thoughts and believe that God had a plan and I am included in that plan to take care of him. I struggled with depression all the time.  But somehow, someway it was short lived, because Beckett would do something new that would make the hope return and it was going to be ok.

I will never forget an afternoon that gave me much needed hope and a new faith that God does listen to prayer and answers it.  I went to pick up the twins from the daycare, I saw Beckett sitting looking outside the glass door that led to the play ground.  He turned and saw me walk in and smiled a big smile like he usually does.  His teacher and I were not expecting what came next.  He pulled up on the door handle and took a step, not just one but he kept walking all the way across the room to me.  I dropped to my knees crying. I grabbed him and hugged him.  I could not believe that my little boy was walking.  His teacher, Ms. Claudia also broke down and cried. She was also a part of the many people helping him over come his obstacles. The excitement spread through out the building and all of his former teachers came to see him walk.  I was relieved that he was progressing. I knew that after I was praying for months for him to walk that God answered one of my many prayers for him. He walked at 22 months, exactly two months before his 2nd birthday. It was a joy I will never forget. These are the moments that keep me going when I fall into a "rut" of despair.

Our New Normal

Our New Normal

After a year of no "real" sleep and dealing with new situations that arise every day, life wasn't just day by day, it was minute by minute.  Often dealing with the frustration of a child who is unable to communicate is just pure hell.  The constant screaming shatters any semblance of calm.  Frequent breaks to step away for relief are necessary to maintain a sense of mental tranquility.

I kept asking why He allowed this to happen to my little boy.  I was angry at God.  It is a horrible cycle of frustration, anger, guilt, and depression.  Fortunately, I didn’t have the luxury of feeling bad for long because auto pilot would kick in and remind me that I had to determine to get through this and only God could help me do it.  I'm not just saying that because it sounds noble or because it is the "Christian" thing to say.  I truly believe it.  It's just the human side of me forgets sometimes…ok...maybe a lot of the time.  And then I come to my senses, and there He is just waiting for me to depend on His strength. 

I never knew how much patience is needed to raise a special needs child.  My mother used to say, "Don't pray for patience, pray for understanding."  So I did.  I was praying, asking God to help me understand what it was I needed to do to get through this.  Looking back on Beckett's first year was an eye opener…I had learned many small invaluable lessons of life.  The small things you do are really stepping stones to a livable and purposeful life.  To this day I struggle with my purpose.  I'm a proud mom of 5, a wife and a teacher, and still it seems that life throws things at you that you never expected.  In a flash, you can lose the focus of your responsibility to a child who utterly dependent on you.

My purpose changes daily.  To keep up with my child’s ever evolving needs, I am learning sign language, impersonating physical and occupational therapists, and as a result I am far more in tune with the everyday challenges of special needs people.  My compassion and empathy is foremost as I observe those who cannot do for themselves the most menial task.

I tend to come back to a statement that was told to me by a very wise seasoned educator I work for.  As I described some of my daily struggles, she said "Monica, God gives us a new normal on occasion, we must trust Him to get us through it and find ways to modify."  She was right, I keep changing and adjusting to my "New Normal."  Thinking like that helps me get through the hard times and knowing that it's only temporary helps because the next "New Normal" is just around the corner.  Beckett himself has a new normal every day.  Every milestone he makes is his new normal.  We are all on this road together but his path is bumpier than mine.

The second year of Beckett's life was full of uncertainty. He was now in therapy through ECI (Early Childhood Intervention) and making small motor skills improvements. He began using a walker that helps lower body muscles develop. His therapist, an ex-marine, with a demeanor and motivation techniques that do wonders.  He is a stubborn, bull headed little boy and a bit spoiled.   Sometimes I thought she was too tough, but I understand that higher standards are necessary for him to aim towards.  Just because he was slow, didn't mean he couldn't learn.  Repetitive commands and hand-over-hand demonstrate just what he can do on his own.   

With concerns about motor development came concerns about cognitive development.  He had an occupational therapist and a play therapist who worked with him weekly.  They taught him to hold a cup, turn pages of a book, and to use a crayon and other simple motor tasks. A normal toddler typically imitates behavior by watching someone with a toy.  Beckett was not interested in toys or even in watching cartoons on television.  Most of the time he wandered aimlessly around.  It seemed like he was in his own world, indifferent to the physical world he actually inhabited.   He was on a different level than typical children. At least that is what my "gut" was telling me. 

Before long we became concerned about his ability to learn.  Processing a simple task took him a long time.  Not just minutes, but sometimes days of repetition.  To serve as an echo chamber, I would repeat the same word a hundred times a day.  As a result, I think I dreamed about "more" and "juice" and "milk" for months after.  Frustrated and discouraged I often wanted to quit.  But God knew what He was doing because just when I wanted to give up, relief came when Beckett would make a sign or say a sound that was close to the word of the moment.  With effort, after his first two years Beckett had retained about 5 words he signed or sounded.

This required another avenue of cognitive investigation and so began online research and contact with cognitive specialists.  But no one had definite answers.   I struggled with the idea of him not ever being a productive independent person in society.  Who would take care of him if something should happen to my husband or me.  Would he be dependent on my older children?  Would my extended family be able to provide the time and therapy he needed?   I had to let go of those thoughts and believe that God had a plan to take care of him and that I would be included in that plan.  With worries like these, depression was a constant visitor.  But thankfully sadness was short-lived because my brilliant boy would do something unexpectedly encouraging, which would signal a return to hope and promise.  It was going to be ok.

Never will I forget an afternoon that gave much-needed hope and renewed faith that God listens to prayers.  One afternoon, off I went to pick up the twins from daycare, and there was Beckett sitting looking outside the glass door that led to the playground.  He turned and saw me walk in and smiled…a big smile.  He pulled up on the door handle and took a step.  First one step, then another and then another as he kept walking all the way across the room to me.  I dropped to my knees, crying.  I grabbed and hugged him so close.  To see my little boy walking was extraordinary.  His teacher, Ms. Claudia, also wept.  Her sainted efforts were also a part of the many people helping him.  The news and excitement spread throughout the building and all his former teachers came to see The Magnificent Walking Boy.  He was progressing!   After months of prayers God had heeded the call.  Beckett was walking at 22 months, exactly two months before his 2nd birthday.  It was a moment of pure joy that will forever live in my heart.   

These glorious moments – precious few and far between – keep me going when I feel the pull of despair.

The year Beckett turned two was the most stressful since we learned of his handicapped milestones. 

Our pediatrician referred Beckett to the Blue Bird Clinic at Texas Children's Hospital to see another pediatric neurologist.  The doctor expedited an appointment for us.  Instead of the six- to nine-month wait we were seen within three months.  In the meantime, we kept chugging along, going to therapy and working with him at home.  He was making very little progress and it seemed that new skills were coming at a snail’s pace.   At times I cried myself to sleep.  Some nights I would get barely 3 or 4 hours of sleep and then work the next day running on fumes. The emotional toll was also showing at home and at work.  I needed answers!  I was growing impatient with a simple answer to our question that never came.  When will a doctor tell us what to expect in Beckett’s future.   

At long last we got an appointment to see a doctor at the Blue Bird Clinic.  It was a relief just to be in the waiting room.  But that feeling soon faded into worry and more anxiety.  I showed up with my husband, Beckett and Pyper, his twin in tow.  We waited in an exam room with two chairs, a patient table, and a computer.  You try keeping fussy 2-year-old twins occupied for 30 minutes in a sterile examination room…I dare you.  FINALLY a knock at the door and a woman peeks in and introduces herself as the Physician's Assistant. I was glad we were tended to, but disappointed it wasn't the Main Man neurologist.

I should be grateful but the frustration of unanswered questions had gotten to me.  After the introductions she was taking detailed notes and making close observations of Beckett while he was itching to get out of there.  The anxiety level rose as she recommended genetic testing and an MRI under sedation.  Several genetic tests, I knew, were for rare disorders that could cause a child to have fatal consequences or that would require round-the-clock care for the rest of a child’s life.  These tests were suggested merely to rule them out.  Because some of his symptoms were associated with these disorders the question of affliction lingered, and we needed to know one way or another.  The genetic test I feared most was Rhett’s test.  This is a fatal genetic disorder that, however mild, can reduce a victim’s life to 10 years.  The other tests scheduled were for Fragile -X, along with about 129 genetic metabolic disorders and a chromosomal karyotype.  Aside from a dreaded positive result, my husband and I cringed at the thought of how much these tests were going to run and the very real prospect that the insurance company would deny claims. 

We waited almost 3 torturous months for the genetic results to come back.  During this time I spent untold hours researching genetic disorders.  I was looking for answers that never seemed to come.  I would cry at school and cry at home praying for the tests to be normal.  Meantime, we were still waiting to get a MRI.  Beckett was continuously sick with a cold or ear infection.  After 3 attempts to get him an appointment at Texas Children's for an MRI, we succeeded.  But I hated that day too.  He had to be put under anesthesia for a conclusive view of his brain.  I myself almost passed out when they gave him the drugs that put him under.  My husband was holding him while they administered the drugs.  He fell limp, which was painful to watch.  It was a successful scan and the results would be ready in 3 days.  Again, 3 very long days. 

That day finally came, the moment of truth!  We had the results of both the genetic testing and the MRI.  The PA called and said all the genetic tests were all NORMAL!  I felt my chest sigh in relief.   The neurologist looked over Beckett’s records and related some of the best news I’d had in a long time.  He said that there was a discrepancy in his MRI. He explained that the myelin, or white matter in his brain was at 50%.  A typical 24-month-old has approximately 90%.  Myelin is the plastic covering that insulates an electrical impulse wire. This disorder makes it difficult for him to make connections.  My heart then fell again. The emotional roller coaster is exhausting.  Hope then returned when the doctor said that with extensive therapy and lots of patience, there is an 85% chance that Beckett would be fully functional by the age of 6 or 7.   This mother dreams of that hopeful prognosis every day.  This is a potential result I won’t forget and I pray that this time – this time – the doctor is right. 

We will see, because there are changes every day, good and bad, but for now we choose to hold the most positive light before us.

My Biggest Question....Why?

Dealing with the emotional shock of finding out that our beautiful blond haired, blued eyed, smiley faced little boy had so many problems facing him was devastating to us.  The questions of course began to race through my head of why this was happening to our family.  I would look back at the things I could have done for this to happen. I wondered what I had done wrong.  Did I not eat right, pray hard enough, read my Bible enough, not be the best person I could be? It was like a broken record playing in my head over and over.  The frustration of the unknown lingered and never seemed to subside.  I ask God many times "why" and the answer never came.  I had to teach myself everyday to let go and do the best with what I had to give my boy, while at the same time providing support and attention to my other 4 children.  It seemed like a whirlwind had taken over my life. I was out of control of my own life and I didn't know what to do.

Reprieve came when we received help from the ECI program for Beckett when he turned 8 months old. They provided physical therapy, occupational therapy, and play therapy for him two times a week at daycare. This helped us financially by qualifying us to be on their sliding scale to pay for his monthly therapy.  It also kept my husband and I from taking off work and bring him to another location for therapy.   Before Beckett began therapy we wasn't crawling, turning over well, he could not feed himself finger foods or hold a sippy cup.  He also did not babble like normal.  He did however have a scream that would set off our broken glass alarm.  My husband playfully said he was an "X-Man" and had "X-Man Powers".  That piercing scream would make the hair on the back of your neck stand up.  On the flip side to that he has a contagious laugh.  When he laughed, everyone laughed with him.

His therapy began to help is motor skills and coordination develop by the time he was 12 months he began to scoot on his rear end and was attempting to try and crawl.  We learned through the therapist that every motion he made had to be taught to him.  Hand over hand was key to his success in developing his motor skills & coordination.  On his one year well check we received a recommendation from his pediatrician to have Beckett be seen by an ENT for the continuous ear infections he had since he was 3 weeks old. He also had a concern about his hearing, since he was not talking yet.  He had a numerous hearing tests done, which thankfully were all normal. He and his twin sister both had ear tube surgery the same morning. This seemed to reduce the number of times he was sick. 

Beckett first pair of SFO's before be began walking

A few weeks after ear tubes were put in we found out from his physical therapist his feet are pronated and turn in. He has no arches, he has "flat feet".  This causes problem causes him to lack balance. She recommended him to get SFO's.  These types of braces came right below the knee and were custom fitted by casting.  Keeping a busy boy still for that was a three man job, one to hold his arms, one to hold his legs and the other to cast them. He wears these braces all day except when he his sleeping.  We also found that this was just the beginning of the many appliances and prosthetics he would have to wear. Another finanical hit to us.  These braces run about $2500/pair that must be replaced every 6-8 months, depending on how fast the feet grow.  Needless to say, my husband and I were saying...How much more can we take?...Looking back from now...so much more than we expected.

Beckett's First Year

During Beckett's 6-month well-check the doctor said that he would need an therapy evaluation to check for a condition called ‘hypertonia.’  This neurological disorder causes the muscles in the body to lose tone, which results in weak muscles and spasms that cause them to get rigid and stiff.  Hypotonia, we believed, also caused him to have lazy eyes, or strabismus. This then sent us to an ophthalmologist at Texas Children's Hospital in Houston.  To lessen the effects of the affliction, Beckett wore a patch on each eye, every other day for one year.  He also was treated for acute acid reflux, and taking prescription medication daily. We found out later that all these were symptoms were the result of the hypotonia.  Further, we were referred to a neurocrainal surgeon to treat a condition called phagiocephaly, also known as "flat head syndrome."  Custom-fitted for a helmet he had to wear this for almost 11 months. 

Simultaneously, insurance claims were being challenged.   For treatments, tests, and specialists so far, we were receiving bills upwards of $4000.  To no one’s surprise, the insurance company denied the claims.   Back-and-forth we went for almost a year.   We were however fortunate to learn that the company that fitted him with a helmet waived $3000 of its expense after we paid them $1000 cash.  But still, bills were adding up. 

Beckett at 5 months old before his helment

On top of the neurological and the undiagnosed global delays, Beckett was sent to see a neurologist for possible signs of seizures.  At 14 months I noticed sudden jerks and rolling of his eyes.  A CT scan and EEG test returned results of o seizures or abnormal electrical impulses coming from the brain.  A ray of good news, finally!

Needless to say, these tests and screenings were just the beginning of the many specialists my boy would come to know during his first months by my side.  Meantime, our frustration was building as we tried to find answers for his conditions.   We wanted desperately for someone to tell us definitely what was strong.   In the continuous search for finding the best possible care, we focused on getting him help through Occupational Therapy at Texas Children's Hospital, and eventually through our Harris county ECI (Early Childhood Intervention) program. The emotional and physical strains were taking their toll on my husband and me.  We were trying hard not to think about the financial impact this was going to have on our family, but expenses were never far from the back of our minds.

In Beckett’s first year we became familiar with hypertonia, strabismus, phagiocephaly, CT scans, and the ever-lingering fear of not knowing how to save our beautiful boy from medical conditions best left unfamiliar. 

The Beginning of Beckett's Story

The Beginning

My husband and I decided to have a baby.  This was my second marriage and my husband had no children of his own.  Three children from the first marriage was an obstacle to overcome.  I had had a medically irreversible tubal ligation at age 28 after my third child. Upon weighing options we decided to take a chance with in vitro fertilization.  After initial testing and under ideal conditions we proceeded with the regimen of injections and the stressful hormonal ups and downs of IVF.  Then, one happy day, we were very delighted and excited to learn that of 3 implanted embryos, 2 of the rascals had made it.  We were doubling the fun and having TWINS!

During the pregnancy we had several frightening experiences of losing them.  I prayed that God would protect my babies and keep them healthy and bring them to full term.  On bed rest for 19 weeks, I held on with them until the C-Section at 36 weeks and 6 days.  My baby boy was 6 lbs. 13 oz. and my baby girl was 7 lbs. 2 oz.  Both were healthy and to prove it they exercised full lung capacity upon arrival.  We were deliriously happy about the new additions to the family.  Although, the first week was incredibly stressful, as I was rushed to the hospital 7 days later to discover that I was in liver failure.  Turns out I had an infected gall bladder with a large gall stone the size of a marble blocking the bile duct.  Admitted immediately, the ER doctor ordered tests to ensure that my pancreas was not also infected, otherwise I would be need emergency surgery to save my life from the toxicity of the infection  Thankfully the tests came back normal – relief  –  but “I would not be going anywhere!” I began to cry, not so much for me but for my husband who was left stranded at home with the newborns.  I wasn’t as nearly concerned for my own life as I should have been even though the doctor said I was very lucky to be alive.  Still, my focus was concern for my babies and my husband who needed help and my two extra hands. The worries would have to wait however because over the next 10 days, I underwent 3 major surgeries.  Had my gall bladder ruptured I would have had only 25% of recovery because of the toxic infection.  After four more days on the mend, I finally got to go home to my babies.  Looking back on those harrowing days, I now know that God kept me near for a larger purpose.  I just had no idea at the time what it was. 

The first year was an eye opener to say the least because I was unprepared for the challenging path that lay ahead.   Raising young children, a mother hopes and prays for a natural growth and progression of the infants.  Baby milestones mark progress.  The first few months of the baby’s lives I didn't think much about these natural milestones. Possibly, because of sleep deprivation and maintaining a full-time work schedule.  But a few months in, I noticed that my baby girl, Pyper, was right on target with milestones as she sat up, crawled eagerly, and took a keen interest in toys.  Whereas, my baby boy Beckett could not hold his head up or sit up on his own without being propped up by a pillow.  Mental notes I started taking of the odd behavior he began to exhibit; like screaming during baths and an inability to focus on toys or to hold them. His muscles became rigid, yet weak and limp. He would lie stiffly on a changing table during a diaper change.  Very soon, these disturbing patterns began to tug at a mother’s instincts.  Something was very wrong with him.  My suspicions were confirmed during a 6-month check-up when the pediatrician expressed concern. Thus began a journey any mother or father dreads embarking upon.