Slow Moving Stream

We noticed that when Beckett would begin to make gains and advance a little, other characteristics would pop out in his personality. His tantrums became unbearable at times. Every time the front door opened and the chime went off, he raced to the door as fast as he could to go out. When he was about 30 months, we noticed that he became fascinated with water. This was a soothing activity for him.  His focus was scattered and when we could get his attention, it was only about 2 -3 minutes at a time.  I knew this was going to interfere with his learning. 

Our Little Water Boy

We were about 6 months away from enrolling him in our PPCD (Preschool Programs for Children with Disablilities) program at our local elementary school.  I was anxious to get him in so that he could have more regular and consistant intervention.  It was also feeling relief because the PPCD teacher was the wife of a coach my husband worked with.  But not only that, I had gotten feedback from other parents and employees that knew her and they said she was one of the best teachers in that position.  I knew she was going to take care of our boy.  In the meantime, we were waiting and preparing for his transition and were getting a better idea of how his progress should be moving. 

His therapist from ECI would tell us that development came in a particular order.  He would have to master his motor skills, both gross and fine before spoken language could be mastered.  He had a long way to go.  We were still trying to get him to eat with a utensil, hold an open cup to drink from and suck threw a straw.  He was able to walk upstairs, but not down yet and unable to jump.  It was heart breaking to watch him trying to jump. We knew he wanted to and just couldn't get his feet of the ground.  It was going to be a slow road a go. 

The funny thing is about his personality was all said in his name.  I had a hard time trying to find out what his name actually meant when he was a baby.  I ordered a Birthday Keepsake that had the information about his birthday day and it included the meaning of his name.  My husband and I weren't suprized to read that his first name means "Slow Moving Stream".  He was definaltly like a slow moving stream.  The one thing I think about a slow moving stream is that they start out slow  and as they move along their path then the end becomes a roaring wide river.  I know that Beckett will one day overcome his obsticles and become a strong determined individual that has many gifts to offer this world.  That is my prayer for him and I know that God will be faithful to answer it.

Family Impact

I guess no one ever really thinks that they will be blessed with a child with special needs. I do know that my son is a blessing to our family.  I feel like I am being refined for something, I just don't know for what yet.  I know that in time it will be unveiled and it will change my life for the better.  I do however, sometimes wonder why the "refining" has to be so hard. 

My family has had to learn and adapt to new routines and changing the way they do things for and around Beckett.  Him being a twin was hard because when we would do something for him, we also found ourselves doing the same for his twin, Pyper. I know she knows that he needs the extra help, but I still try an give her that little extra when I can. I feel guilty at times when I have to spend more one-on-one with Beckett and had to make Pyper wait.  Her need for attention is also very high. I guess every toddler craves every bit of attention from their parents.

Big Brother Sawyer Entertaining the Twins

We also ask a lot of our older children.  They help us out tremendously around the house.  Ok..in reality, they do sometimes have to be coerced to help.  On days we would come in from work we would have one of our teenage boys play with Pyper, while my husband or I would bring Beckett aside to work on sounds, making signs, or putting together puzzles.  At the same time, one of us would be cooking dinner for seven people. My other teenage boy would help me with chores and my oldest daughter helped when she could.  She was is at home going to college, working almost a full time job.  She would do house cleaning on days she was out of school or wasn't working early. 

Autopilot is common place in my life.  My five children keep me very busy. Four are usually in extracurricular activities. They have me running around to football games, practice, and therapy. It is all exhausting, but rewarding to see their successes.  I know that God has given me the strength to endure. Without my wonderful family I don't know how I would do it.  A friend of mine told me once that, "Children pick their mommies".. I know and believe that is to be true.  It sometimes is still day by day, but I know that there are going to be many blessings later and my hope still never fades for my special boy.

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.

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.