Saving Isaiah

My oldest son, Alexander Ybarra, wrote this essay for school. He chose to write about his little brother Isaiah.

Author: Alex Ybarra                                        Date: May 26, 2014

Title:   Isaiah

I always wanted a little brother. I was excited when my parents became foster parents. One day, Miss Martha our caseworker, called us. She told us that they had a little baby that needed a home. It was hard for my mother to take care of babies because she was sick and could not carry them. I promised I would carry him. I wanted him so Miss Martha brought him to us. I made a welcome sign and hung it up for him. I hugged him. He was very small and couldn’t stop drooling. I patted his head and he wanted to go with me. He was cute. Miss Martha said everyone called him “Chachi”.

The doctor said that my little brother was slow. He said that Isaiah would not learn to walk until he was much older. He also told us that he would not learn to talk on time and have problems with social things. He said my brother might have lots of other problems later. “Early brain damage is usually generalized rather than specific, with increased specificity of abnormalities revealed as development progresses.” (CDC)  When my mom said that my little brother’s biological mom had done stupid things while pregnant with my little brother, I was very angry.  I was angrier when I later found out that 10 percent of women used alcohol when they were pregnant. (Wattendorf and Muenke 2005).

My little brother looked scared for the first week with us.  My mom carried him in one of those baby backpack things, but Isaiah would reach for me. I got him to laugh and soon he looked like he felt at home. I made it my personal mission to teach him to walk and talk and grow up like a normal kid. I think I decided that Isaiah was my own child. I even told my friends that Isaiah was mine. They believed me.

I started with walking because he had already learned to crawl. When I was watching him crawl, I noticed he did something that resembled the moon walk. I showed my mom. When she saw it, she got excited and laughed. Isaiah got excited and started to clap. He clapped all the time. So, three months later, I noticed he would crawl to the wall and use it to stand up. I used this to teach him to walk. I called him to come to me. He would go to the nearest wall and he would stand up and try to run to me. He took 3 steps and fell. He would try to crawl to me, but I would tell him no. He did this again and again. One day he tried to crawl to me and I loudly said no to him. He really wanted to be with me so he finally walked.

Now that I had gotten walking out of the way it was time to work on talking. Every once and a while, I would ask him to say some words like candy, dog, and other small words but they would always come out as gurgled sounds. This meant he wanted to talk and was trying but couldn’t, so I began sounding words out with him. My little brother’s first word was Alex ironically. Well, he couldn’t say my name so he just said the word Ali. Then my mother read us a book about someone named “Alibaba”.  Isaiah called me “Alibaba” after that.  My mother and Isaiah still call me “Alibaba” sometimes. 

As Isaiah has grown older, we have learned that kids with FAS sometimes have heart problems and seizures. (Nguyen 2008). Isaiah has both of these problems. I also found out that his asthma could also be because of the FAS. (FAS 2014). He also can get angry easily. It is hard when he accuses my mom and me of things we haven’t done. I sometimes forget that he just doesn’t get it. When I mess up, I mostly know I have done something wrong. Kids with FAS do not understand right from wrong most of the time.

The list below shows some of the problems my brother has already had. 

Attention deficit disorders - ADD/ADHD

Mild to severe vision problems

Higher than normal to dangerously high pain tolerance

Dental abnormalities

Behavioral problems

Extreme impulsiveness

Asthma

Poor judgment

Complex seizure disorder

Developmental speech and language disorder

Developmental delay

Sleep disorder

Autistic traits

Night terrors

Heart defects

Central auditory processing disorder

Reactive outbursts
Learning disabilities

It is kind of ridiculous that doctors have told us he has all these problems, but he is on the honor roll. I will keep my promise to Isaiah and keep helping him to do better than the doctor said he could.

A Green Ribbon

This was a particularly overwhelming week at my job as an elementary school secretary. I am not sure if it was because I had more time sensitive things to do than usual at school.  Maybe it is because things in my personal life always have to be so interesting. Thus, when my youngest came to the school office to have me sign his report card, I was only slightly paying attention. Isaiah exclaimed, “I think I am receiving a ribbon today!” I hugged him as he went back to class leaving me still staring at the report card he had left in my hand. His words just starting to sink in. Ribbon? Honor roll?

Fourth grade has been ridiculously difficult for us. I must confess there have been many times I have thought back to Dr. Karnik’s words that my son would most likely be in special education his entire school life. I have wondered if fourth grade wouldn’t be the beginning of that prediction.  His life has been a constant struggle of trying to beat the seizures and rages and consequences of his medical diagnoses. I still possess my son’s medical record that reads, “These are disabling and handicapping diagnoses for which he will require assistance for the remainder of his lifetime.” That letter sits in his permanent record at school today.

Honor roll? I quickly asked my co-workers if they had seen Isaiah’s name on the honor roll roster. No one knew for sure.  At this point, I really wasn’t thinking clearly anymore. I was no longer the elementary school secretary who is normally fairly capable. I was back to being the bewildered mama who rarely feels like she knows how to parent these kids and is constantly second-guessing herself. Our sweet registrar  immediately knows when I am no longer myself. She has gone through Isaiah’s seizures with me. She has even cried genuine tears with me and prayed for us. Who would have thought that this woman and I could have become so close?  “Dria, all As and one B is A/B honor roll.” I walk away from her looking at the report card in my hand. Isaiah made A/B honor roll. I can’t stop crying and it takes me a while to get it together. I know she already understands, but I feel the need to say what we both already know. “This is the little boy doctors said would be in special education. He has NEVER been in special education and TODAY is getting A/B honor roll.” I make my way to the cafeteria to watch him receive this honor. I stand there doing all I can not to lose control, but I can’t hold back the tears. 

This simple little green ribbon means so much more than good grades. It’s a token of God’s hand at work in the life of a sweet little boy named Isaiah. It’s a token of God’s kindness towards me for restoring my son when doctor’s said it would be impossible. It is grace that out of all I have done wrong, Isaiah has turned out so right.  It is a testimony to the faith of  my youngest son who has always trusted in what he couldn't see. It is a trophy to the people that have invested in Isaiah.

Thank you: Alex Ybarra for teaching his brother to walk.  Brad Riemer, Isaiah's first grade teacher, for laying the foundation and being Isaiah's mentor and my friend to this very day. Becky Hernandez, the expert teacher, who helped Isaiah's other teachers figure out the best way to teach him and helped me not lose my mind the first two years of figuring out my babies medical challenges at school. Anna Rutowicz, Isaiah's second grade teacher. Many teachers would have just wanted to go home and forget a challenging student, but Ms. Rutowicz came and got Isaiah in the evening and asked him to help her walk her dogs on their most difficult days. She would say, "If I had a hard day, I know Isaiah had one, too." Tammi Walker, his third grade teacher, whom Isaiah said made being in class fun. Alina Tarango who came in during the summer to make sure Isaiah didn't forget what he had learned in the third grade. She worked with him and even stays after school when needed to make sure he stays on target. Cyndi Britton, Isaiah's sweet tutor, who stays after school when needed to help Isaiah with his homework even on days when his diagnoses makes him unpleasant to work with. She is always up for the challenge and doesn't like him less on those days. Brian Alaniz who has jumped in to rescue me in the office when Isaiah couldn't do homework with mama, but was able to do it with Mr. Alaniz. Ms. Schlechte, Ms. Schilhab, Mr. Hughes, Ms. Birt, Ms. Bazan, Ms. Evans, Ms. Quinney, Rachel Sanders, and all the other staff members at Riojas Elementary School who have impacted Isaiah's life. Michelle Morgan, the miracle working attorney, who forced the state to give my son insurance and didn't charge us a single penny for all the hours she put in on our behalf. God has used each of you to change the course of what his life could have been. Thank you.

 

Zombies

Right before this baby stole my popcorn, he told me he would not kill me if I was infected by a zombie. So glad to hear this information!

Nicest Thing

Isaiah Rashad Henderson said the nicest thing to me after I tucked him in tonight. He said, "Mama, I am glad God created you."

Ain't No Lazy

Isaiah, ironing his own clothing, because he likes to look nice This baby makes me prouder than he knows. Lazy isn't in his vocabulary.

 

Alex needs a haircut.

The role of the lion from the Wizard of Oz will be played by Alex Ybarra.

Thankful for Isaiah

First, Isaiah was playing with my hair. Then he fell asleep next to me. Sitting in the back isn't such a bad gig after all.

Sock Kisses

When Isaiah was teeny, I would kiss his little feet before I quickly put on his socks. It would thrill him to know he had mommy kisses with him all day.

Today, he asked for kisses before he put on his shoes. Really needed that today.

Isaiah was supposed to stay in the hospital through the end of today at least. The neurological team was then going to evaluate his status before deciding if he could go home. Isaiah realized a couple of days ago that he would not be going home in time to attend church on Sunday morning. He was beyond upset. He started to argue with one of the medical providers. At first, I was embarrassed and wanted to scold him for being disrespectful. However, I realized that my little boy had gone through so much. As he sat up in that bed, with all of those wires sticking out from his little head and chest, I knew he had the right to protest his current situation. "God has healed me!" He shouted at the doctors. "If you won't let me go home, God will heal me so I can go to church!" The doctors planned to do some sort of strobe light procedure today to induce a seizure. However, they received his MRI results back yesterday and amazingly found nothing. All the other tests came back without any significant findings. Just a few days ago, my son was walking down the hallway of Riojas Elementary school in a daze dragging half of his unresponsive body down the hall and unable to hear the teacher who was asking him to stop. He was on the verge of a stroke according to Dr. Clarke. Today, we attended church. The doctors gave Isaiah some anticonvulsant medication which he will have to take for two years. They will continue to evaluate him for seizure and stroke activity. For today, we are glad to be home.

Miracles Happen

You guys aren't going to believe what I just received! The CPS worker that has avoided me for MONTHS just emailed me a Medicaid card for Isaiah. Thanks to Michele Morgan who helped me out of kindness alone. Her threat to sue the attorney general's office made someone listen today. Praise God from whom all blessings come. This is a miracle!!!!

Our Dirt

Genesis 12:7, “I will give this land to your seed." Here is our seed checking out his new dirt!

Super Bowl

Who won the super bowl today? Isaiah and his team!

Sins of the Fathers

The Book of Job tells the story of a man named Job. Job was a good man. Job trusted God. But Job had terrible troubles. The devil caused Job’s troubles (Job 1:12; Job 2:6-7). But Job did not know this fact. So Job thought that God caused the problems (Job 19:1-12). In fact, God did not cause Job’s troubles. God merely permitted Job to suffer. Still, Job trusted God. And Job refused to insult God (Job 2:9-10). Job’s friends tried to help Job. But their advice was wrong. They did not think that God would allow an innocent person to suffer. So they thought that Job was guilty. They guessed that Job had done many wicked things (Job 22:4-11). There is much more to the story of Job, but for the sake of my blog post this is all I will share. I encourage you to go and read Job's story in the bible. There is much to learn from Job.

I lived in a highly critical home as a little girl. I quickly learned the art of people pleasing as a way to gain acceptance. I excelled in school and in work and in friendships because I ran myself ragged pleasing everyone.

The Father delivered me from the sin of people-pleasing recently, but I sometimes fall back into those old habits. Its kind of like someone offering to cover the dinner check, but you keep snatching the bill from their hand. I keep snatching my bad habits back from the throne of grace. It isn't wrong to want to please others. This is a godly characteristic. However, it becomes sin when your desire to please others exceeds your desire to please God.

I found myself in this place recently. A man prayed for my son to be delivered from his seizures. He ended the conversation with a warning that perhaps I have sin that is "causing" my son to have the seizures. I felt the need to please these people. The examination of all things wrong with me began again. Yes, there is sin in my life I am sad to confess. I am imperfect in so many ways. I often find my size ten shoes in my mouth and wish I could take my words back. I often fail to do things I know I should do. There is sin in my life. There are many areas in which I fall short. I am sure my children suffer because of my short comings as any children suffer because of the dysfunctions of their parents. But, it wasn't until today after going to my own beloved church and hearing my precious pastor and his wife speak that I realized my short comings and sin are not the cause of my son's seizures. Going to church was like a waterfall of grace and healing and covering over the judgments of others. Healing and embracing and freeing me.

I could hear God speak to me through Pastor and then through the spirit in me. My son's seizures are not caused because of my sin. My son has seizures because his biological mother was a drug addict that permanently damaged my child's brain. This is the only reason my son has seizures. Isaiah came to us at nine months of age still raging from being addicted to cocaine and alcohol. He couldn't hold his head up and his neurologist said it would be a long, long time before he would walk or talk. BUT, God said otherwise. He learned to walk and talk in a timely manner. Then the doctor said my son would probably be in special education classes, but Isaiah has never been in special education classes. And just like God healed Isaiah of his stuttering and drooling, God will heal Isaiah of seizures. That is why God told us to name my son Isaiah. Beauty for ashes. Isaiah is beauty for ashes. My life is beauty for ashes. And my God is the God of beauty for ashes. I pray that I wouldn't be so easily swayed by the opinions of other people. May I find my need for acceptance in the arms of my Father. May God help me filter the words of others through His Holy Spirit. Shalom.

Austin Science Center Field Trip

Grandpa

Grandpa and Israel came to see Isaiah play football. Here is Isaiah walking hand in hand with grandpa after the game. Love this pic!

Scan

Isaiah had his brain scan today. He is such a trooper. The nurse didn't have to give him the sleepy medicine because he laid so still on his own! I know Isaiah is tired of all of these tests. We just want the seizures to end. Keep praying!

Translating Through Disabilities

There are often disparities when trying to communicate with people who have a disability. My nine-year-old son has fetal alcohol syndrome, sensory processing disorder, and a history of seizures with stroke-like symptoms. In a nutshell, his brain was damaged because of alcohol and cocaine use by his biological mother.

"The greatest problem often is a marked discrepancy between seemingly high verbal skills and inability to communicate effectively." ( Streissguth and Burgess). This evening my little boy went to his room where he proceeded to throw his lamp, everything off his bed, and several toys onto the floor. It was a good night because he was able to stop fairly quickly with minimal insults directed at people in the household. My son knows words that most nine-year-olds do not know; however, he is completely unable to verbalize these moments of utter frustration most of the time. This evening the lamp on the floor was because he didn't get to read his paper in front of the class. We normally do not know what triggers his anger.

In my work as a foster parent, I have interacted with many children with emotional disabilities. It is very difficult to communicate with them. One has to become very clever to be able to interpret what is not said verbally. Sadly, I have encountered similar situations trying to manage adults. Adults are often emotionally disabled and their ability to communicate hindered as well. It takes God's grace, patience, and understanding to be able to work through these communication barriers.

Fastest Runner

Isaiah is the fastest boy in the first grade!

Grandma Pjs

Isaiah showing off his new pajamas from grandma.

Dria and Isaiah