I am writing this blog as a way to discuss the everyday struggles and everyday miracles that come from raising a special needs child. Let me tell you about our history and about our little miracle we affectionately call "Beau Beau".
When my husband and I got pregnant in 2007 we never imagined anything other than having a healthy, typical child. After an uncomplicated pregnancy, on February 7, 2008 Beau Weichers was born at 41 weeks and weighed in at 8 lbs 12oz. It was a fast labor and delivery. Unfortunately upon being delivered Beau had several problems and wasn't breathing. A combination of meconium aspiration as well as a high fever and only God knows what else, led to Beau needing CPR with chest compressions. For those that have experienced such an event, you understand the horror of NOT hearing your child cry. I remember laying there saying over and over again, "Why isn't he crying?". No one answered me. That minute felt like ten and eventually a little cry crept out but his breathing was horrible. The speed at which nurses and doctors were running in and out was amazing to me. There were so many alarms going off and our poor family sat in the waiting room hearing the alarms and watching the nurses run from the NICU to our room. I can only imagine what they were feeling as well. I got to touch him briefly but he wasn't in good shape so he was quickly taken to the NICU.
It turns out, I had a fever as well as Beau so I was kept in the hospital longer than your average vaginal delivery and Beau remained in the NICU for 7 days. They never did determine what the infection was. Initially they though he might have meningitis, but after a spinal tap (horrible - my husband was the brave parent and went with Beau for that) it was determined it wasn't meningitis. The breathing cleared up and the infection cleared and we were able to bring our child home on Valentines Day 2008.
Throughout the first year, I began to notice that Beau wasn't hitting milestones like he should. Every trip to the doctor was the same - first off he's a boy and boy's are slower and secondly he's a large boy so certain things such as rolling over, crawling, etc. won't be easy for him. I tended to believe that because Beau was a huge baby - we never did figure out such a big kid could come from some relatively small parents. Andy and I are 5'9" and 5'8" respectively and weigh less than we should for our height and age. Once we got close to a year though and Beau wasn't crawling I convinced the doctor for a referral to EDI, Early Developmental Intervention for physical therapy. They worked with Beau for about 2 months teaching us ways to help him crawl. It wasn't until March of 2009 that he finally began to crawl - it was slow and it was awkward, but by God he did it. The whole first year he never held his own bottle. The transition to a sippie cup wasn't too terrible, but teaching him how to hold it was a challenge. I still wasn't hearing "mama" or even "dada" and I kept worrying and thinking that something just wasn't quite right.
By spring of 2009 I was getting really concerned. He wasn't walking, he wasn't talking (although he was doing plenty of babbling) and once again, something just wasn't quite right. As much as I didn't want to, I was comparing him to the other children his age at daycare and that made my mind question things even more. By July of 2009 I had finally convinced the doctor and the insurance company (that's a whole other issue and pet peeve of mine) that Beau needed more physical therapy and speech therapy. The insurance company denied both but we managed to have one visit with the speech therapist who knew without a doubt that Beau needed services. We saw her on Monday of that week and on Wednesday night our lives changed forever.
Wednesday July 29th, 2009, the night after our wedding anniversary, I was enjoying a fun evening at home with Beau while Andy was at work. (above is a picure from that evening) We ate supper, went for a walk, came home and played trucks and he had a blast in the bathtub. I took several pictures that night, as I always did of all the fun we were having. Nothing seemed out of whack and he seemed to be feeling great - no fever, no illness. Andy got home from work around 9:30 that evening. I was sitting on the couch with Beau who had already fallen asleep in my arms. Andy and I talked while Beau was sleeping and around 9:50 I took Beau down to our bedroom where we had his bed in our room. I laid him down like always, but for some reason didn't turn on the monitor. I had gotten a call from our realtor that they wanted to show our house the next day, so instead of going to bed, I wanted to vacuum and clean up a little. I was in the kitchen cleaning up and talking with Andy right after I laid Beau down. Our kitchen was about 15 feet away from the bedroom, so I felt safe in the fact that I would hear Beau if he cried.
Andy went down to our room around 10 PM to plug in his cell phone, but didn't see or hear anything strange with regard to Beau. Around 10:10 as we were in the kitchen, I told Andy that I just thought I should check on Beau. The scene that I walked in on next, will forever be embedded in my mind. As I entered the room the sound was the first thing I sensed. He was gurgling and I flipped on the lights. He lay there, on his back eyes wide open staring up at the ceiling and covered in vomit. I grabbed him up and brought him out into the hallway between the bedroom and kitchen. I screamed at Andy to call 9-1-1. I had to pry Beau's mouth open and attempted to sweep out the remaining vomit that was caught in his mouth. I got bit in the process and wasn't even thinking seizure at the time. He was completely limp and wasn't responding to anything I did. The ambulance arrived so fast - luckily we lived really near to a fire station. They came in and looked at him briefly then scooped him up and ran out of the house with him before even any other EMT responders were able to get in the door. I ran out and jumped in the ambulance and watched out the back ambulance door. I remember looking at Andy, his cell phone still up to his ear, with the 9-1-1 operator still on the other end. The neighbor was standing next to Andy in the street. The doors shut and the drive to the hospital began.
Once we got going I could see the concern in the lead EMT's eyes. He was a large man, probably 6'4" but he was so gentle with Beau. Beau wasn't moving anything on his left side and I'll never forget the EMT telling the driver to stop for a minute as he attempted to get an IV in his left arm. He didn't get a reaction from Beau and he and I looked at each other knowing it wasn't a good sign. He hollered at the driver to start driving again and to go as fast as he could. All I could think was stroke. I began to dry heave and couldn't breathe right. I thought I was witnessing the end of my one and only child. At the hospital Beau remained "out" and they did a chest x-ray because they were concerned about aspiration and then they did a head CT. The doctors were fairly certain it had been a major seizure, but they wanted him to be seen by a pediatric neurologist. We don't have one of those at Covenant, so they got him set up to be transported by ambulance to one of the best hospitals in the nation, University of Iowa Children's Hospital in Iowa City. They wouldn't allow us to accompany Beau in the ambulance so Andy and I raced to the U of I, starting 10 minutes after the ambulance and practically beating them to the hospital. As the ambulance was getting ready to leave to transport him, he began to wake up and seemed more alert. It was a welcome sign for everyone.
Upon arriving at the U of I they checked him in through the ER. I'll never forget what the male nurse said to us when we stepped into the room. His first comment was "You guys aren't that big". We chuckled because Beau was a big boy and we aren't so he expected to see bigger people. The next couple days passed by with lots of tests and needle pokes. His EEG was markedly abnormal with lots of electrical abnormalities. The MRI though, was what gave us an explanation for all of the struggles Beau had been having. When the neurologist came in to give us the diagnosis it sounded like a garble of words. Your son has partial agenesis of the corpus callosum. The corpus callosum is a broad transverse nerve tract connecting the two halves of the brain. Beau's started to grow in utero, but for whatever reason, it stopped growing. What? What does that mean? Why Beau? Why our son?
Fast forward to today. Beau is 3 1/2 years old and is slowly making progress all the time. He still has seizures and they are mostly kept under control with the use of two daily drugs; Keppra and Tegretol. We use an emergency drug for seizures called Versed which is given intranasally during a seizure that lasts longer than 3 minutes. He walks, but his balance is very poor and he ends up falling quite a bit. He doesn't talk much - again he still makes a lot of great sounds, but not too many words are coming out. He is able to say "dada" and here lately "mama" is becoming more frequent. His very first word was "Bampa" for grandpa. In the last few weeks "hot" is used a lot as well as "juice" which comes out as "uce" but it works. He has approximately 30 sign language signs in his vocabulary which has helped him to not get so frustrated with trying to communicate. Imagine if you didn't have a complete connection between both halves of your brain. Coordinating something even as "simple" as walking is extremely challenging. He attends special needs pre-school during the school year. He goes to Early Developmental Intervention at the local hospital for speech (2x/wk), physical (2x/wk) and occupational therapy (1x/wk). He see 3 different specialists at the University of Iowa; a neurologist, an endocrinologist and an ophthalmologist. He has always attended a regular daycare, but this summer we were fortunate enough to find an elementary education major at the University of Northern Iowa, which is right near where we live, to come into our home for the next 6 weeks before school starts to work with Beau. Her minor is in severe and profound disabilities. She has volunteered several years for the Special Olympics and we feel blessed to have Erin working with Beau in our home while we are at work. We are hoping that with that kind of one-on-one we can focus on weaning from a sippie cup and learning how to use a big boy cup. We are also attempting to try potty training. He really has no interest but we continue to place him on his seat on the toilet. I find myself wondering what it must be like to teach these things to a "typical" child. Having never raised a "typical" child I wonder how hard it must be and how much harder we have it. Just one of the many things that goes through the mind of a parent with a special needs child.
Beau has brought such inspiration to our family. I have been involved with the National Organization for Disorders of the Corpus Callosum (NODCC) and volunteer as a person that newly diagnosed families can contact. I also head up the IA, MN, WI Family Partnership Program. I am trying to introduce all famlies in these states to each other so that we have our own local support system. I was also inspired to form our own non-profit organization, Beau's Beautiful Blessings, to benefit children in our community and surrounding communities that live each day with a brain abnormality, epilepsy, brain injury or intellectual disability. We pay for medically necessary items that insurance may not cover, special needs camp scholarships, therapy dogs, etc. Every year we hold a huge bowling event raising money for our foundation as well as the NODCC and the Iowa Epilepsy Foundation.
Every day is a challenge, but we wouldn't change Beau for a minute. He's an amazing young boy that has taught me more than he'll ever know. God gave Beau to our family because he knew we could handle all of the challenges and all of the joys of a special needs child. I hope that others will read this blog and gain something from it - even if only a kinship among parents that are going through the same emotions, challenges and joys.
"Every child is gifted. They just unwrap their packages at different times." -- unknown
UPDATE: April 25th, 2013
Beau turned 5 years old on February 7th of this year. He has made some great improvements since I first wrote this entry. He sign language usage has increased and he knows and uses about 50 signs. He also has a communication device - the Nova Chat 7 - which has been great in helping him communicate his wants and needs. His verbal words consist of mama, dada, hi, truck, bampa, hot and baby. He is finishing up his second year of special needs pre-school with his amazing teacher, Ms. Tyna. He is going to miss her so much. Our whole family will miss her so much. She has made huge gains with Beau and I attribute her patience and love of her job for developing Beau over the last 2 years. He will still attend summer school and then in the fall he will start at his new school, with a new teacher and new friends. We are slightly terrified about the transition but somewhat at ease because of the good things we have heard about his new teacher. Physically, Beau has made great strides. He attempts to run and does great with keeping his balance on uneven surfaces. His physical therapist, Kelli, has been working so hard with him to get him to learn how to ride a trike. I'm happy to say that she has succeeded and Beau is now able to ride a specialty trike! His feet are strapped on and he has a back support and seat belt around his chest. It keeps him positioned safely and keeps his feet where they need to be. He has figured out how to initiate the pedaling and even has gotten good at steering! It's quite an amazing sight to see! The first time I witnessed that at therapy and we left to go home, I cried the whole way home in the van.
Beau amazes us every day and we appreciate all the special people he has in his life - not just real family - but educators and therapists. Erin, who has been our summer babysitter for Beau for a couple years now is still around and still loving Beau and the feeling is mutual. She now helps us out with little sister Delaney as well. Then there's Ms. Tyna - who I'm pretty certain Beau has a major crush on - who has devoted so much time and energy to Beau and taught him so much. He has several therapists at the school as well as aides that treat Beau like he is their own child - Jamie and Erin and many more! Lindsay, Kelli, Thea and Abby at EDI work every week with Beau and continue to push him and push him to be even better than the week before. We have a bigger "family" then we ever anticipated, but we love these people for what they have done for our son, especially during these critical early years. We are blessed to have them in our lives. I can guarantee they will forever be a part of our family.
Here's to year 5 of this bumpy ride. I am so pleased by his progress since our initial diagnosis and I can't wait to see what this year brings us.
