Emma Joyce

Thank you to Rhonda for sharing her beautiful daughter, Emma Joyce's, story with us!

Emma was born April 20, 2007. Not long after, I had sensed “something” was not right. Emma seemed jumpy, delayed and not able to follow vision wise. At her 2 month immunization appointment, I asked her doctor to take another look at her. She was then referred to the pediatrician. A few weeks later at her appointment, he immediately sent us to Winnipeg Children’s Hospital. She ended up getting admitted for testing, which was to take a couple days. It turned into a very long three weeks. I kept telling the doctors it was like she was having a seizure. Finally they called the neurologist and he didn’t think so, but sent her for an EEG to be sure. Little did I know the next 45 minutes of that day would change our lives forever. They told us we were to wait in the hallway for about 45 minutes. After 15 minutes they called us in to tell us Emma has had 4 seizures since she had been in there. Although I was devastated, I tried to look on the bright side, thinking lots of people have seizures, it can be managed. I did not realize how dead wrong I was. Emma was given a load of Phenobarb to settle the seizures while they could do further testing. She was so sedated, she was out for 3 days, and I was starting to go crazy. She underwent numerous testing, such as EEG (had it on for a few days), MRI, LP, numerous blood tests, PEG Radioactive testing, and that is to name a few. She was having 20 + seizures a day, which were Infantile Spasms, so it just looked like she was jumping or startling while falling asleep, while sleeping or awakening.

She was finally released from the hospital and sent home on ACTH injections, which is a steroid. It worked wonderfully to control seizures, however, you cannot be on it forever. When she stopped the injections, we had numerous trips to ER here in Brandon as she was having seizure clusters ( seizing, brief stop, then seizing again, etc). We have had so many adjustments to her meds.

In June, 2008, her neurologist finally told me what she was diagnosed with, although I am pretty sure he knew before. She has Early Epileptic Encephalopathy of Infancy, otherwise known as Ohtahara Syndrome. It consists of, but by all means not limited to, cortical vision impairment, severe developmental delay (she is like a newborn baby), seizures (very difficult to control with medication) and feeding issues.

In January, 2009, Emma was admitted to WCH to start on the Ketogenic Diet, which it a medical diet often used to control seizures. At that time, she also underwent a feeding study, at my request. Since then she has been restricted to have anything by mouth, as she was putting 80% into her lungs, causing her to have aspirational pneumonia. She was scheduled for G Tube surgery. The night before surgery, she had a fever, which turned out to be the start of another pneumonia. Surgery was canceled and the next date was February 13th. She remained in the hospital all this time. After her surgery we returned home on the 18th of February. It took a lot of getting used to, as I was having to use the feeding pump, IV pole, etc. She adjusted wonderfully, life was great!

March 10th came along and Emma started having severe diarrhea. Her doctor and I figured, probably just a flu bug. Over spring break, we went into Winnipeg as she had appointments with Metabolics, neurology, surgery follow-up, and her pediatrician. They were all clueless as to WHY she would still be having diarrhea. We collected stool samples and sent them away, with no results to show anything. We took her off the Ketogenic Diet; put her on Nutren JR. with pedialyte to see if that worked. It didn’t. At the end of April, she was still the same. We went to the Rehab center for Children clinic to see her feeding specialist. We switched her over to a formula that is the most broken down formula you can get. After 5 days of being on the new formula, Emma was nothing but bones, she dropped weight like crazy. Her eyes were sunken in and she looked absolutely horrible. After having her on straight pedialyte, and no result for the better, I took her back up to the hospital here. The doctor could not figure out why either, especially after getting pedialyte on continual feed. Emma was so dehydrated and malnourished, that her sodium was so high; she was at major risk for a stroke. They admitted her to BGH. After being in hospital 4 days, with still no answers, Emma developed pneumonia again. Her doctor refused to prescribe her an antibiotic, and she was so weak, she kept desating and they finally transferred her to Winnipeg via ambulance. She was admitted to CK3 there, and shortly after, rushed into PICU.

In PICU, seeing Emma for the first time, hooked up to BIPAP, I thought, my God, this is it, this is how I am going to lose her. It is a mother’s worst nightmare. I was standing beside Emma and realized they had her G-Tube hooked up to a drain, to empty out her tummy. I asked the nurse in there, what is that coming out? Yes, it was poop. The next day, she underwent a fluoroscopy, to test where the fluid is going when put into the tube. That is when we finally found out why she had diarrhea in the first place. Her G-tube was in her colon, NOT her tummy! Needless to say, she was very dependent on the BIPAP machine and still very weak. She spent 2 months in PICU and up on the ward. Finally, we were sent home at the end of June, once Emma had recovered wonderfully as she could have. She was sent home on oxygen, and she had an NG and NJ tube for feeding and we were awaiting her surgery. First two surgeries were canceled due to the H1N1 breakout at the hospital in Wpg. All of the PICU beds were full and they would not do Emma’s surgery without a bed In PICU for her after.

Finally, at the end of August she went for surgery. Emma had to get a fundoplication, which is the stomach wrapped around the esophagus to prevent refluxing, repair of the two fistulas (hole in colon and stomach from first tube) and a new G tube. I made the decision for her to have an Epidural instead of Morphine for obvious breathing issues. After her surgery, she was placed back on Bipap, just so they didn’t lose headway with her. The next day, she was wonderful! She came off the BIPAP and was back on her O2 mask. After a few days in PICU, we were sent up to the ward. After a few days and after they were sure everything was fine and her feeds were being tolerated at continual, we came home!! When we came home, it was my job to work Emma up in volume and down to a bolus feed (one feed at a time). She is currently on 4 feeds a day, with each one lasting 2 ½ hours.

She still requires home oxygen, as well as portable when we leave the house. She is always on an oximeter, which shows her heart rate, O2 level, and will alarm when desating. We were so fortunate to get her wheelchair. It allows Emma to be most importantly of all, comfortable. It also allows me to take her out and feed her at the same time, as they put an IV pole on it for her feeding pump and her feeding bag and also allows me to hang her backpack oxygen on it.

We still have numerous appointments to Winnipeg. Emma goes to Neurology, Metabolics, Respiratory, her pediatrician, her ophthalmologist and the Rehabilitation Center for Children (which I also usually have to transport her really large equipment) in Winnipeg throughout the year. She also has a few appointments in Brandon, usually the doctor here, and all of our fun ER trips, which really add up in a year! Her PT/OT/ST come to the house now, as well as her OT from the Canadian National Institute for the Blind.

 

Emma still gets a lot of respiratory infections, due to her swallowing issues, and I’m sure the Trachial Malaysia is part reason. Since being home, Emma has went from a mere 15 pound girl that was first admitted into Brandon last spring, to a very big 41 pound girl!! She is such a strong girl and such a little fighter, and I am so proud and blessed to have her in my life.

Special and Determined

Jacob's birth story shared by his mom, Marla, of Special and Determined....

I was born March 22, 2006 at 1:32pm in Naperville, IL by cesarean section. I weighed 7 pounds, 12 ounces, and was 20 1/2 inches long. The picture above was my christening picture in the hospital before my shunt surgery (16 days old). I was born with a congenital heart defect called Tetralogy of Fallot, which is a congenital heart defect consisting of four different abnormalities.

Tetralogy of Fallot involves four heart defects: A large ventricular septal defect (VSD) - a hole in the septum between the heart’s two lower chambers Pulmonary stenosis - involves narrowing of the pulmonary valve and the passage from the right ventricle to the pulmonary artery Right ventricular hypertrophy - the muscle of the right ventricle is thicker than usual An overriding aorta - the aorta is located between the left and right ventricles, directly over the VSD. As a result, oxygen-poor blood from the right ventricle flows directly into the aorta instead of into the pulmonary artery

Before I was born, my Mommy and Daddy wanted desperately to have a baby. They went through a year of infertility treatments until it got to be too much for Mommy. One unexpected day after Mommy stopped treatments, she found out she was pregnant.

Mommy’s pregnancy was considered “high risk” because of her age. The obstetrician recommended a few tests to make sure all was okay with the pregnancy. Mommy had a Level 1 ultrasound which is also called a “screening ultrasound” to check that there is normal growth of the baby and to look at the location of the placenta and to be sure there is enough amniotic fluid. During the ultrasound the Perinatologist discovered a hole in my heart. He told mommy that there may be a possibility of Down Syndrome because of this, and asked if she wanted to have an amniocentesis to confirm.

Mommy didn’t know how to feel about all this information except scared and overwhelmed and she didn’t know how to tell Daddy. After Daddy and Mommy talked and determined that they were happy to be having a baby and whatever God blessed them with they would handle it with a loving and open heart, they decided against the amniocentesis, and just had my heart monitored over the next 5 months to see how it was growing.

Mommy did all the things that expectant moms do. Started buying clothes, got the nursery together, tried mommy yoga (that didn’t go over that well) and had a baby shower. She wasn’t going to let anything ruin the excitement she was feeling as an expectant mom, she had waited far too long to be a mommy.

My Birthday: Well it was the day for me to come into this world and everyone was anxiously awaiting my arrival. Mommy and Daddy got prepped to go into the surgery for my delivery.

And here I was blue, as was told to Mommy & Daddy by the Pediatric Cardiologist before I was born. Mommy was eagerly awaiting the scream, after a couple of seconds there it was. Daddy never told mommy until just recently that I wasn’t breathing when I came out.

I got to see Mommy for only a few seconds before they rushed me off to the NICU to evaluate me. After what seemed forever, the Neonatologist came to the recovery room to tell Mommy and Daddy of the heartbreaking news…I might have Down Syndrome, but it won’t be confirmed until the karotyping (test to identify and evaluate the size, shape, and number of chromosomes in a sample of body cells) blood test came back from the lab. However there were other characteristics that would give them an indication I had Down Syndrome. The Simian Crease on my left hand (The presence of a single transverse palmar crease can be, but is not always, a symptom associated with abnormal medical conditions, such as fetal alcohol syndrome, or with genetic chromosomal abnormalities, including Down syndrome (chromosome 21), and a large gap between the big toe and the toe next to it on both feet.

Mommy and Daddy were quiet they didn’t know how to react to the news. Mommy was thinking it was her fault because of her age and Daddy just didn’t say anything, except “I’m going to call everyone to tell them the news.” Then the nurse brought a picture of me to Mommy. Mommy’s eyes started tearing up, she could see it in my eyes that I had Down Syndrome. Her heart started breaking.

It seemed like forever since Mommy and Daddy saw me so they wheeled Mommy down to the NICU to see me. I was hooked up to monitors and had an air bubble over my head to help me breathe, but Mommy wanted to hold me.

After two weeks in the NICU and several issues with my oxygen levels falling too low, I was transferred to another hospital were it would be determined if I would need surgery.

I had a Blalok-Taussig shunt put in at 16 days old to help with the flow of blood, so I could get stronger to have my complete heart surgery (open heart) when I was 6 months old.

Well finally 3 weeks and one day after I was born I was able to go home. My parents were so excited to get home and start living our lives as a family.

As I was getting stronger Mommy arranged for early intervention to start. I had a physical therapist come to my house to help me start to get stronger and help me to reach my milestones. I was scheduled to have my complete heart repair at 6 months old and they needed me to be strong to go through this major surgery.

Mommy would sit in on my therapies with Darla the physical therapist to learn all that she could to help me get stronger and help me reach my milestones. This is mommy helping me to stand with the encouragement of my pray bear. She used the step stool since this would help me to learn to grab on to something and pull myself up. She was very creative in what she used to help me reach my goals.

You can read more about my first six months in my book “Jacob’s Journal – My Journey Home”.

Follow me and my growth as I am now almost 6 years old.

Dad, Look What I Can Do!

I know it's unlikely that any of you haven't already seen this video, but I had to share it anyway. :)

"A boy with cerebral palsy was told he'd never walk, but did just that when he saw his returning Marine dad."

Team Kellan

Meet Kellan:

Isn't he cute?! His parents are helping raise awareness and fighting for a cure for Angelman Syndrome. Please support them in their walk if you can. Information can be found here.

Wonder Baby

Ivan Kapi'i Bobnar was born June 11th, 2005. Soon after birth, Ivan was having trouble breathing, and, after hooking him up to monitors, we discovered that his blood oxygen saturation was very low.

We spent the first week of Ivan's life in the hospital, then we were sent home with monitors, oxygen canisters, and medication. The doctors were confused but assured us that he would grow out of these respiratory problems (which included apnea and reflux) as his system matured. We were very anxious but also very happy to have Ivan home.

His breathing problems did pass, but by the time he was 2 months old and not focusing on objects we were worried about his eyes. We were told to wait until he was 3 months old. He still wasn't focusing and that's when the crazy stream of doctors' appointments began. Most of his doctors assumed Ivan had LCA (Leber's Congenital Amaurosis), and that was confirmed with an ERG in July, 2006. (You can read more about our ERG and Ivan's LCA diagnosis here.)



Ivan is happy! In the summer of 2008 we attended an LCA conference and felt that Ivan, then three years old, just wasn't keeping up with his peers. So we began scheduling more doctors' appointments and tests and by late 2008 Ivan was diagnosed with Joubert Syndrome along with the already diagnosed LCA. Ivan began seeing a geneticist at Children's Hospital Boston and we soon discovered that he had a mutation on the CEP290 gene that is often associated with both LCA and JS.

But Ivan's trials weren't over. When he was about three and a half years old he began losing his speech and by the time he was four he was completely nonverbal. Ivan had gone from a boy who had over 100 words and was beginning to put two- and three-word sentences together to a boy with no language at all in about six months.

More doctors' appointments led us to a diagnosis of Landau Kleffner Syndrome, a language processing disorder caused by sub clinical seizures in the language center of the brain. Of all the diagnoses Ivan has received, this one was the hardest to take. LKS took Ivan's speech away from him, along with much of his physical and cognitive skills. Seizures are nasty, nasty things.

In 2010 Ivan had his first sustained tonic-clonic seizure and we knew his epilepsy was getting worse. It was a frightening day, and we are still playing the medication game trying to find the right combination and dosage. I'm happy to report that his last 24-hour EEG was spike free!

Through it all I've learned that regression is a bad word, but that it often comes hand in hand with disability and that we should appreciate everything we have now because life is fleeting. I'm also impressed everyday with the grace and strength with which Ivan faces his challenges and I am determined to help Ivan be the best Ivan he can be!

WonderBaby.org, a project funded by Perkins School for the Blind, is dedicated to helping parents of young children with vision impairments as well as children with multiple disabilities. Here you'll find a database of articles written by parents who want to share with others what they've learned about playing with and teaching a blind child, as well as links to meaningful resources and ways to connect with other families.

If you would like to link to WonderBaby, please click here.

I began this site in 2006 when my son, Ivan, was only one year old. He had just been diagnosed with LCA, a rare retinal disorder, and we were desperately searching for support and answers. At the time I thought it might be a good idea to gather everything I found into one place.



In 2011 WonderBaby teamed up with Perkins in order to provide more features and support for families through the internet. My original intent for the site was just to link to resources I found on the web, but before I knew it I was writing more and more about Ivan and all he had to teach us! I soon learned that other parents were experiencing this too... we all know that our children are full of wonder and they amaze us every day. As we focus on teaching our children all they need to learn in order to be as independent as possible we are often surprised to find out that we are learning so much from them!

If you want to share your story or have any ideas or advice for other parents, we'd love to hear it! Please contact us!

Peyton's Story

Peyton’s story begins long before she was born when her father, Travis, and I met in high school. We were high school sweethearts but before graduating went our separate ways. I went on to marry another for almost 8 years. He moved out of the state but remained single. Fifteen year passed before I contacted him. A year later I moved to California to be with him. Since both of our families were in Utah as was my job we were on our own without a safety net.

We knew we wanted children and because of our age, decided to get started immediately. We were thrilled to discover I was pregnant within just a few weeks of trying but just days later and only three days before our wedding – I suffered a miscarriage. But our hopes soared quickly when less than a month later we had another positive pregnancy test. We felt certain that it would be a girl. I remember hearing of the show Peyton Place as a child and loved the name. So just days after discovering the pregnancy we had named our baby to be Peyton mere weeks before Peyton Manning won the Super Bowl!

The pregnancy seemed to progress well until about the 25th week when I went into preterm labor. After some rest and fluids the contractions stopped but it was our first hint this pregnancy could be at risk. At about 32 weeks I surprised Travis with a 3D ultrasound. The technician had previously worked in a high risk maternal fetal group and was seeing some things that concerned her. She recommended we have the hospital perform another ultrasound. Within days of that ultrasound I got a call from my obstetrician recommending we seek yet another ultrasound at the high risk maternal fetal group in the area. After two ultrasounds that were concerning we weren’t surprised that after the third ultrasound was completed the geneticist wanted to meet with us. Peyton was showing signs of a syndrome but at the time they didn’t know which it was. She had micrognathia as well as several measurements that were smaller than average. Just weeks out from delivery the geneticist let us know that there was nothing more to be done and we would have to wait until after she was born to learn more.

On my hospital tour I had already discovered that it did not have the highest level NICU and with a potential airway issue I consulted my obstetrician about potentially transferring my case to another hospital but she did not seem concerned. I also recommended a scheduled c section to ensure all the necessary specialists were in place but also due to my mother’s history of barely making it to the hospital for delivery. Again, I was rebuffed so I hunkered down to wait for labor to begin. We had a few weeks to contemplate the news that Peyton may have some medical issues, but without any knowledge of the particular syndrome there was no ability to prepare for what was to come.

I was four days past due when my labor pains started. When I first realized they were contractions they were only 3 minutes apart. When I called my obstetrician she didn’t seem overly concerned since they weren’t very painful and suggested I stay home until they worsened. Within minutes of hanging up the phone with her they intensified and by the time we made it to the hospital about 15 minutes later there was no mistaking that I was in labor. I was only dilated to a one, though so they initially considered sending me home but just a few minutes after that assessment Peyton’s heart rate dropped. The room filled with people and after having me change positions her numbers returned to a healthy level. The scare coupled with my rapidly progressing labor, they decided to go ahead and put me in a room but just moments after getting me there Peyton’s heart rate dropped a second time and they were having a difficult time getting it back up. A quick decision was made to proceed to the operating room for an emergency c-section.

Initially I was focused on getting the epidural and as the painful haze was replaced by numbness I realized she was out but it was not like any baby show I had ever seen. They immediately moved her behind where my husband sat and I caught a glimpse of thick, black hair but no one said a word. I looked at my husband and above the mask saw my fear reflected in his own eyes when I kept asking why she wasn’t crying. He just shook his head because he didn’t have any answers either. Within moments he was hustled out of the operating room and I don’t remember anything else until I woke up in recovery later.

I am not sure how long I was out, but Travis had been taken to a small waiting room. During that time he made some panicked calls to family back in Utah. Eventually, a nurse brought him back to the NICU to see Peyton. Early on we were told that Peyton was in respiratory distress and due to her abnormally small jaw her airway was tiny. After reading her medical records, I later learned that the umbilical cord was wrapped around her neck twice and she had aspirated meconium, further compromising her ability to breathe. In that first hour, they tried twice to intubate her and were not able to so they had an ambulance on the way to pick her up and transport her to UC Davis Medical Center because they had the highest level NICU in the area. Before the transport team took her away, they wheeled her incubator to my room so I had a chance to see her. Travis had a few moments to check on me before he followed her to the hospital. My sister and brother were on a plane within hours of my husband’s call and they helped to keep me entertained while he was monitoring Peyton’s condition. Later that evening he returned to the hospital I was at and for the first and virtually only time, he broke down. I must still have been in shock because as he was crying I felt completely unemotional. I was so distant that my sister expressed concern to her husband on the phone that night. It wasn’t until the next morning when I called the NICU to check on Peyton’s status that it all came crashing down. When the NICU nurse asked me who I was I sobbed as I said, “I’m her mother”.

That first day, Travis had to make a decision to allow a breathing tube and a PICC line. I was released on her third day of life and had one opportunity to see her before we had to make the difficult decision to allow the doctor’s to perform a tracheostomy. I didn’t realize it at the time but I was suffering from a spinal fluid leak. Despite going in for a blood patch on the fourth day of her life, it didn’t work and it took a week before I could stand without agonizing headaches. But during that week, I refused to let it stop me from seeing her and after a 30 minute drive to the hospital each way, I would walk several football fields to get from the parking lot to her bedside with my head throbbing and recovering from the c section. It was my first taste of what it meant to ignore my needs in lieu of hers.

Within the first week of her life, the geneticist at UC Davis informed us that they believed Peyton had Nager Syndrome. It was very rare – at the time there were less than 100 diagnosed cases. There was no genetic test so the diagnosis was made on her clinical symptoms: micrognathia, abnormal palate, overlapping toes, fused bones at the elbow, shortened forearms and her craniofacial differences. We would later learn she had no ear canals and had severe hearing loss in both ears and also had aortic valve disease. Peyton would spend six weeks in the NICU and during that time she would have a feeding tube placed. When she finally came home our house was full of machines and medical supplies. We were so fortunate to have nursing because without any family or friends close we had a lot to learn.



In May of 2010, we moved to Utah to be closer to our families and we are currently living in Sandy. Peyton is now four and attending preschool.

She is still trached and still has a feeding tube. There is probably no chance of either being removed in the next several years. In the last year she was also diagnosed with asthma with her trigger being cold & flu. But despite nine upper respiratory infections over five months last year we avoided any hospitalizations. She is healthy and her airway is stable, in fact she can spend most of the day with a cap over her trach tube. She has had three hand surgeries and two jaw distractions and will have plenty more surgeries in her future.

Peyton is a firecracker with a very engaging, dynamic personality. She is outgoing and social despite her speech difficulties.

With the recent addition of an iPad with a communication app we are hoping she will have the ability to communicate more easily with others. Because there is no data on the likelihood of having another child with the syndrome, we have chosen not to have any additional children, but Peyton is kept company by her two furry brothers – Henry and Chili. She also has two sides of her family that spoil her rotten and embrace everything about her – we are so fortunate in that regard.

A few weeks before her birth, I started a blog and it became a source for family and friends to follow her progress. Years and eight hard bound books later, it is a baby book beyond anything I could have imagined. Not only does it track her medical progress but it gives a peek into her world – the good, the bad and the ugly.

We derive support from many sources – tracheostomy.com, the Nager and Miller Foundation, Hope Kids, and the blogs of other special needs parents and our family and friends. Finding the Kidz website is just one more place to feel acceptance and understanding and we are excited to be a part of it!

By Peyton's mom, Tracy. You can read more about their journey on their blog, Peyton's Place.

FASD

Hi My Name is Ann Michelle

I am the mother of two boys, Jeremy (12) and Kennan (7), both joined our family through adoption. Like pretty much everyone on your site I didn’t start my parenting journey thinking I would parent a special needs child. In fact we didn’t really understand what might be long term for my second son until a year ago. It has been a long journey to this point.



FASD

What is FASD?

Fetal Alcohol Spectrum Disorders
FASD: is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects can include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications.

FASD includes conditions such as:
¨ Fetal alcohol syndrome (FAS)
¨ Partial fetal alcohol syndrome (PFAS)
¨ Alcohol-related neurodevelopmental disorder (ARND)
¨ Alcohol-related birth defects (ARBD)
Fetal alcohol effects (FAE) * obsolete terminology.

What Are the effects of FASD?


The effects of FASD vary among affected individuals.
Outcomes associated with FASD can include:
¨ Specific facial characteristics
¨ Growth deficits
¨ Mental Retardation
¨ Heart, lung, and kidney defects
¨ Hyperactivity & behavior problems
¨ Attention & memory problems
¨ Poor coordination or motor skill delays
¨ Difficulty with judgment and reasoning
¨ Learning disabilities

“Of all the substances of abuse (including cocaine,
heroin and marijuana), alcohol produces by far the
most serious neurobehavioral effects in the fetus.”
Institute of Medicine, 1996.

Us

My husband, Delmer and I have been married 17yrs. We learned two years after our marriage and two miscarriages later that we had less than a 10% chance of having biological children. We decided with the Lord’s help that adoption was the way we would build our family and thus began our journey.

Our Family

Five years into our marriages we adopted Jeremy and four and a half years after that we adopted Kennan.

Our Story

When Kennan was first born he seem healthy and “normal”. There was nothing that noticeably indicated that there were larger issues that would rear their ugly heads in the future. Things that we noticed where not life or death and could be attributed to normal. He was born with a heart murmur and a herniated belly button. Both healed on their own. He was fussy and seemed much like a colicky baby. He did better with soy based formula and we assumed he just couldn’t yet tolerate the milk proteins in regular formula. He was hard to comfort, would arch his back when you tried to snuggle and he didn’t always like to cuddle. But, there are some kids who just aren’t as snuggly as others. As he grew into a toddler he became stubborn, uncooperative, and unwilling to entertain the word “no” if he was being restricted from doing something he wanted to do. People kept telling me this was normal “terrible twos” behavior. But it was different than anything I had experienced. My gut instinct told something was “off” and “just not quite right” but I bowed to those with more experience and hoped they were right about him out growing all the little things that we were seeing. Then came his preschool years. He was have trouble with language acquisition and speech problems. People would tell me he was hard to understand – even I had a hard time always interpreting what he was trying to say and I am a full time stay at home mom. When we finally were able to get him evaluated by a speech pathologist she couldn’t find anything wrong. But the problems persisted and he was evaluated again in Kindergarten with the same result. His behaviors had also slowly begun to escalate and he was getting more noncompliant regardless of what we tried. We ask about things like ADHD and ODD – but where told that most doctors will not evaluate for either of these until around six because many kids do grow out of these behaviors. Again I didn’t listen to my gut instinct (I’m a slow learner) and bowed to those with more “experience”. Kindergarten was difficult but he seemed to manage with help. Kennan had a hard time learning the Alphabet and an even harder time putting sounds with letters. However, he could “read” a number of sight words. Money and time were difficult (although this can be common in many kids). He had a hard time consistently remembering his basic shapes – but had his basic colors memorized. Days of the week meant nothing to him and forget months of the year. He couldn’t even tell you his birthdate. His teacher and we were seriously talking about repeating Kindergarten. But with lots of help he pulled it together and rallied to meet the benchmarks necessary to advance to First Grade. His behaviors also increased. He was becoming angry and aggressive when frustrated and would hit, pinch, kick, and bite family members when he didn’t get his own way. He would also attack his brother without provocation. By first grade things had escalated even more. Both my husband and I had noticed that he didn’t always seem to “get it” or learn from consequences – both natural and disciplinary. School was becoming more of a battle he was having trouble staying on task and completing work. Homework was nearly impossible because he would through terrible temper tantrums when ask to do it. We were now beginning to understand that we had bigger issues than what he would just grow out of. In September of 2010 I came across an interview on ABC News about a couple who were parenting a child with FAS. As I listened to this mother describe some of the things they were dealing with, with this child it dawned on me that what she was describing sounded just like many things we had seen in Kennan. I “Googled” FAS/FASD and what I began reading that day left me a bit numb and shocked. It was like the authors of these sites had been living with us for the past six years. They were describing my child. But, I felt a little confused too. The paper work that Kennan’s birthmother had filled out for us stated that she had not participated in drugs or alcohol while she was pregnant with him. However, I had a vague unsettling flashback to a brief piece of conversation I had with Kennan’s birthmother a few hours after Kennan was born. But six years had passed and I just couldn’t be sure if what I was remembering was accurate since the conversation was just in passing and had happened so long ago. I called my husband at work and ask if he remembered if Kennan’s birthmother had ever mentioned drinking while she was pregnant. He said he wasn’t sure it was too long ago. I ask him if he had time that day to look up FAS/FASD and tell me what he thought. When he walked in the door that evening the first thing out of his mouth was, “that’s Kennan isn’t it?” All I could do was nod. We knew that we needed to have Kennan evaluated, but where to start?

We took Kennan to our primary care pediatrician. She diagnosed him with ADHD – it would be the first of a growing list of disorders. This time however , I listened to my gut instinct. I knew from my reading that many alcohol exposed children are misdiagnosed with ADHD. So we kept pushing, slowly at first, and later more forcibly. We agreed to try him on Ritalin for three weeks. It made the aggressive, argumentative, and out of control behaviors worse – but only as the medicine was leaving his system. But it did nothing for the of task or lack of concentration behaviors. We then tried him on Adderall. This was worse than the Ritalin. He was explosive. During this time I had called our caseworker (at the time of Kennan’s adoption) and ask if he would please do some digging to see if we could find any documented proof that Kennan’s birthmother drank while she was pregnant. He agreed to see what he could find. About a week later he called us back and confirmed what we already suspected. Indeed Kennan’s birthmother had drank during pregnancy and she had also used cocaine. But, for Kennan the alcohol was the bigger issue. We do not have an amount, how often, or when during pregnancy she drank – just that she did. We were now into December and things came to ahead. When Kennan got out of school on the last day before Christmas break he went into a massive meltdown. It was on again, off again, meltdown for the next six hours. At nine o’clock that night I had him physically pinned to the floor in our living room to keep him from being able to physically attack me in any form. He was crying and I was crying. When I finally got him calmed down enough for us to sit on the sofa he turned to me and with tears running down his face he said to me, “Mommy, mommy, I don’t want to be this way.” It was like he had pierced my heart with a dagger. I cradled him and cried telling him how sorry I was that things were so difficult for him and promised him we were doing whatever we could. The next day we met with the pediatrician. We went armed with the evidence of alcohol exposure and some “mama bear” attitude. We took him off all the ADHD medicine and demand to be sent for an evaluation with specialist who could dig a little deeper.

In May of 2011 he was seen by those specialists. I wish I could say that we had all the answer when we left that day. Far from it!!! There is no “magic” blood test to determine if a child has an FASD and Doctors don’t like to give that diagnosis. When we finally got the medical report this summer Kennan added several more disorders to the ADHD. He is now listed as having ODD (Oppositional Defiant Disorder), SPD/SID (Sensory Processing/Integration Disorder), DBD (Disruptive Behavior Disorder) and an unspecified Learning Disorder with the possibility of an FASD (Fetal Alcohol Spectrum Disorder – more specific ARND (Alcohol Related Neurodevelopmental Disorder)). And if the Psychologist that we saw this last summer ( a whole other story) had his way we would add CD (Conduct Disorder) to that list. My son’s diagnoses are starting to resemble alphabet soup. So this Wednesday (Oct. 5, 2011) we are off to see the Geneticist for further evaluation.

Meanwhile my son sees an OT once a week for his sensory issues, we struggle with getting him to school and getting school work done (he doesn’t qualify for any services at school at this point because he isn’t two years behind – massive frustration) and we have just received approval to start our fundraising for his service dog (specially trained to meet his needs). And despite all the above disorders there are many people who still think he doesn’t have any special needs. You see when Kennan walks into a roomful of other second graders he appears (and often acts) like any other kid his age. He has learned to “keep it together” at school for fear of what other kids will say. Because many kids with FASD are like Kennan FASD has become known as the invisible disorder. They want him to,”just buck up, work harder, quit goofing around, stop being lazy, pay attention, stop the behavior, and just get the job done,” never trying to understand that maybe just maybe he can’t – he has brain damage and it’s permanent – that doesn’t mean he can’t be successful – but it does mean he might have to do it a little bit differently than many other children.

What I Wish

Guest post by Shannan of The Hoffman Family. Thank you for sharing, Shannan!




When Kate was about 6 months old, about two months after we initially learned of her challenges we would face, I remember taking her to an appointment at the Opthamology department at Primary Childrens Hospital. We were waiting in the waiting room to go back for our appointment. There was a family there, a Native American family that had driven about 5 hours up to the hospital for an appointment with their severely disabled daughter. She was probably about 8 years old, in a wheel chair, it appeared she was unable to communicate, had impacted vision, had her feeding tube pump hooked up, and seemed to be unable to move any of the parts of her body. I remember holding Kate and wondering about what our future would hold, would it be similar to this family? I saw all of the stares from others in the waiting room. As the room cleared out, and people were called back for their appointments, I heard the father mutter to his wife “They should just take a picture, it would last longer.” He was obviously upset by the stares and the whispers about his daughter.

Fast forward two and a half years later. As time has gone by and Kate has grown, it is now more evident than ever that something is different about her. Last night we went to dinner. We haven’t used Kate’s wheelchair much outside of church, since she still fits well in her umbrella stroller. We took her in the stroller. We looked almost comical, Ryan on his crutches, me struggling to push Kate, carry Eli in his car seat, and Maren struggling to get in the restaurant and sit down at a table. About halfway through dinner Kate started to fuss and Ryan had to get her out of the stroller and hold her while he ate. I couldn’t help but notice all of the stares from people in the diner, some of them curious, some of them sympathetic, some of them uncomfortable. It’s something I am used to now. It’s not uncommon to walk around with her in her wheelchair when we do use it and see people either avoid eye contact or trying to quiet their children who ask what’s wrong.

It doesn’t upset me like it did at first. If anything, it has made me more thankful for those who aren’t afraid of Kate. There are a few places that I feel very safe taking Kate. One is our ward. They are used to seeing Kate in her wheelchair and many of them come up and talk to her, touch her, get right down at her eye level and are very kind to her. Another is with our families. Kate’s cousins are used to her, they love her, they love to sit with her and make her smile. And the last place is probably at Primary Childrens. When you walk down the hall there, the doctors see her and they always smile and address her as we walk by.

It makes me thankful for acts of kindness. There is a sweet couple in our ward who have a granddaughter with disabilities like Kate’s. They always ask if they can walk her around the hall in her wheelchair when she gets fussy. Their faces light up when they see her. It’s not forced, it’s genuine love that they have for her. I appreciate that so much. It also makes me thankful for kind mothers who seem to know what to say when their kids ask what is wrong with Kate. We were at a party a few weeks ago and a friend told her daughter that Kate was extra special so her daughter knew to touch her and talk to her with extra kindness. I watched this little girl sit by Kate and stroke her hair and it just made my heart melt. This child could see the person that was inside of this little body.

What I wish is that others could all see in this precious child what we seen in her. There is this amazing little spirit trapped inside a body that won’t function. We get glimpses of this little personality every day. I have no doubt of the perfect little person that is in there. I have been thinking about what I wish could happen in our lives. I wish everyone felt comfortable enough to love Kate as much as we do. I wish everyone would feel okay touching her, talking to her, feeling her spirit. I wish people wouldn’t have pity on us, because we certainly don’t have pity for ourselves. We know we are the lucky one who gets this little perfect spirit in our home. I wish that all people could feel comfortable asking me questions instead of shying away or being uncomfortable. I know that is something that probably won’t happen all the time, but it’s my goal to help others recognize what a truly beautiful person my daughter is, inside and out. I like to sing the song “When you’re smiling the whole world smiles with you” to Kate because it’s true, when she smiles, I really think it makes people happy. She is such a blessing to us.

Special Needs Adoption

by Elizabeth Fennelly of Following a Call to Adoption

Special Needs Adoption? Me? I’d never have considered myself “special needs adoption” material. I’m a “planner” and, although I generally ignore it, the fact is that I’m freakishly analytical. I think, rethink and over analyze everything… to death! I’m the kind of person that keeps pros and cons spreadsheets and right now, the analyst in me is freaked out and hyperventilating, wondering how it’s possible that we’re preparing to adopt a functionally deaf and blind toddler. Yes, I checked “blind – okay” on my spreadsheet, but deaf? No, that certainly wasn’t on my list and deaf AND blind, you better believe that wasn’t part of my plan! I’d planned it all out. We would adopt internationally; we’d adopt two little boys that wouldn’t have a home without us, but came “no strings attached”. I wanted orphans because I couldn’t face the guilt of delighting in my child, knowing that my joy came at the expense of another mother’s broken heart. So, no, a local little boy with significant handicaps was absolutely not part of my plan.

Am I panicking? Yes, I get a case of the “panic attacks” at least once a day and I ask myself over and over what I am doing and whether I’m about to make a huge mistake, one that will affect not only me, but the person that I love like I never imaged I could and who loves me no matter how obnoxious I am, and then, there’s this little blue-eyed miracle baby that doesn’t know we exist. But, no matter how many questions the rational me asks and how many frightening scenarios my mind creates, I don’t care because I love this child and it is stronger than any of my fears.

Am I the special needs adoption type? Yeah, I’ve still got to say that I’m not, as far as I’m concerned, I’m not adopting a “disabled” child. I am in awe of this toddler, who is happy and curious, despite facing a cross that makes my diabetes seem about as burdensome as a cold. I am fascinated by his ability to adapt and interact with all the “normal” people around him and by the fact that, although most people would consider him completely cut off from the world, he is affectionate and loving, recognizing when his foster mom is unhappy and delighting in making her laugh. This baby, who qualifies as both deaf and blind, and, according to society’s perspectives, is nothing but a burden, has a set of birth parents that loved him so much that they gave him up for adoption when they realized that they could not meet his basic needs. In addition to his birth parents, my little boy’s foster parents absolutely adore him. His foster parents have cared for him through his “deaf, blind, will never crawl or walk, or talk” diagnosis and, with the determination that can only be found in love, refused to accept that he would be condemned to a wheelchair and taught him to crawl, and to walk, and to run. And then, here we are, two random adults that have never met this little survivor, but are prepared to love him forever, not because we’re preparing to talk about how wonderful our kid is doing in school or what a great career he has, but because “there is no me without you”. That’s three complete sets of parents that are prepared to step way beyond their comfort zones, two of whom have or will have their hearts broken by loosing this little “burden”, and accept that sorrow because they love him. How many children have that kind of batting average? This is an amazing child and, God and the Province willing, I will rejoice in being his Mom.




We adopted a special-needs child, not because he was the best we could do, but because he was an amazing child, who happened to have some special-needs. Although many of my wonderful child's disabilities turned out to be terrible misdiagnosis - he does not have Cortical Visual Impairment of the first order, but mostly seems to have suffered from vision delays due to the fact that his extreme GERD meant that he was on his back almost all the time and his optic section of the brain was compressed by his flattened skull. When we brought him home, we increased his protein and calorie intakes significantly and the resulting growth spurt decompressed the back of his brain. Now, while he stills has his bad sight days, his principle problems are the stroke he had at birth, which means that his little left foot is constantly on point, his GERD, which resulted in a fear of food and means that he is only now learning to chew at age 5 (but he is such a trooper and tries so hard, even if you can see that he is kind of scared of choking!), and the fact that he has profound hearing loss. (Being born at 25 weeks and weighing in at 700 grams will make life a little harder.) However, he is an amazing and incredible child. I am profoundly grateful and blessed to be his mother. He is the greatest blessing of my life and, while everyone thought we were crazy to start with our family with a special-needs child, I believe that society has it all wrong about these kids. Kids are not commodities or some success goal. Kids are the opportunity to love beyond anything we imagined possible and our special-needs kids both return that love in a way that leaves me absolutely humbled. I am a Christian Catholic, so that affects the way that I view everything, but, when my son loves me and forgives me for failing to be Mom of the Year, he offers me a direct glimpse into the generosity of God. My son loves me unconditionally and it is humbling to have such a tiny, and often mischievous, little boy offer me the help and example I need to get up from my fall, ask forgiveness and try again. People ask me how I survive as a special-needs adoptive mom and I tell them that what they're seeing isn't surviving, it's thriving and I wouldn't change my life for the world!

(I am also a special-needs, foster-care adoption advocate and I believe that 300,000 plus kids in care, waiting for families to call their own, is a tragedy that must not be ignored!)

4P Aussie Kidz

I was so impressed to hear that Ellie's mom, Melissa, started an organization to help others. I had to share a little about the organization as well as a touching video.....

4P Aussie Kidz is the only Australian organization that exists to provide financial assistance and support to families with children who have Wolf Hirschhorn Syndrome (WHS)

Wolf Hirschhorn Syndrome refers to a condition that is the result of a genetic error on chromosome 4. It is caused by a deletion of genetic material near the end of the short (p) arm of chromosome 4. This chromosomal change is sometimes written as 4p-.

If you are in the area and can support their October 22 event, go here to purchase tickets.

Marcus’ Story

Adapted from an old blog post by Sue of Lee Life and Lessons.

I’ll always remember October 2007. It was the month Marcus was diagnosed with Joubert Syndrome.

My pregnancy with him and his labor/delivery were uneventful. But when he wasn’t visually tracking and then developed an intermittent head tremor, we knew something was wrong. After seeing several specialists, we finally had him undergo an MRI and subsequently received the phone call that changed our lives. At worst, we had thought he had a vision impairment. But when the doctor told us of the diagnosis, she rattled off a list of challenges that “some – not all” children with JS face. So, in one phone conversation, we heard terms that no parent wants to hear: developmental delay, poor coordination, physical disability, mental retardation, vision loss, kidney failure. In her own words, she told us to rule out a “normal” life for our precious boy.



I remember Mike and I fell asleep in each other’s arms after crying and praying. How we got out of bed the next day remains a supernatural act of God because I felt like the news we heard the night before had strangled us to the point of suffocation. Even more miraculous is that we also went to the pumpkin patch that morning because we had already promised Audrey we would go. So we took pictures, cheered on Audrey in the bounce house, and picked pumpkins. Only the Lord knows how we got through it with smiles, when inside, our lungs had collapsed. It was purely the grace of God pumping oxygen in our bodies to be able to take each breath.
Marcus was 4 months old then and at that point had very little head control. He also had not developed his ocular motor strength/coordination at that point, so the possibility of blindness was still very real. His future was so uncertain and hope for him was very small. Needless to say, seeing a child in a wheelchair at the pumpkin patch made my soul drop even more. Later on that day, Mike went for a run and came back with tears after seeing a father teach his son to play baseball. We realized we wouldn’t be able to see the world the same again anymore.



One unexpected thing for me, that I didn’t expect, was how my identity would change. Being thrown into the world of special needs, I felt like I wasn’t just Marcus’ mom anymore. I was also his OT, PT, speech pathologist, psychologist, advocate, and nurse. I have often felt like I had to introduce myself to people as a mom of a child with special needs because it consumed my body, heart, and mind so much. But even though October 2007 has changed our lives forever, and though we can never go back to how it was before, and even though it is such a heart-wrenching and consuming journey, it’s so good to remember Galatians 2:20.

I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me.

Although often forgotten, this verse has recently been a sweet reminder to us. Knowing that we are bought with the precious blood of Christ, and that He now owns our lives is a comfort. Remembering that it’s not about our life, but about His life in us, is a refreshing reality check. Seeing that we don’t have to live this life perfectly, but to live by faith instead, is reassuring. That He loved us and gave Himself on our behalf so that we wouldn’t have to be swallowed up by this life is a relief.



It’s been 2 years since then. Two years along in our Joubert Journey, which means we are still just running our first of many laps. But it’s amazing how much we’ve experienced and learned since then. The breathing is still purely by the grace of God. And though we often get angry we can’t just breathe easily on our own like we used to, it’s good to know that we need Him desperately and that He provides His grace lavishly.

Unlocking Ian's Potential

This is such a sweet story about a cute little boy....

Having trouble seeing the video? Watch here.

All of Me

"All of Me"

All of Me lyrics by Matt Hammitt
(song available for download here)

Afraid to love
Something that could break
Could I move on
If you were torn away?
I'm so close to what I can't control
I can't give you half my heart
And pray it makes you whole.

You're gonna have all of me
You're gonna have all of me
Cause you're worth every fallen tear
You're worth faith in any fear
You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
Giving you all of me is where I'll start



I won't let sadness steal you from my arms
I won't let pain keep you from my heart
I'll trade the fear of all that I could lose
For every moment I'll share with you

You're gonna have all of me
You're gonna have all of me
Cause you're worth every fallen tear
You're worth faith in any fear
You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
Giving you all of me is where I'll start

Heaven brought you to this moment
It's too wonderful to steal
You're worth all of me
You're worth all of me
Let me recklessly love you
Even if I bleed
You're worth all of me
You're worth all of me

You're gonna have all of me
You're gonna have all of me
Cause you're worth every fallen tear
You're worth faith in any fear
You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
Giving you all of me
Is where I'll start

For the full story and to hear the full song, read this post on Bowen's Heart blog.

Praying for Progress

By Gail of the blog: Us, Dezh and Dravet Syndrome.

Nadezhda was born on May 19, 2007 after a fairly normal pregnancy, although she was 11 days early. She was 6 lbs 10 oz. She had a high fever of 103 F because I, her mom, had a fever of 104 F. Immediately she had a struggle to breathe and her blood-oxygen saturation level was much lower than healthy. But after 2 hrs she was perfect and healthy without any issues.



On the second day of her life she got jaundice and we used bili-lights to bring down her bilirubin level. At 4 months she started wearing a helmet to reshape her head. She wore this for 5 months total. We also started to notice delays at about 4 months. She couldn’t hold up her head very well on her own. She didn’t sit up on her own until after 10 months. She didn’t crawl until 1 year and didn’t walk until 22 months or so.



Her first seizure was on February 6, 2008. She had a slight fever due to getting her first tooth. This seizure was over an hour long. They gave her so many drugs to try to stop the seizure in the hospital that she had to be intubated. Every possible test was run with no reason for her to have a seizure. We were life-flighted to Primary Children’s Hospital where we stayed in the neuro unit for 4 days. We were sent home with instructions to use diastat if another seizure was to occur but they felt it was simply a febrile seizure and it was unlikely to happen again.

Two months later, on the last day of our first family vacation, we awoke to her having another seizure. I thought this one was caused because I put her in pajamas that were too warm for the warm weather. We were hospitalized in the same hospital for just 2 days this time. They sent us home with her on Phenobarbital for seizure control and a new rescue medication.

After this we had about 1 seizure per month that would land us in the ER and often require an overnight stay in the hospital. These seizures were usually caused by an illness with a fever. She seemed to have a very low febrile seizure threshold.

Eventually seizures started to happen without a fever. Also different types of seizures, besides the tonic-clonic and myoclonic, started to show up. We saw partial and complex partial seizures, which were often on just half of her body, or half or all of her face. We also saw these in just her eyes. She also had absence seizures, though these were harder for us to be sure whether they were seizures or not.

Our wonderful doctors at Primarys did some tests to figure out the cause of the seizures. When Nadezhda was about 1½ years old we finally had a "working diagnosis" of Alternating Hemiplegia of Childhood. This could only be truly diagnosed by the process of elimination, which turned life into a waiting game.



When she was just over 2 years old we moved to Kentucky and took her into the neurologists at the University of Kentucky. Our first doctors were great and willing to do many tests but wanted to start over to be sure no simple explanation for the seizures had been missed. However, we got a call from Nadezhda’s previous neurologist. She told us that she had just attended an epilepsy conference in Ohio and had learned about a disease called Dravet Syndrome that she thought fit Nadezhda’s symptoms very closely. She told us that if Nadezhda was still her patient she would pursue this diagnosis and suggested we ask our doctor to do the genetic test to find if this was her disease.

So we did ask our new neurologists to perform this test but they didn’t think it was likely to be Dravet Syndrome and that it didn’t fit her symptoms well enough to pursue, so they opted to start from the beginning and redo many test. Curtis, Nadezhda’s dad, was not willing to take this extra time and the step back to look at all the same tests again. He asked again with the same response. Somehow after our second appointment we got switched to a new neurologist, Dr. Khan.

At our first appointment with Dr. Khan, Curtis asked if he would do the test on Nadezhda to see if she had Dravet Syndrome. He thought for a moment and agreed that her symptoms were enough like Dravet Syndrome symptoms that it was worth doing the test. He made the appointment and we got the test done.

Just over 2 weeks later we got a call from Dr. Khan, telling us that her test was positive for Dravet Syndrome. We had another appointment with Dr. Khan where he explained Dravet Syndrome to us. He also told us that he had had 7 other Dravet Syndrome patients up north where he previously worked. He put Nadezhda on Depakote, which proved to be helpful. But soon after we added Clobazam, a med from Canada, which was also very helpful. She has also tried Topamax and Keppra but has been weaned off both these. We are starting to wean her off of the Phenobarbital now. It will take several months to finish with the Phenobarbital wean but we think it will be beneficial for her.




Now, rather than 30 minute seizures to 1 hour 45 minute seizures, they are 1 – 3 minutes long. She still has all types of seizures but they are much shorter and still only occur a few times each month. This is a great improvement obviously. She continues to progress physically and mentally although progression is slow. She has never digressed, thankfully, and we pray that her progression continues.

The Krommenhoek Family & The Puj Tub

I am so excited to introduce you to the Krommenhoek Family of the blog, Trach Ties. Take a visit to their blog for inspiration and about their daughter, Maaike, interesting stories about world travel, and even fun sewing tips! Here is a video that shows this delightful family and the Puj Tub, which helps them bathe their daughter despite her having a trach.

Dear Me

Guest post by Lisa of Welcome to Elijahland.



Dear Lisa,

It's going to be all right.

Yes, my dear, some of your fears will come true. The diagnosis you're so afraid of right now - cerebral palsy - will be a part of your life, as will a handful of others...hypoxic-ischemic encephalopathy, microcephaly, cortical visual impairment, pervasive developmental disorder, gastroparesis, and gastro esphophageal reflux disease.

And you know what? None of it really matters. Sure, you've just gone through a life-altering event. No one in your family will ever be the same. But, your life isn't defined by diagnoses. It's defined by the love you have for one another and the time you spend together. It's defined by dance parties in the living room.

If you could see yourself on a night three and a half years from now, I think you'd realize that you have an amazing life and that things are more than all right.



On this particular night, you've just discovered that your son likes to dance to top 40 music. You, your husband, and your precious Elijah are pounding your feet around the living room, clapping your hands, and squealing with joy. Tears wet your cheeks from laughing so hard. Joy fills the air intermixed with the beat of the music.

And even in the midst of all of this, during those moments where you are able to sit down on the chocolate brown couch and watch your two favorite men, you will think of the younger version of yourself. You will remember sitting on this very couch after bringing Elijah home from the hospital. You will think, "If only she could see me now. I think she'd know that it's going to be all right."

You'll be brought back to the present at the sight of your husband scooping up Elijah from the floor and spinning around. Squeals of delight and laughter. All three of us, our tummies hurting from our joy. Your life, Lisa, is a delicate mixture of love and grief and pain and joy. It's a beautiful dance.

Your breath is fast and labored, but slowly you put your feet back on the floor again. And you dance to music with questionable lyrics and laugh.

It's going to be alright, Lisa. It really, really is.

---------

If you could write a letter to your younger self, would you?

Eternally Grateful for Addie

Thank you to Jennifer of The Henderson Family blog for sharing this special story with us....

We hit the ground running and I would say that we never looked back, but that is not a true statement. We look back from time to time and see a fear that was so deeply imbedded in our hearts that we never thought our pain would subside.

How do you tell people that your baby has Microcephaly when you can’t even bring yourself to say the word? It took me 102 days before I could tell anyone Addie’s diagnosis. I was so driven from the moment of her birth to protect her from the world that the fear of judgment and rejection kept me from telling anyone the name of Addie’s diagnosis.

The little piece of paper that Addie’s diagnosis was written on sat on the dresser in my bedroom. It sat there collecting dust and I couldn’t bring myself to even glance at the word. The stigma of having a special needs child pushed me to avoid saying the name; all I could bring myself to tell people was that Addie “has special needs”.

Although there was no medical reason for me to believe that there would be something out of the ordinary with my unborn child, I felt it in every part of my soul. December 31, 2006 at 6:00 a.m., the deafening silence of the operating room confirmed what my heart already knew. My Sweet Baby Girl would have to fight for every accomplishment in her life and would always be known for her diagnosis.


Within two weeks of Addie’s birth, I had her set up for every available therapy that I could find for her. I spent virtually my entire maternity leave sitting in one practitioner’s office after another.

I buried the person that I used to be and I moved on.

I had a new goal in life and that was to educate anyone and everyone about Addie. I refused to allow anyone to disregard her and I refused to allow her to know anything other than pure love.

We hit the ground running alright.

My husband, Chris:


My son, Julien:


And I:


Have made it our mission to provide Addie with everything in life that she deserves and to give her every opportunity in life that any other child has, just in different ways.

We have settled into our new lives. There are days when I don’t focus on Addie’s disabilities and then there are days when the world feels like it comes crashing down. A friend told me not long after Addie’s birth that, “This life is not a broken dream, it's a different dream.” and so it is. My dreams vary from day to day. Some days I just dream of continued acceptance for Addie and our family and other days, I dream of being Superwoman, just so that I can take care of every worry in our lives.

Like most other parents of special needs children, we were given a very grim prognosis. The first neurologist spoke the words that could have paved the road for Addie’s future, “She will never walk, she will never talk, she will never function as a normal child”. He told us that he didn’t “mean to take away all our hope”, but that he wanted us to understand the facts. Instead of folding under those words, it was immediately decided in my heart that I would prove him wrong. I have spent the last four years doing just that..

The first year was by far the most emotional.


The unknown plagued my every thought. We worried constantly about every aspect of Addie’s life and the life that we were making for her. We made drastic changes to accommodate her potential future needs. We sold our home and moved to a home that would be more accommodating to the needs of a handicapped child. We bought a new SUV to accommodate the vast amount of gear that seemed to follow us wherever we went. We bought every item that could possibly benefit Addie in any way.
I spent countless hours researching and researching some more, looking for the answers that no one could give me. At the end of the first year, I allowed myself to realize that the answers would come only in due time. The only thing we could do was to push Addie to excel, to surpass all odds and to love her more and more each day.

I can’t tell you how many times I look in disbelief at the MRI images of Addie’s brain. I look at the photos and realize that the images before my eyes gives me no more insight to the life we live than the words that resounded through my heart as we were told that our child would “never function as a normal child”. Addie’s brain has several areas of concern, including an unusually small cerebellum, frontal lobe abnormalities and Cortical Dysplasia.

There are moments when all I focus on are the words that we have heard as people tried their best to predict our future. Then there are the moments when all I have to do is look into Addie’s beautiful blue eyes and I see the miracle that God has granted to us.



There is no scientific reason for the cause of Addie’s Microcephaly and we are at peace with that. It wouldn’t really matter if science provided us with an answer, we know that Addie is who she is because of God’s decision for her and HIS plan to place her into our arms. We are eternally grateful for Addie.

I tried to think of one story that would best describe our lives and Addie or that would make the most impact. It never came to me, I am still searching for a way to capture our lives over the last four years. If you are interested in learning more about Addie and our lives, please visit us at The Henderson Family.



(Professional photos courtesy of Kim Sharit at Kim Sharit Photography.)