Simple Things

We survived another Christmas here! Christmas is all about celebrating the birth of Jesus but boy it's a busy couple of days here. There were a few things that happened this year that were really neat. Jaycee actually opened all her presents. Her fine motor skills really make it difficult for her to rip the paper open sometimes. I tried to start every present with a rip for her to follow. Almost every year, I end up begging her and assisting her to finish opening her presents. Not this year, she did great!  She opened every present. It was such a good feeling. It's a simple thing to see her do. She was just like a regular kid shredding paper.

Not only that, she was really excited about some of the things she got. She would babble and hold some things up investigating them. She showed an interest in what she was getting. This isn't typical. Always before, if she got the paper off, she chucked the toy while I tried to "sell" it to her. It was great to see her happy and interested in this part of Christmas. If you have a child who wasn't interested, you would totally appreciate these milestones I'm writing about.

The best thing was that Christmas night brought in a blizzard of snow. Winters are always rough on Jaycee's breathing but she's healthy right now. So she got to actually go outside for about 10 minutes and play in the snow like a regular kid. I didn't have to worry about her wheezing. It was just fun. Normally, we usually end up bring snow inside the house for Jaycee and not allow her in the cold air. But the snow came at a great time for health. She loved it. Dad was tired from pulling her up and down the driveway.

These simple things are great! They are marks of progress. Here's to more sled rides.

Preparing for Christmas

My three year old is so excited for Christmas. He has a long list of toys he wants. Most of them involve items that go on a railway. He can't wait to shred the wrapping paper on his presents to see what hidden treasure is beneath.

Jaycee is different. Call it contentment or indifference. She rarely gets excited about a present. In fact, by the end of Christmas I'll probably be opening her presents because she's lost interest. The present aspect of Christmas has always been a difficult time for her and me. She's never really been into much of anything besides music and movies. It makes it difficult for me to find that "special toy" that people talk about. Ya know, that toy that the parent is so excited to buy for their child because their child has talked and dreamed of it.

Over the years I have struggled with presents for Jaycee. For the first 4 years of her life, most of Jaycee's presents were therapy or educationally related. I chose toys that would help her fine motor skills. I got her signing movies. In general, I got things that I could use to help Jaycee develop skills. She doesn't typically play with toys so I didn't see the point in buying "fun" things with no purpose. Those type of toys seemed to sit around and collect dust. 

Last year, I didn't go totally educational but I did get many items that she might like that would help her (like a trampoline). I have been very proud of myself this year. For the first time, I got Jaycee only fun toys with no ulterior motive. There's no educational value to an oinking pig or a singing Barney doll. It's a good step for me to let go of getting her things based upon advancing her development. There is a small window of time left to get all the fun toys in before she's too old for them.

Next week, we will see if anything I got her will actually be used or enjoyed.

Getting outside myself

It all started almost a year ago. I was faced with a decision. I felt God pulling me to start helping with the children's ministry at church. I wouldn't have a vital role and any huge responsibilities but I would have to commit to serving every Wednesday night along with some other women.

I thought of a million reasons why I shouldn't volunteer. Last year at that time, Jaycee was just coming out of some bad health issues and I didn't want to sign up and then miss all the time. Jaycee wears a bi-pap for her sleep apnea so every Wednesday I'd be battling that nightly issue later than normal. I sometimes get stressed taking the two kids out by myself (my hubby works long hours) because I never know when Jaycee might run off. I work on Wednesdays. I already feel tired and a little worn out every week as it is, do I have anything else left to give?

Despite all good sense and reasoning, I decided to go ahead and sign up. My husband was supportive. I had previously done a few years of youth ministry. That was before kids when I had lots of energy...that version of myself seems long gone, much like that pant size I was back then. I knew I needed to volunteer at the church because I needed to get outside of myself.

Volunteering is a great opportunity to look beyond yourself and meet someone else's needs. Most of the preschool kids there didn't have any significant needs. I can handle buttoning pants and building a tower with blocks. Watching the kids allowed the parents to worship in church without distraction.

The other adults serving along side of me was what I really needed. I go to kind of a big church. In a year, I only knew a couple of people. After volunteering, I got to come in contact with lots of people. Talking to these people allowed me to not carry so much. I was hearing about issues that were in their lives. I was thinking about their situations and praying for them. I remembered that I'm not the only person with problems and stress and a million reasons why I should stay home. It's good to be reminded of that.

The other workers asked about my life. A couple of them really genuinely wanted to know what my life was like with Jaycee. I could be honest with them. I could tell them when I was having a hard time. I nearly had a break down in that room when one of them asked about Jaycee starting kindergarten. I had a few people now on my support team. If Jaycee had an emergency, I had a few people I could count on to pray for her and send me a positive message. 

Some weeks are hard. When Jaycee is refusing to move from the hallway at church or when she's running away from me, I ask myself, "Why do I bother?" Then I remind myself. I have to think about someone else other than me. That is all the teachings of Jesus in a nutshell. It's good for me to spend a few hours serving someone who doesn't have my last name.  All in all, it's been a good year in that class! Now, get out there and serve!

Educating the Smart People

Who do you consider "smart?" Is it someone with at least average intelligence? Is it someone who makes good grades? Is it someone who can simply learn anything? What's the measure for you? 

I've been thinking about this lately because someone called Jaycee "smart." There are times when it comes up naturally in conversations. A teacher may say Jaycee is smart because she did a specific task or displayed a new skill. It's a compliment, and it's a natural thing for someone to say. It feels good.

There are times when it doesn't come up so natural.

I think because Jaycee doesn't speak, due to childhood apraxia of speech, that people assume she can't do anything. There are some things that are difficult for her, but there are some areas that she is good in. Before she was 3, she was signing colors, identifying shapes, and starting to recognize letters. She knew hundreds of signs as a toddler. I saw potential in her at a very young age. I knew she was capable of learning and that she was, in fact, smart.

Other people aren't around her all the time. They don't see what I see. They see a girl who looks different. They don't hear words coming out of her mouth. They don't see much of anything in her just from appearances.

But then, she'll get out her computerized communication device and say something on her talker. Sometimes it's something as simple as Jaycee requesting a food on her talker --"pizza please." Sometimes, it's her saying something cute like her meal prayer. Then, they will change their minds about Jaycee. They will say, "She's smart!"  But it's in that tone of complete surprise. Like, they were expecting her to do nothing.

I'm glad Jaycee can change people's minds. But I wish people wouldn't have such low expectations either. Jaycee has many challenges but she has many strengths too. She has a personality. She has likes and dislikes. I wish people could understand that. She is not a zombie walking around through life doing whatever she's told to do. She is a spunky, sometimes stubborn, girl who loves movies, music, and her family.

I wish when someone saw a person with a disability they would assume that they had a special talent, interests, or were just in general "capable." I wish people would assume a person with a disability was "smart" (whatever that means) until proven otherwise.

Most people don't feel that way so Jaycee & I will just keep working on that, one person at a time.

A Salt Shaker

Sometimes I just have to stop and take a breath. There are some things Jaycee does sporadically that really annoy me.

Some things just bug her which in turn bugs me. For instance, she hates pillows on couches and cushions on chairs. Before she sits on my mom's wooden chair, she throws that cushion down to the floor. We don't have a coffee table. But, when we are at a house with one, she likes to clear it off. It's embarrassing. It's like she's saying, "You have too much junk on your table."

Then there's the stuff she does at home. Sometimes she likes to throw my books off of my end table. She gets in a mood to throw the pile of blankets on the floor into a heaping mess. I don't understand why she hates clutter unless it's on the floor. Of course, getting her to pick her mess up is next to impossible.

Tonight, she was in rare form. Apparently, she decided to hand wash the throw pillow by placing it in the bathtub. Then she managed to get her dad's towel soaking wet by drying off with water still in the bathtub. Then, there was the strange act of her dropping the salt shaker into my water glass. Finally, she decided that some of my Christmas decorations were better displayed on the floor than on the cabinet.

Nights like tonight are a challenge. I have to stop and take a breath. I find myself saying "Help me Jesus." And I mean that prayer! Sometimes I get frustrated going from mess to mess. I don't understand why she does certain things. Of course, she doesn't speak so she can't tell me what she's thinking.

I'm trying to remember I can be frustrated and upset all night or I can take a breath and let it go. Now that it's been a few hours, it's kinda funny that she put the salt shaker in my glass!

Finding Thanks

Tomorrow marks another Thanksgiving. I've had thirty plus Thanksgivings in my lifetime. The past 6 years have been a love/hate relationship with Thanksgiving. I want to make something very clear: I love my daughter with Down syndrome. She is awesome. She has changed my life in so many ways. Jaycee is someone I am thankful for without a doubt.

With that being said, her health problems have robbed us of so much though: the certainty of her future, peace of mind, finances, the simplicity of certain things such as playing in the snow...  Her health problems (sleep apnea, asthma, heart issues) aren't her fault. She takes them in stride and remains joyful about life. But, her health issues often leave me feeling worried, pessimistic, and fearful. Sometimes, I have struggled to see any good in a situation. For example, someone might remark about the "blessing" that happened when Jaycee got out of the hospital. I was too busy stuck on--why did she have to be sick and go there in the first place. I would be so angry with God or fate or just life in general about her illnesses to see any good. I saw her hurting and her life being threatened. Yes, I was glad she was fine but I was too shaken to be magically happy about anything from that situation.

There have been some Thanksgivings in recent years when I have felt like I have had more to be angry or upset about than thankful. My attitude stunk! Maybe it was depression. Maybe it was exhaustion. I'm not sure what it was but the feeling was real.

I'm happy to say that this year I've had such an attitude change. I do feel grateful and thankful for many things in my life. I choose not to focus on the times she was in the hospital this year. I choose to focus on the majority of days that were spent at home laughing and having regular old life. I'm thankful that God has helped me look at things with fresh eyes and allow me to see the good in things again. Happy Thanksgiving!

5 House Rules

Today I'm going to give you our top 5 house rules. These rules have become second nature to me. In fact, it was hard for me to think of 5 rules because I just do these automatically without thinking about it. We do have to make many adjustments in our life to keep Jaycee safe. Here are the top ones:

1. Jaycee can never be outside alone.
Even at age 6 1/2 years old, Jaycee can't be trusted to be left outside alone. Maybe if we owned a fenced in yard, this would be a different story but we don't. Most of the time, Jaycee is fine outside. However, you never know when Jaycee will decide to take a walk down the road or step into the road to check the mailbox. Plus, we have a swimming pool outside which she thinks she can get into without supervision. The bottom line is that Jaycee doesn't understand dangers that exist.

When I'm at my brother's house, I enviously watch his kids run in and out of the house without supervision. His kids know not to go near water or the road. They stay close to the house where there is safety. His house feels like another world to me. I dream of the day that I can be in that world too.

2. Always keep the doors shut and/or locked.
This rule goes with the first rule. If Jaycee can get outside, she will go. The problem is, she doesn't tell me when she goes outside. Our front door is heavy so Jaycee can't open it. But if I decide to leave the front door open so the screen door can let air in, then I can expect Jaycee to make a run for it. It doesn't matter if it's hot or cold or if she has shoes on or not, she'll go.

To minimize the risk, we have furniture in front of one of our doors. Another door has a knob cover on it making it impossible for Jaycee to open. These are changes we have made to keep Jaycee safe. The doors are always shut or locked. I don't notice this being odd anymore unless someone comes over. If someone forgets to shut a door, I check to see where Jaycee is and then decide if I need to panic or not. That's when I realize that other people don't live like me.

3. The windows are generally always shut.
This rule isn't about Jaycee trying to escape. She's never tried to jump out a window. Ha ha! This rule is for Jaycee's asthma. There are a few times a year when we feel it's safe to open the windows. But during the mowing season and farm seasons, the windows are shut. We try to minimize the allergens in our house.

4.  Certain things must be kept out of reach.
There are certain things that have to be placed strategically to keep Jaycee from losing them or messing with them. If I leave my Bible out, she will surely rip those thin pages! But if I keep it in a drawer, she'll leave it alone. Car keys and cell phones are kept on the counter where she can't reach them. Otherwise the panic button will start sounding the alarms. She just likes the red button!

5.  The kitchen must remain "baby proofed."
I thought by now we'd be done with all the baby locks on the cabinets. But, they are still there. Some of it has to do with keeping her safe. Some of it has to do with keeping her from making a huge mess. Of course knives are something that must be kept out of reach. I cannot set the table before dinner and include the knives. Those wait until we are all seated at the table. Even if I get up to get more food, I have to move my knife out of her reach. A kitchen free of locks and safety latches is another foreign world to me that I hope to reenter one day!

Talking or some version of it

It's funny how a small chance meeting can set off a series of events that change your life.

Let's go back about 2 years ago. I decided I would attend a training on cochlear implants. I needed the hours. It sounded interesting but I didn't have a real reason to attend the training except that I'm a speech-language pathologist.

The training was taught by a speech-language pathologist (SLP) from Children's hospital. The same Children's hospital my daughter sees several specialists at. The SLP seemed so knowledgeable. I kept thinking that I should talk to her about my daughter.

I was so frustrated with my then four year old's language. She had a few basic words but signed hundreds of words. She could correctly sign colors and letters. She understood her shapes and was even beginning to sight read a couple of words. Yet, there were few words spoken after a few years of therapy from different SLPs and myself. I knew something else was going on because there was a significant difference between what Jaycee understood and what she said. This led me to one day seeing another SLP who worked in Jaycee's school district. She was considered somewhat of a local expert in our field so I talked to her about Jaycee. I told her my concerns and the signs that indicated childhood apraxia of speech. (Google this if you don't know what it is.) She assured me I was wrong. Jaycee was a typically delayed child with Down syndrome and low muscle tone. (Apparently, she missed the statistics that 10-15% of kids with Down syndrome have childhood apraxia of speech.) Be patient, she said.

I wanted to pull my hair out. Be patient while my daughter can't tell me basic needs? Be patient while she had a handful of people she could communicate with? Am I smarter than everyone else or is everyone right and I'm sooo wrong?

So, I found myself cautiously approaching the SLP from Children's at that training. Is she going to think I'm off base? I hurried up to the front to talk to the SLP before I lost my nerve. She was nice. I asked if there was any SLP at Children's who had experience with nonverbal children and could provide me some information. She put me in touch with her colleague.

Fast forward a few months. Jaycee is evaluated at Children's. She is diagnosed with childhood apraxia of speech, which was no surprise to me. That SLP gently encourages me to consider a speech generating communication device. Immediately, I resisted. I want her to talk. I want a magical treatment plan that will do something that hasn't been done in nearly 5 years now. I don't want her to carry around a device that will make her look different.

After the shocked mommy reaction, I stopped. I used my brain. I researched and read. I convinced myself this was the way to go. Ok, it's not what I planned but: no more signs, she can talk to EVERYONE now, no more of me trying to learn signs to teach her... 

Sometimes you have to recognize that someone may be smarter than you and take their advice. The process started to get her a device. That was almost two years ago.

Today, I watched my Jaycee do something amazing. During her school's tribute for Veteran's Day, she led the entire audience and school in the pledge of allegiance using her device. I sat there thinking about how far she's come in two years. Because of her device, she's had opportunities come up that have allowed her to participate with peers and in the community that would have been otherwise impossible. Every time she orders at a restaurant using her device or answers a question someone asks her, she's connecting with people and opening their minds about her.

It's amazing to think that one small act of courage to talk to an SLP at a training resulted in Jaycee doing a regular kindergarten school act today.

Letting go

These are no ordinary piles of clothes. This scene from a garage sale I had a few weeks ago represented a big decision.

When my husband and I talked about what our family would look like years ago, we envisioned three children. After Jaycee was born, I started questioning if I could handle the responsibilities of three children. Sometime last year (probably during 1 of Jaycee's 6 trips to the hospital) I concluded that two children seemed just fine. My husband hoped I would change my mind, but supported my reasons for the decision.

I gave my husband a list of reasons why a third child didn't seem reasonable: I haven't had happy, easy pregnancies, Jaycee's health issues & a previous miscarriage have left me a little reluctant to try again, the financial costs of Jaycee's medicine and medical bills never seem to go away, our house is cramped already, etc. But the major reason was that I didn't feel like I could handle balancing working part-time, the home responsibilities, and caring for three kids. I love my kids but some days are stressful. When Jaycee doesn't listen, runs off from me in a parking lot, and can't communicate what's wrong, I know I'm at my limit. Everyone has their limitations. I am very aware of mine and aren't afraid to admit them.

My husband brought up concerns for Elijah. Having another child might take pressure off of Elijah later on if he'd ever need to care for his sister as an adult. Having another child would give Elijah a sibling he could better identify with/find support with. I reminded my husband that there was no guarantee that this future child #3 would be perfect and healthy. The discussion went on many times. On something like this, both people need to agree to have another child and be willing to accept their partner if there's a difference of opinion. My husband is great. He let go. Well, we both did. Because, it was my dream to have a third child too. Even though I was the one who didn't think it was a good idea, it was still hard for me to come to the realization that we were done having kids.

Months after my decision, the tote labeled "maternity clothes" stared at me every time I went to the basement. As the kids outgrew clothes, I still packed them away as if I was going to use them again. As I tripped on the the jump-a-roo and baby swing, I wondered why I still had these. Baby blankets took up valuable drawer space. Baby bottles, pacifiers, and sippy cups.... It had to go. Holding on to this stuff didn't help me move forward.

My first step was to take my maternity clothes to my sister-in-law who was pregnant with baby #7. (She obviously has a higher threshold for noise and stress!) I dropped the clothes off and announced I never needed them again. I didn't care if she used them or not. I needed to get rid of them. I also needed to say it out loud to someone else.

Several months later, I decided to sell all my baby stuff at a garage sale. The clothes, the blankets, everything. Well, I kept a box for each kid to save blankets made by family members or a toy they really loved as a baby. Whatever was left from the sale was donated to needy families.

It felt good to let go. Our house isn't as cramped now either with all that stuff gone too!

Down syndrome: How I found out

This is the last post I'm doing for Down syndrome Awareness month. For that reason, we'll take another trip back in time.

When I was pregnant with Jaycee, I had no idea she had Down syndrome. I didn't do the optional screenings for it while I was pregnant. My ultrasound did not reveal anything. It missed the markers for Down syndrome, the hole in her heart, everything.. That was when the 4D ultrasound wasn't done regularly. So when Jaycee was born, I was expecting the regular baby experience like everyone else.

Jaycee was born and I still didn't notice anything. It was my first child. She looked all puffy from delivery. I was clueless. Much later that day, the pediatrician came to the hospital to check her out. That was my first piece of bad news:
   Your baby is having trouble breathing. She's under an oxygen hood. We've got a helicopter on the way to transport your baby to a NICU. (No big deal I thought. She is 3 weeks early.) I think I heard a heart murmur so they will check that out at the hospital. (I thought-Lots of people have innocent heart murmurs. This is still fine.) And I'm worried about some things on her body that indicate a genetic issue. Were you told about anything in the pregnancy or does anything run in your family? (Oh no! This is not a normal experience! Something's wrong.)

The pediatrician was concerned and compassionate. Maybe it helped that the pediatrician was a woman. I was cautiously optimistic when I left to go to the NICU. I clung on to hope because it seemed impossible to think something could be wrong.

The next day, my husband and I sat by our baby in the NICU. She was hooked up to wires and all sorts of stuff. It looked serious. It looked like we had a sick baby. I was scared to hold her. She seemed fragile. A group of doctors approached our bed. The main doctor was nice but to the point. He said: "If you notice, your baby doesn't look like your baby pictures (pointing to me) or your baby pictures (pointing to my husband). We are going to run tests but I don't need a test to tell me what she has. She has Down syndrome. She has many classic signs. Do you how she is a floppy baby? I can move her around and she doesn't resist me. (At this point he flops her around in different ways.) She has a line across the palm of her hand. She has a flat nasal bridge. There's extra skin on her back. She'll walk and talk but she'll get to a certain point and that will be it. You'll be raising a child all your life....."

I asked questions. I held it together until everyone left. I was shocked. I made it all the way out to the lounge where our parents were sitting. Then I had a complete breakdown.

****

There's no good way to find out your child has something wrong. It hurts no matter what. The part that broke me was hearing that Jaycee wouldn't look like me. It made me feel so disconnected from her. It took me a couple of years to "see" that Jaycee did look like me in some ways. I understand now what he was trying to say, but it was a horrible way to say that she would have features of Down syndrome. When he pointed out everything wrong, it was all I could see from that point on--the "flaws."

I've been trying to think of a good way to break the news but I'm not sure there is one. I think the most important thing is to sound compassionate and caring. You don't want someone to rattle off a bunch of facts and be matter-of-fact. Peoples lives are forever changed by this news and what is said initially sets the emotional direction. It's one of those conversations that I'll remember forever like so many other moms.

A Letter to Myself...Back in Time

Have you ever wished that you could go back in time and give yourself advice? I hope I'm not the only one anyway. In honor of Down syndrome awareness month, I have written a letter to myself in the year 2006 from myself in the year 2012.

Dear Evana in the year 2006,

Congratulations on the birth of your baby! I know you are feeling all sorts of emotions due to hormones, stress, and shock. You never expected to have a baby with Down syndrome at age 25, nor did you know it was even a possibility. Your emotions have you questioning lots of things. You wonder if your husband will stay with you (he will) and if Jaycee will live through all these challenges (she's still alive today). Due to the doctor's description of her, you wonder if Jaycee will even look like you or Jason. When she's a toddler, you'll find a mole on her head one day in a similar location to your own and it will change your life. Right now, you are under much stress so here is some advice.

The first thing you need to understand is that you will always, always have times when your emotions get the best of you. Right now, you believe that you haven't fully accepted Jaycee's diagnosis because things are bothering you. It will take you months before you realize that things are always going to come up that will cause you hurt or a sudden emotional reaction. The stares, comments, and cruel behavior aimed at Jaycee will always cause you pain. But, the good news is that the emotions do get less intense as time goes on.

The next thing I'm going to tell you is really important so fully digest this. Your first job is to love and nurture Jaycee,  not to be her developmental specialist. You have a team of people who help care and treat Jaycee's medical conditions and delays. As part of their job, they will offer ideas on how to help her. Don't let it overwhelm you. You are her mother first and foremost. You are not her teacher, nurse, or therapist though at times you have to be all of these things. Because you are trained as a speech-language pathologist, your brain will want to automatically go into therapy mode with Jaycee. You will see areas that need worked on and you'll take it on yourself to do much of it. Whenever you get stressed about things you need to do for her or the skills you need to work on, stop and take a break. This shouldn't be your main focus as her mother because when things happen much later than expected, you blame yourself. Those times of limited success aren't your fault. Six years later you'll still be trying to convince yourself of that.

Finally, take time for yourself. Motherhood brings on much responsibility. Jaycee's heart condition and special needs have multiplied that more than you'd ever imagine. You feel an enormous amount of pressure waiting for Jaycee's first open heart surgery. I'm saying first because unfortunately there will be another one. Don't look at this first heart surgery as the endpoint of her medical problems. There will be many scares and problems coming up. You will give more of yourself than seems humanly possible. Because of that, you need to remember that you need to take care of yourself. Don't make your husband wait for months for a date night. Given your mental state most of the time, you should feel honored that he wants to spend time with you! Time away from your home responsibilities will re-energize you. Don't let yourself get so wore down before you finally submit to a break. Take them preventatively before a mental breakdown occurs.

Every time you get overwhelmed, get this letter out and reread it. Remember to laugh. Enjoy your life. Count each day as a blessing.

Sincerely, The 2012 Evana

Good advice, Bad advice

Down syndrome awareness month continues! When you have a baby, people are quick to give you all sorts of advice whether you want it or not. From something as simple as feeding a baby all the way to immunizations, people have their own ideas about these subjects and they are willing to offer them to anyone who will listen.

I found the advice I received about Jaycee was multiplied. Because she came with several diagnoses, she came with a group of professionals telling me things about her and her needs. Some people knew what they were talking about. Some people thought they knew what they were talking about but didn't. So here's my top good and bad pieces of advice I received when Jaycee was a baby.

The Good Advice
1. Get your child all the help they need. When Jaycee was born with an extra chromosome, she was born at a disadvantage. She was already "behind" the other baby laying beside her in the nursery. There are many programs out there to help children like Jaycee reach their potential and achieve goals. She started the early intervention therapy program at just 2 months old. Over the years, I have sought out private therapy sometimes driving an hour 1 way just to help her attain a goal or skill that she was struggling with. Sometimes people made me feel like I was out of my mind for doing those things, but it was all for Jaycee. I didn't enjoy making long trips to Easter Seals or having multiple therapy appointments a week. I would have loved to have afternoon naps and easy breezy days with nothing to do. But, I knew those busy times of self sacrifice were only seasons for me that would be over soon and would hopefully bring help to Jaycee.

2. Seek out support. I'm a very independent person. I tried to hold a lot in during those early months when I was trying so hard to process everything. I'm not one of those people who will share my deepest emotions with just anyone while it is occurring. After Jaycee was born, I was open and honest with only my husband. Looking back, I am sure he would have appreciated me having another person to cry to and vent to when needed. I should not have put all of that on him. He was hurting too. Over time, I did find a few trusted people like my mom and sister-in-law that I could call and share all of my wild feelings and thoughts with. They listened, prayed, and gave me time to say whatever I needed. I found that sharing my pains with someone else made me feel better. I believe it's nearly impossible to parent a child with special needs without someone in your corner cheering you on.

3. Trust your motherly instincts. Yes, your child may have a diagnosis associated with them, but you are still their mother. As the mom, I know Jaycee best. I know what every little noise and gesture mean. I know when I see changes in her that aren't typical for her. I have learned to trust my instincts and speak up when I feel that there is a problem with her-- be it medical or school related.

The Bad Advice
1. Treat your baby like anyone else. This is a common phrase I have heard in the Down syndrome community. I never understood it from my perspective. Every time I heard that I should treat Jaycee like a typical baby, I wanted to scream. Instead I just smiled. I got good at a fake smile. It seemed totally impossible to treat Jaycee like anyone else. She had a heart defect, low muscle tone, and went into congestive heart failure when she was a couple of days old. She required all sorts of things that typical babies don't require (a feeding schedule, being woke up for feedings, higher calorie formula, medications, therapists, home health).

Even today, I do many things with Jaycee that most people don't have to worry about for a 6 year old. I can't leave my front door open or Jaycee will try to leave. Our doors are always shut and locked. She can never, ever be left outside alone. She still has to be reminded to use the bathroom. I can't treat Jaycee like anyone else or we'd have a major problem.

2. Don't compare your child to anyone else. This is good advice but who can do this??  For me, it was impossible not to compare Jaycee to other kids near her age. When I saw my younger niece take steps and talk long before Jaycee, it was hard. I didn't "try" to find someone to compare her to but when the ages are known, her delays were obvious. I took her to a baby/toddler play group a few times but I had to stop. It was too hard for me to see the other kids much more advanced than her.

The better advice I would say is that, when you see your child falling behind others, remember where she started out and how far she's come. It's not the comparing that's the problem. It's the emotions that come when the comparisons are made, which is why you need support!

Down syndrome Questions

October is national Down syndrome awareness month. You probably already know that Down syndrome occurs when there are 3 copies of chromosome 21. But over the years, I have been asked all sorts of questions about Down syndrome. Here are a few of the more interesting ones:

Is there something wrong with you because you had a baby with Down syndrome?
No. Nothing is wrong with me. There is no medical reason as to why I had a baby with Down syndrome. It just occurs. I didn't do anything in the pregnancy to cause it. It's something that doesn't happen very often but could potentially happen to anyone. The chances of having a baby with Down syndrome increases with maternal age but the majority of babies with Down syndrome (80%) are born to women under 35. I was 25 years old when my daughter was born.

Isn't Down syndrome hereditary?
Down syndrome is a genetic condition because it involves the DNA. Genetic and hereditary are not the same thing. There are actually 3 types of Down syndrome. A rare type of Down syndrome that can occur could be due to a parent being a particular carrier, but this is a small percentage of people with Down syndrome. When I had my daughter, I was told that I had a 1% chance of it happening again. So, in general Down syndrome is not hereditary.

How severe is your daughter's Down syndrome?
I get asked this once in awhile. There are no severity ratings with Down syndrome. You either have it or you don't. There is not a "mild case" of Down syndrome or a "severe case" of Down syndrome, although sometimes I hear parents saying this. There is much variability within individuals with Down syndrome. Think about your own children and the differences in their abilities. People with Down syndrome are no different. While some may have more significant delays than others, there are no severity ratings given. However, the intellectual disabilities (formerly called mental retardation) that people with Down syndrome have can be classified as mild-profound.

Is your daughter always happy?
No! She has a full range of emotions. Jaycee is a very happy and sweet girl. This is often said about people with Down syndrome. But, she has feelings just like everyone else. She gets scared when she hears loud noises. She signs "scared" when she sees tigers. She gets upset when I won't let her have seconds or thirds of food. She cries when her grandmas leave her (even though she sees them at least weekly). Jaycee gets excited when she sees her cousins. When she doesn't want to do something, she finds ways to let you know. She has likes and dislikes just like anyone else.

2nd Time Around

We have had a few milestones with Elijah lately. He started pre-school two weeks ago. I never thought I'd willingly put my three year old in school. I thought he'd be happy at home with me until he was five. I actually pictured that for all of my unborn children when I was a newlywed dreaming of kids.

When Jaycee turned three, it seemed like I had no choice. She had to go to pre-school. With her Down syndrome, she was so far behind and she needed all the experiences at pre-school that I couldn't provide (or didn't have the energy to do). So, she started the special education process right on her third birthday and received all of her needed therapies at school. I hated to send her to school. She seemed so small and young. We had been through so much together and it was hard to let go. Prior to school, Jaycee had only been watched by close family members. The school staff would be the first non-family people to watch my dear little girl.

Even though I hated the idea of sending her to school, I knew she needed to go. It would be good for both of us. I knew the school staff personally, which made sending her easier. We both cried the first week or two though when we left each other.

Flash forward a few years, it came time to have Elijah screened for pre-school last month. He didn't have a diagnosis or something wrong that absolutely made it necessary for him to start school so young. I did have  a few concerns with Elijah so I decided to get him screened in case he would happen to get in. He did get accepted into pre-school. I found myself getting ready to send my little 3 year boy to pre-school. This time was different. It was my choice. It felt like a happy milestone. I took him to school the first day. I may have had a few tears but it wasn't a heart-wrenching situation like with Jaycee.

This week Elijah started riding the bus. I never thought I'd send my 3 year old on the bus either. But, he's been begging to ride the bus ever since Jaycee started riding last year. (I cried my eyes out the first time Jaycee rode the bus.) He was so happy to get on it. I watched through the bus window as Elijah took a seat next to Jaycee on the bus. He had a huge smile. Then I realized I did too. It's funny how different things feel the second time around.

Don't be afraid!

I was reading Mark chapter 5 this week and had to share my thoughts about it. Verse 21 starts the story out by talking about Jairus who pleaded with Jesus to go to his daughter who was at the point of death. He asks Jesus to come and lay hands on the girl. So they walk along and in the middle of this a woman with an issue of blood gets healed.

As Jesus finishes up with the woman, someone came from Jairus's house and said, "Your daughter is dead. Why trouble the Teacher any further?"

As soon as Jesus heard the word, he said to Jairus, "Do not be afraid, only believe."

Jesus then allowed a few people to follow him to the house to see the girl. There's more to this story, which includes the daughter being made alive and whole, but I want to stop there.

It was interesting that Jesus did not stop the bad report from coming to Jairus. I mean, he's Jesus, he surely knew it was coming. He could have stopped those people if he wanted to, right? He didn't stop them. So Jairus heard that his daughter was dead. His people encouraged him to give up and leave Jesus alone.

Jesus responded only to Jairus. He did not refute the report. He told him not to be afraid & only believe.

I found it interesting that Jesus first spoke to be him about his fear. Jairus hadn't yet had a response yet but Jesus probably knew that a parent would naturally fear for their child.

Jairus is now faced with a choice. He can freak out because his daughter is dead or he can believe in the words of Jesus and keep it together.

The next thing I took away was that Jesus had Jairus walk away from those people who gave him the bad report. They did not speak faith and Jesus had to separate Jairus from them.

I have had my fair share of bad and evil reports about my own daughter in the past 6 years:

• Your daughter has asthma. She'll have breathing problems.
• She will need a surgery to fix this.
• If you don't do this procedure, there is a risk that she will die.
• Her immune system is weak. She's going to get sick easy.

Whenever I hear something bad about my darling little girl, I have a tendancy to get upset and let my fears take over. Jesus doesn't want me to react like that. He wants me to be positive, believe in Him, and separate myself from unbelief (whatever form it may take). This is a big challenge for me. After so many bad, scary health problems, it is easier for me to believe something bad is going to happen than something good. Yet, God wants faith to rise up in these moments. Too often I wonder why the bad event is occuring in the first place and get stuck in a pity party. I think Jaycee should never get a bad report. But things happen that challenge our faith. God is always the response in situations that we find challenging. Belief in Him and His word is always the answer and is the ultimate truth. Now, don't be afriad!

Wanting Something

To celebrate Jaycee making it through the hospital, we got out of the house last week for some shopping. It wasn't my husband's definition of relaxation and fun but he went along. We found ourselves at the toy store and told the children they could each get a toy. As soon as Elijah found out the store had Thomas the train items, he was elated. He likes loves Thomas the train. He's borderline obsessed with it. It doesn't matter if it's soap, toothpaste, socks, or a book--if Thomas is on it, Elijah wants it. Here, you get the idea:

At the store, Elijah had to figure out which toy he wanted. He was so excited at the enormous amount of train items he hasn't collected yet. He ended up with the a signal for his wooden track. 

Taking Jaycee to a toy store is a different story. The only thing Jaycee ever wants from a store is a movie. She's six years old, but she doesn't really have an interest in any kind of a toy. She's been that way for a long time. I have spent lots of money over the years trying to find a toy that she would love and play with on her own. If I sit and play with her, she'll play with different toys. If I leave her alone in a room full of toys, she basically scatters them or sits and stares at the wall.

I know it's hard to believe but it's true. I have thought about why she is like this many times. Theory number 1: She started receiving weekly therapy at just 2 months old. Jaycee got use to having people lead her through activities at an early age and became dependant on that.  Theory number 2: Jaycee's fine motor skills are very poor. Any toy that requires using the hands like puzzles, coloring, blocks are all difficult for her. I once got her an adorable baby doll but she got frustrated when she couldn't get the baby bottle in the doll's tiny mouth. Fine motor skills are used everywhere. You just don't realize it until you have a child with fine motor issues.

So, taking Jaycee to a toy store usually results in nothing. I will show her toys and she usually swats them away. Sometimes, she will choose a toy but then throw it on the floor which tells me she doesn't like it. A few times, a selection has made it all the way to the shopping cart only for her to throw it out. Jaycee isn't the typical child. She doesn't want anything really. Elijah is the opposite. He sees things he likes and wants them!

At the store, I went straight to one of her favorite characters, Olivia, a pig in a cartoon she watches. I showed her several Olivia items including a 3 foot tall stuffed Olivia. She got a smile on her face. She checked out the toys but vetoed the giant Olivia. She finally selected two small stuffed Olivias. She picked them up and sat in her stroller. She held the "babies" all during Elijah's long selection process. I waited for her to chuck them at any moment but she didn't. She held them in the van too. She wanted to take them into the next store we went in. It was great to see her actually want something. Elijah does this all the time but not Jaycee. This is the kind of thing we enjoy seeing her do because it doesn't happen often.

Has she continued to play with her babies? A little bit but a little bit is more than she usually does. It's great! Here she is with her babies:

Being a roommate in the hospital

We made it through another emergency and hospital stay. Jaycee is home resting and recovering but overall doing well. A week in the hospital conjures up all sorts of feelings. Exhaustion is one of them. The hospital we use is very good at accommodating parents. I was fortunate enough to have had a couch like bench to sleep on during that week. It beats the chairs in some of the other rooms. Unfortunately, the floor we were on was loaded with other kids having asthma flare ups.

That meant the inevitable...a roommate. I always hope we won't get a roommate but it generally happens. That's part of being in the hospital, unless you are blessed enough to get the coveted private room. I really dislike having a roommate. First, your privacy (what little you have in a hospital) goes to nearly nothing. Someone behind the curtain can hear your phone conversations and anything else you say. We have overheard some very interesting conversations over the years. Second, when you have a roommate the curtain dividing the two beds gets pulled across the center of the room. It makes the already small room feel even smaller. After a few days, I feel like I'm going to suffocate in that tiny space. Third, you are often subject to your roommate's schedule. Your roommate may be a night owl and you may be an early riser. This causes some problems.

We have had several memorable roommates. There once was a boy who had ADHD who was in the hospital for a few nights following a seizure. He constantly messed with his bed. I heard the bed moving up and down all day and all night. It was funny when he would go in the bathroom and pull the cord that alerts the nurses of a problem. He did it every time!

Then there was the roommate who had RSV. It was a baby, of course, but Jaycee was in the hospital with RSV (when she was 5 years old) for the second year in a row. Hearing Jaycee's story (because the roommates can hear everything you tell the doctor) and seeing her breathe hard really freaked the parents out. They called the doctors in and asked them if their baby was going to have problems later on and if it was going to die. They were crying and freaking out. They got discharged the next day, so I think everything was fine. I felt sorry for them; they were so scared.

I could go on and on but I won't. I do want to offer some tips if you are ever in the hospital and sharing a room with someone. Thanks for the idea Karen!

How to be a good roommate when your kid is in the hospital:
1. Ask the hospital when their visiting hours are. Our hospital is from 9 am to 9 pm. Use these hours as a guideline for how loud your tv should be or how bright your lighting should be.
2. Consider how long the other person has been at the hospital. You may just be staying one night and want to stay up late. Your roommate may had a rough week or even longer. They may be exhausted. Just because the curtain is pulled in the room doesn't mean they can't magically hear your tv or voices talking.
3. If a patient in the room is sleeping, please be courteous. The patient may need rest due to their illness. If a patient is asleep, do your visiting in another room or whisper. This is not the time for three siblings and a baby to visit!
4. It is most polite to ask your roommate before adjusting the heat/air or turning on/off the main lights. Jaycee is very hot natured. Yet, one of our last roommates insisted on having the room fairly warm because the mom was cold! Which takes me to the next point....
5. The time in the hospital is not about your needs mom & dad. Yes, you matter but your child amd the one in the bed next to them is the most important thing. Sacrifice this time for them. If your child wants to watch cartoons, don't argue with them. They are stuck in a bed in a small room. They aren't having fun either. Buy a magazine or cards or something to occupy your time. Make yourself available to your child. One mom I once shared a room seemed to constantly come up with a reason not to be in the room (smoke break, phone call, errand). The poor kid was alone most of the time but I'm sure the mom didn't realize it.
6. Please do not sleep with the tv on all night. I don't care how low the volume is, the sound will carry. If your child needs the tv to sleep, please turn it to the lowest volume or off after they are sound asleep.
7. There is a rule on most floors of our hospital that if a patient is potty trained, then none of the family should use the bathroom in the patient's room. Family members are suppose to go to the public bathrooms down the hall. Please do not ask the patient's family to move bathroom necessaries so you can use the bathroom.

If you do all of these things, you are well on your way to becoming a well liked roommate.

Things to do in the hospital

When there is a lot of down time in the hospital, here is what I do to pass the time:

1. I look at my schedule and plan things out for the next week. Get a game plan for when we get home.
2. Go to the gift shop or cafeteria. Find a snack I haven't eaten in a long time. I forgot how good runts are!
3. Clean out my purse. Ditch all the expired coupons. Why do I have so many tokens for Chuck E. Cheese?
4. Read through magazines that I don't have time to read at home.  Find a recipe I'll use at home later. Yeah, right!
5. Time to go through my emails. I finally delete old emails for good. I read through all the emails I saved that had long attachments.
6. Time to delete old files off of my computer. I delete documents I haven't opened in a year. This is something I never do at home.
7. Update all the family and friends through the internet, texts, or phone. I forget who I tell what to. Sometimes things haven't changed and I'm in a bad mood, so I don't tell anyone anything.
8. You tube: I never go on this website unless we are in the hospital. I watch music videos from Toby Mac.
9. Play solitaire on the computer. I generally lose.
10. Obsessively pick up things around the room. I rearrange stuff in the suitcase. I wish I had clorox wipes so I could really clean things up in her room. Then I wonder why my brain wishes for clorox wipes. Is there something wrong with that?

In Case of Emergency

As I write this, I am sitting in a hospital with Jaycee, watching her struggle to breathe. Her asthma, obstructive sleep apnea, and history of heart problems are a bad combination when she gets sick. Simple colds almost always turn into some sort of lung infection. We don't smoke or have pets. We adjust our lives to the point where we feel we are being paranoid to avoid all sorts of triggers that may set off her asthma. Yet, germs are everywhere. They are unavoidable. I know when I first see a snotty nose on her that we are in a potential battle for her health.

In six years, we have rushed her to the hospital several times,  usually for respiratory issues. It has become a familar situation for us. The moment we know we are heading to the hospital, there's a rush to pack everything we need. We live 2 hours from the hospital, so it's not easy to come home for supplies. Last year, I wised up and made a bag of all the bathroom neccessities (shampoo, perfume, toothpaste). This saves a lot of time during the pack rush. It's amazing how well my brain can remember things during the excitement. Phone chargers (check), money (check), movies for Jaycee (check), my schedule (check), clothes of course (check). I can do it all in well under 10 minutes. I once wore sandals to the hospital and regretted it. A week of sandals on hard tile floor was awful. Ever since then, I have remember to wear tennis shoes to the hospital no matter how dorky I will look.

Being in this situation and in the hospital is not easy. I'm not going to pretend like it is. However, we have done this so many times that it almost seems normal. The more we do it, the more familar we are with the system and just knowing what to expect. People usually wonder about how my husband and I cope with it all. We do have different opinions and feelings but in general we are both fairly calm. I'm typically the one who cares for Jaycee at home. I am the one making decisions about her doing her breathing treatments, when to take her to the doc, and trying to monitor her breathing to catch her before she gets really bad. So by the time we get to the hospital, there is almost a sense of relief that I'm not responsible for her care now. I can sit back and let someone else make decisions. My stress level acutally goes down once we arrive safely at the hospital. Sure, there have been scary moments in the hospital that have caused me to be worried and sad. Again, I don't want to make it sound like I'm always walking around the hospital with a smile on my face. That's not true. No one wants to be here or have their kid sick. But, I sometimes get the impression that people think I'm in her hospital room, crying and being depressed. That's just not the case. For me, the most stressful parts of her illnesses are times just before we end up in the hospital or the time we get home from the hospital because I am the one doing medications and not getting sleep due to her monitor beeping. So, that is some thoughts on emergencies that bring us to the hospital. Now, I'm going to try to take a nap!

Trying to stay Afloat

For six years, I have had the privilege of being Jaycee's mom. Together we have experienced things that the majority of people will never experience: open surgeries, heart caths, hospitalizations, being in the intensive care unit, respiratory distress, etc. Every year has had its set of challenges. Some were small (getting ear tubes) and some large (heart stuff). Some things that have happened have been expected. Many were not.

Each health or developmental issue that has come up has elicited a response from me. Some I have met head on, having faith and assurance that things would be fine. Other times, I have felt fear, stress, anxiety, depression, etc. These feelings could last a few minutes to a few days to a few months, depending on the severity. It's not an easy thing for me to admit but it's the reality. There has been health problem after health problem that it sometimes feel like our life is never quite "normal" for very long.

One day I got a mental picture of what this looks like. It's like I'm in an ocean treading water. I'm not drowning nor am I in immediate danger. But, it is taking lots of work to keep myself going. It is exhausting. There are times when I find something to rest on--a piece of debris that I can lean on. That gives me a chance to rest my tired legs and gives me a little support. I mentally and physically feel better but I'm still aware of the water surrounding me. Other times (when Jaycee's completely healthy), I am in a boat safe and secure. I'm completely at rest. I am happy and peaceful. Sometimes, a hole develops in the boat (I learn of a problem) and I begin to fear the time I'll be treading water once again. Other times, the boat simply rips apart (a sudden health crisis). I am suddenly back treading water working to keep myself afloat. Sometimes I am still very tired from the last time I was treading water, but it doesn't matter. I am back in this position and I have to do what needs to be done.

We got the sleep study results back this week and the results indicated her apnea is getting worse. So, I am treading water right now. I don't know how long I'll feel that way. I will pray, read scriptures, and do whatever it takes to help me find that boat so I can be in a better place for my family.

A Sleep Study

No, Jaycee did not fall into a pile of wires. This is a picture of her all hooked up for her yearly sleep study.  Jaycee has obstructive sleep apnea, which is common with individuals with Down syndrome.

Her apnea was discovered around age 3. Her enlarged tonsils and adenoids were taken out in an attempt to fix her apnea. However, it still remained. That's when we entered the fabulous world of c-paps and bi-paps. She wears these machines at night to help force air in to keep her airway open. Getting her to wear her c-pap and bi-pap masks has been a challenge at times. Maybe I'll get into all of that in another post.

Every year, Jaycee gets a sleep study done to determine if her bi-pap machine needs to be adjusted and if her apnea is better/worse. Sunday night we made our way to the hospital for her sleep study. We drove most of the way over to the hospital earlier in the day in order to keep her awake for the study. I took her shopping and had a fun afternoon out. I have learned that getting her a little more tired than usual helps the study go easier.

When we check in at the hospital at 7:30, Jaycee is excited to get into the bed and watch tv. She is familiar with this place now, but her first sleep study (when she was under age 2) did not go this smoothly. I get her pjs on and I feel out a large stack of papers. They contain lots of questions: Does she have a tv in her room? Does she sweat during her sleep? Does she sleep walk? Does she have nightmares? What are her medications?

Then the sleep technician comes in to start the hook up. There are several electrodes glued in her hair. She gets things placed on her leg, around her chest, and face. There is stuff everywhere it seems. They measure all kinds of things: snoring, leg movements, brain activity, oxygen saturation, etc. There is a lot to these tests! I have to hold Jaycee's arms down a few times, but overall she does ok with the hook up. This process takes about 30-45 minutes. Jaycee is tired after all of this. It's time for bed. She falls asleep really quick, which means I did a good job of wearing her out. After she falls asleep, a nasal cannula is put on. It annoys Jaycee. I have to sleep with her for the next 2 hours holding her arms down so she won't rip it off. Halfway through the test, the tech put Jaycee's bi-pap mask on. The doctors will later compare all of her numbers looking at no support and with bi-pap support to see how she did.

Morning comes and it's time to unhook. This process if faster. After several hair washings over several days, the glue will be completely out. Jaycee did great and is ready to start the day. I, on the other hand, am exhausted. I spend the rest of the day on the couch.

Look at all the wires. How can anyone sleep with that on?

In a few weeks, we'll get a phone call which will tell us the results. Hopefully we'll get a good report and we won't have to see the sleep lab for awhile!

Waiting Game

Yesterday, I took Jaycee to a doctor's appointment. That appointment was just like so many other ones. It started off with a long wait. 45 minutes to be exact. I often wonder if telling time or keeping a schedule is something taught in medical school. I believe most professionals skipped those days in school. If doctors and hospitals were a rare occurrence, then waiting wouldn't be a big deal. But, Jaycee averages 1-2 appointments a month now and goes more often when she's sick. So we have come understand why that room before you see the doctor is called a waiting room. You wait and wait. 

In six years, we have learned the ropes of the wait game. We know that if she gets labs we can expect a long wait there. Her cardiologist and pulmonologist is generally right on time. Her genetics doc usually doesn't involve too long of a wait. We need snacks and toys for the wait for the ENT and eye doctor. If she has to get an x-ray, that's always a toss up. Her regular doc could go either way too.

When Jaycee was first born and we started experiencing hospital life, we were quite frustrated with the process. I felt like I wasted so much time waiting. The really aggravating thing is I'll spend about 2 hours driving to the hospital (& a good 2 hours home) to wait for a long time to see a doctor for 15 minutes.  But...I have learned the process now. It is what it is. I can't fight it. For my sanity, I have to accept it.

In those waiting rooms, I think about the status of my patience level. It has improved over the years. There are times though when it becomes clear that my patience is really lacking. I make excuses for myself on why I have a right to be impatient but the reality is my impatience is a reflection of my heart and spirit. So yes, God can show us our heart and our attitude in a waiting room.

Wolff-Parkinson-White Syndrome: 1 year later

Last year a friend of mine warned about not sharing your testimony until your test is over. A few days from now marks the 1 year anniversary of Jaycee's heart ablation that "fixed" her Wolff-Parkinson-White syndrome (WPW). With that test over, here's the story:

It started in January 2011. Jaycee was home sick from school with her daddy. One of my clients wasn't home so I went home to eat lunch. I checked on Jaycee. She looked horrible and was acting strange. She was laying on her bed trying to fall asleep at 11 am. This was not typical! She was really pale. Thinking she was having an asthma issue, I hooked her up to her oxygen saturation machine. Her heart rate was 230. I thought it was broken or not reading right because that number was unbelievable. Jason and I checked her over and determined it was working and things were not good. 

We found ourselves in our local ER. I believe every doctor that worked there was in our room. I realized that it was suddenly very serious when they brought the crash cart in. Because Jaycee doesn't speak, I had no idea how long she had been in the fast heart rate they called a tachycardia. Phone calls to St Louis Children's hospital were made. A helicopter was in route. Medicine was given to stop the tachycardia. The first dose did nothing. The people in the room looked nervous. I thought "God is this how it's going to end." I was in shock. The bad part is that I sent my husband home to pack our suitcase. When he left, we didn't know it was that bad. We just wanted to be ready when the helicopter got there.

Another dose of medicine was given. Her heart rate immediately dropped too low and I remember the groans from everyone as we stared at the numbers. But as fast as it dropped, it came back up to 180. This was fast but acceptable. The crisis was over. I sat in a chair and did everything I could to keep my lunch in my stomach.

The next day at Children's we were told this was a rare, isolated event that probably would never happen again. We were confused but glad to hear that it was just a once in a lifetime thing.

A few weeks later, we saw her regular cardiologist though. After reviewing all the tests, he told us the alarming news that Jaycee had WPW. She had an extra electrical pathway in her heart. When it fired, her heart would do the same thing. It may be 2 weeks or 10 years before it fired again but it would happen. Her age of onset and tachycardia was unique. But the bombshell was that there is a risk of sudden death with WPW.

We have gotten a lot of bad news with Jaycee over the years but that was shocking. I cried and cried some more. Fear tried to creep in. I understood that the possibility of her dieing from it was small but it was still there. Every time I left her, there was that nagging thought that started with "What if...." It was a challenging time. If I would have listened to my fears, I would have quit my job and stayed with her 24 hours a day. I tried my hardest to stay positive and not worry. But I knew it was affecting me. I could tell it the most at work. I would be in a session and find myself struggling to keep my mind focused on what I was doing. I felt like a crummy therapist then.

Four months with this diagnosis felt like an eternity. We arrived at the hospital for her heart ablation that would "fix" her WPW. The doctors did their jobs. They were confident they got it and she was fine now. There is a small percentage of kids whose WPW heals itself and comes back. If we made it a year, we were good forever. I felt so relieved to have it over. I was relaxed for the first time in months. I figured she was fine.

A month after the ablation, we saw the cardiologist for her follow up testing. When he walked in our room and shut the door, we knew the cardiologist had bad news. Sure enough, she was in the small percentage of kids whose WPW came back. We had to wait a few months before doing another ablation. The waiting and wondering would have to continue.

August couldn't come fast enough. The ablation was repeated. The electrical cardiologist assured us that this time it was over. I was relieved again. The tension that had built for about 7 months was finally over. I can't fully describe how WPW affected our lives during that time. We tried to avoid sick people to keep her healthy for her ablations. We tried to avoid things that would increase her heart rate like carnival rides. That meant we didn't go to our usual state and county fairs. The emotional toll on me was indescribable. There was constantly a battle between having faith that things would be ok and being fearful of something that might happen.

It's been a year later; I can say that 2011 was the most difficult year we have had with Jaycee. (There were other things beside the WPW.) But we made it. It's one of those situations you find yourself in when you must rely on God to get through the minutes and days. So, here's to Jaycee's heart health for a year!

Jaycee meets a Favorite

When Jaycee was a baby, I went to a local Down syndrome conference and picked up information about a company called 'signing time' featuring Rachel. I had never heard of this company before. It sold videos aimed at teaching sign language to children. I got my first signing time dvd and then another and then another. Before long, we had a library of them. At first, I got these videos to develop Jaycee's language through sign. As her signing vocabulary grew, I depended on these videos more and more to learn new signs to teach her. I told her preschool about them and they began using the dvds in the classroom too.

 Last year, the signing time lady held a concert a few hours from our house. I wanted to go but Jaycee had several health issues going on. When I found out she was coming back this year, I was excited. A second chance!

I have a friend who also has a child with special needs. They too love signing time. "Hey do you want to drive 4.5 hours one way to go to a signing time concert?" I asked her. She said yes and away we went with our kids on Saturday. 

It was a little surreal being at the concert with Jaycee. She started signing before age 2 and we depended on sign language until she was 5. Now at age 6, sign is still a big part of our lives. There I was sitting in an auditorium filled with other signing kids. On stage was the one and only Rachel whose dvds and songs have impacted Jaycee's life so much. Jaycee was dancing on my lap with a huge smile signing along to the songs she loves.  Jaycee loved it. The music wasn't too loud so it didn't scare her. The lights were on for the signing, so there was no darkness to scare Jaycee. It was the perfect concert for her. 

As we scrolled through the pictures on the camera that night with her daddy, Jaycee signed "signing time" and got very excited!

I love having days like this. When I take my daughter to a fun event and everything goes well, it's great. There's no tantrums, confusion, or episodes of her running away, which is a miracle! It was just a normal day of everything going right. She's happy. I'm happy. We have a beautiful memory of this special day.

The miracle of VBS

If you read my last entry, you know that I was pumping myself up to be Jaycee's helper at VBS last week. All I can say is: What a difference a year makes! Jaycee didn't scream and cry and carry on. She adjusted to all the decorations and transitioning well. She tried to roam off a few times, get on stage, and do some random, unexplained acts. Overall, it was much, much better. It was one of those times when God taught me to take a risk with her and trust Him. It was amazing. I'm glad I took her back and didn't talk myself out of it.  The audience got a good show at the vacation bible school program Friday night with Jaycee trying to slap me while on stage and refusing to leave the stage. She wasn't done performing apparently!  Sometimes, you just have to laugh!

The touching part of Bible school for me was seeing Jaycee with a few of the kids in our group. In general, most kids tolerate Jaycee, a few are mean to her, and a few rare ones seek her out and befriend her. There were a few girls in our group that lead Jaycee around the church. They asked her to sit by them at snack. Jaycee didn't understand. She just sat in an empty chair. The girls moved tables to be with her. They asked me questions about her to see what her interests were. They carried her around and gave her horsey rides. Kids like that who work so hard to be a friend to Jaycee truly reflect God's heart. They pay attention to someone that is often ignored or ridiculed. That was a wonderful thing for me to witness as her mother. I am blessed to be in a church where Jaycee is accepted by so many kids. VBS was good for Jaycee and I in many ways! Can't wait for next year!

Giving Myself A Pep Talk

I have decided that I will be very open and honest with you about the thoughts churning in my head today and in the next few days. Next week is our church's vacation bible school. Jaycee attended last year and I helped out in another group. I believe my exact words on the last day last year were "I am NOT doing this with Jaycee again!" 

Times passed and memories of that event dulled a little. When they announced that it was VBS time again, of course I signed Jaycee and myself up right away. It would be hard but I had a few weeks to prepare myself. Yes, I know how ridiculous it sounds to be all worked up over a church event. Yes, I know God doesn't want me stressing about VBS.  The day is drawing near and I find myself in a mixed state of excitement and dread.  If you don't have a special purposed child, you might think that I am being neurotic.  Sometimes I even think that but I know I have a reason for thinking the thoughts that I do.

Jaycee doesn't like change. She knows routines and knows how things should look. She knows when she goes to church, she'll head to class. During VBS, her church routine is different. The church looks different too. I try to prepare her as we drove to VBS last year. "Jaycee, we are going to church school. We are not going to class. You will be doing something different but it will be fun."  I say it over and over again and using sign to reinforce it. She imitates me signing. I don't know if she's comprehending it or not.

Inside the church, the elaborate decorations captivated the other children at VBS. It confused Jaycee. She could not enjoy the beauty of the decorations because they weren't suppose to be there. During the large group meeting, the other kids were excited. They sometimes were loud. Some of the leaders encouraged the kids to shout. The other kids loved it. Jaycee covered her ears, cried, and even soiled her pants. She ran out of the church trying to get away from the noise a few times. She can't speak but obviously she was upset. Parts of it were simply not fun for her. I questioned if this was a good idea. Should I bring her if she's miserable and confused? Is this going to make her hate church? Is this doing more harm than good? Maybe she needs to learn how to function in these situations. Maybe she needs to know that sometimes routines/things change and she needs to know how to adapt. I hung in there, determined to follow through after making some adjustments for the parts that were just too much for her. On the 5th and final day, she smiled a few times. She did some of the motions of the songs. She was just getting the hang of it when it was basically over. Last year was rough but we made it. Although, she did not want to go in the sanctuary at church for several weeks afterwards. She threw herself down and started to cry whenever we stepped in the sanctuary. It eventually stopped.

So here I am a few days before VBS starts giving myself a pep talk. This year will be better. She's a year older. Things will be fine. I can do this. She can do this. It will be fine. God, give me ideas on how to make this go smoother!

Tune in next week to see how it went....

ME, ME, ME, ME, ME, you

Things happen in your life that changes your perspective. My perspective changed enormously when Jaycee was born. Having a child with a permanent disability and health problem after health problem changes how you look at life. Here's one example:

Before Jaycee, I had read the story of the man healed at the Pool of Bethesda (John 5) many times. The story is about a man who has an infirmity for 38 years. He spent his time at this pool of water because "an angel went down at a certain time into the pool and stirred up the water, then whoever stepped in first, after the stirring of the water, was made well of whatever disease he had."

He told Jesus that he had no one to put him into the pool when it's stirred and that someone steps in front of him.  Jesus tells the man to get his bed and walk. He man did it and was healed.  What I mainly got from this story is that the man suffered a long time and his healing came in a way he didn't expect.

After I had Jaycee, I got something new from this story. I thought about that man and the other people who stepped out in front of him. He suffered for 38 years, surely the people around him knew it. Obviously, the other people felt they needed the healing more. There were some pretty sick people there who were "blind, lame, paralyzed." To step in first, you got your healing. But, that also meant that other people (maybe worse off) did not and would have to wait.

So what did that story mean for my life? It's very easy for me (& probably other people too) to become very self-absorbed in the middle of a health crisis. When Jaycee had a health issue arise when she was a baby or toddler, it would affect my emotions, thoughts, and attitude towards life. OK, it still affects me but not at the same intensity. When I would hear about another person's health problem, I literally couldn't take it in. I had my own problems and it was all I could handle. I couldn't deal with anything else. Most likely, there were some people I should have stepped up and supported in times past but I didn't because I felt I couldn't. Not only that, I would get very irritated when someone complained about a health issue that was sooo not a big deal comparatively.

This story reminds me and challenges me. No matter how "bad" things are going, no matter what craziness is going on in my life, I need to stop and take a look around at the people I encounter. There may be someone in need whose being ignored by everyone else. Self-pity and self-centeredness only gratifies one person but a life looking outward can reach an unlimited amount of people. This is a lesson I'm challenged by often and hope to have perfected at some point in my life.

Securing a Special Purposed Child

On Good Morning America this week, they did a segment on parents who "leash" their small children to keep them safe while they are out and about. Seeing this issue being debated brought back old memories.

I never thought I'd be a parent who used a child safety restraint...ok a leash. I tried desperately not to be that parent. I was warned by other parents who have children with Down syndrome. "You'll want them to walk more than anything and then you'll wish they'd  just stay put," they told me.

"I won't be like that," I thought. "I will be so grateful when Jaycee walks; I won't wish that." 

A few months after Jaycee started walking, I asked myself why I wanted her to walk in the first place. She started wandering off and not responding to pleas to "stop."  How did this happen?

If given the slightest opportunity, Jaycee would take off. She was not a kid who would run five steps and then look for mom. She would take off and go. She didn't care where we were. Jaycee had no concept of danger. She didn't understand strangers, getting lost, or the possibility of a car hitting her. She just didn't understand.

After much internal wrestling, I found myself accpting the fact that Jaycee had to be secured if we were in public. She had to be in her stroller or on the leash. 

I almost choked while swallowing my pride when I purchased the first leash for Jaycee. I looked for a "Parents who Leash their kids" support group. But, I didn't find it. I felt that if I leashed my kid, people who saw it would think I couldn't control my child, my parenting skills were poor, and I was just a bad mom. Sometimes, I can be my hardest critic. Maybe people thought that, but no one ever said anything to me.

The leashes were a necessary evil for a time. Eventually, Jaycee started to get too big for leashes and we often ended up just getting into tug of wars while trying to go opposite directions. Although our home has been leash free for some time, the safety issue still remains. Jaycee still runs off and tries to leave places without me. I don't know how many times I will have to remind her to wait for me, always hold my hand, etc. before she will understand. I'm still waiting for that day....

In the mean time, when I am out with both of my kids, every move I make is calculated. I try to get Elijah out of the car first so Jaycee can't run off during the short time it takes for me to use both hands to undo his car seat. I hold Jaycee's wrist instead of her hand the majority of the time; it makes it harder for her to suddenly pull away from me. Jaycee is always the first person in the shopping cart or the first one in the car. If I need a free hand to open a door, I never let go of Jaycee's. Elijah will stay with me. Jaycee would use a split second like that to run free. You know it's bad when your two year old yells, "Sissy, where are you going? Come back."

I tell people that I have to give myself a pep talk before I leave the house with both kids by myself.  I say it as a joke but it's kinda true. She has gotten better since she was that curious toddler trying to explore her surroundings. However, it's still an issue that my husband and I deal with everytime we leave the house with her.

So, the moral of this story is: When you see a child on a leash or running away, don't be so quick to judge the parents. If you see me chasing after Jaycee in a parking lot and you are closer to her, feel free to join in the race.

When your child doesn't speak

A few weeks ago, my niece AJ tried on Jaycee's glasses. "I'm Jaycee," she said. AJ is about 9 months younger than Jaycee.

"OK," I said "You can be Jaycee and Joel can be Elijah." We role played a few minutes. When AJ started to speak, I stopped her. "Jaycee doesn't really talk remember." I decided this would be a great teaching moment.

She shook her head and covered her mouth. AJ loves to talk, so this was a challenge! After a few minutes, she said "Being Jaycee is hard."  Bingo!

Jaycee is 6 years old but can only say about 10 words. Most of them are simple words like "papa" or "mama." Problems associated with Down syndrome cause delayed language. Jaycee's language is considered really delayed even for Down syndrome. She has an additional problem called childhood apraxia of speech. The neural pathways from her brain to her mouth are not strong. She desires to speak but it is extremely difficult for her mouth to produce speech like any other kids. If you think about how complex producing speech is...it's a wonder anyone can talk.

Some speech sounds are produced with the lips, some with the tongue forward, some with the tongue back, some require nasality, some are voiced (g), some are voiceless (k), etc. etc. All these different movements are not innate in a child with apraxia. They must learn how to produce a sound or a word (using cards, mirrors, maybe a hand moving their mouth to the right spot, etc) and repeat them until the pathway is set and "remembered." Jaycee's brain automatically remembers how to say "mama" now easily. On the other hand, "dada" is very inconsistent. Sometimes, she'll try to imitate dada but it comes out "mama". Other times, her tongue is searching for the right spot and she just makes a grunt noise. The point is, she desires to speak, but it is really hard and frustrating for her.

Fortunately, Jaycee has her communication device and sign language to communicate with us. She can use those methods to label objects or people, answer very simple questions (when she wants), request what she wants to eat, drink, watch on tv, and get my attention. 

Still, there are times when I find myself saying, "I wish she could just talk." There are times she literally laughs out loud when she's asleep. I would love to know what she's dreaming about. There are times when she's dancing to the music in her head. I wonder what song she's thinking about. I'd sing it for her. She's attempted to grunt out "I love you" and she has said it (at my request) on her talker. But, I wish it would come out of her mouth like my son. When she's sick, I would love to know what hurts and how bad. I would love to know about anything she's done when I'm not with her. Whether it's at church or school, she can't tell me what she has done. I'm left asking her my usual question, "Did you have fun?" She usually answers yes or no with a head shake.

So, when your child doesn't speak, its important to have all those other communication methods. Whether it's a hug, a sign, a communication device, a wave, a facial expression, or one of her made up gestures, it allows me to learn about her. I'm constantly looking for those little insights.

Whenever she does say something new, it feels like a miracle. She started saying "amen" out of the clear blue this year and has managed to keep this word in her inventory. Jaycee started saying "mom" to mean grandma and "mama" for me. It's a step forward. It's something to get excited about. It gives me hope that one day she'll be able to tell me all of those things I want to know.

So long teeth...

2 baby front teeth + 2 permanent front teeth= 2 too many teeth present 

I remember anxiously awaiting for Jaycee's slow to erupt baby teeth to come through a few years ago. The last few months, I have been wanting 2 of them to fall out. Funny how your feelings change in these situations.

After two heart surgeries, teeth being pulled seems like a small procedure. Still, I woke up today with a small knot in my stomach. I know Jaycee will be scared today and there is no way to prepare her well for it. 

Last night, we put Jaycee to bed and I tried to explain to Jaycee what would happen before we prayed about it. "Jaycee, you have 4 teeth right here. You should have 2. You are going to the dentist tomorrow and she is going to take 2 teeth out. You will be fine." Jaycee opens her mouth and points to her teeth.

Ok, she knows we are talking about her teeth, but who knows what she got out of my little speech.

This is when her developmental delays are an advantage. She doesn't get worried about what will happen. She's not asking for details.  I'm the only one who is mulling over what is going to happen.

Sidebar: Ever since I got my Fearless shirt from our church chic night meetings, I have been wearing it when Jaycee has a doctor's appointment or some other potentially stressful appointment. The front says "fearless" and the back says "fear not, for I am with you. -God" Our meetings have been about fear, a subject I'm always needing wisdom on. The shirt is a good visual reminder for me not to be afraid.

I had my fearless shirt on as I walked Jaycee down the hall of the dentist office. She sat in the chair on her own. This is a good start. The bib was placed around her neck. For the first time ever, she leaves it on. Then the nasal gas mask needed to be placed. This is the part I was dreading. She doesn't understand what is happening and why. She looks scared. Like in so many other procedures, I help pin Jaycee down. The gas is on and Jaycee is calm in an instant. It's magic gas! 

In no time, Jaycee's baby teeth were in an envelope and it was over. Could it go that easily? Well, not so fast...As I was paying, Jaycee left my side. I thought she was going to play with toys in the lobby but no. I got to her just as she shut the door and was standing on the sidewalk. No matter how distracted I may be by what is happening, I can't let my guard down for a minute. I broke my golden rule with Jaycee while we are out, keep her confined or hold her hand.

It's over and done. Thank God everything went good. In case you are wondering, Jaycee will not be getting a visit from the tooth fairy. She doesn't know she's missing anything but my bank account does. Haha!! Until next time..

Here I Am!

Well, I have been thinking about starting a blog for some time now. Thinking about it doesn't actually get anything done.

So, welcome to my blog I'm calling "A Special Purposed Life." This is a phrase that came to me while I was sitting in a church class last year. The phrase had a significant meaning to me at the time. When you have a child with a disability, "special needs" is often used to describe the child. It's nice, gentle wording that people automatically understand. I don't have a problem with the "special needs" terminology. Trust me, it's much better that a lot of things my daughter has been called.

But, in church life I have wished that there was something else I could call her. "Special needs" means she has needs that are different from others. It implies she is lacking something, which is an accurate description. Jaycee is more like a 2 year old (at best) than a 6 year old. Yet, in all that she cannot do, there are many things that she can do. Most people just don't take the time to find out these hidden gems in her life. Her life has a value and purpose, though sometimes difficult to see because of her many needs. She is here for a reason.

Jaycee is no different than any of us. We are all here for a purpose. Jaycee's purpose is a unique one much different than the majority of people around her. She indeed is special for that reason. So, by saying "special purposed" instead of "special needs" it sends a slightly different message. Jaycee's life is not defined by her many needs. Her life is defined by the unique purpose she was created for.  

Thanks for reading. I hope to share with you my experiences and thoughts as I journey through life with my special purposed daughter. 

**I urge you in the sight of God who gives LIFE to all things...1 Timothy 6:13