When you Wish Upon A Star

Dreams do come true!

A couple of months ago, I did some research into how a child is granted a wish through the Make -A-Wish Foundation. In Massachusetts, I found out that either the parent/legal guardian, the physician, or the child itself can nominate a worthy child. So being a bit inquisitive, I nominated Tyler. Now this nomination process was simply me sending them my contact information.

Well roughly a week later, I was contacted to provide more information on Tyler, including medical diagnosis. So I promptly replied with all the appropriate information. The next day I received a phone call asking for Tyler’s doctor’s information as based on the information I provided they were going to proceed. I was jumping out of my skin giving them the information but didn’t really want to get too excited as I still wasn’t sure of the whole “process.” This was a Wednesday I gave them the information.

On a Monday, in late June, I received a phone call at work first thing in the morning letting me know based on Tyler’s doctor’s information that he was eligible to be granted a wish. Well you can bet I burst into tears at my desk. My manager came over to say good morning only to fins me wiping tears from my eyes. After I explained what they were for, she too had tears in her eyes. This just seemed so surreal. You hear stories every day about children being granted wishes from Make-A-Wish but for it to be our family. HOLY COW!!!

So we had more papers to fill out and forms to sign. The morning of July 24th, the day we would be leaving for our week vacation, we had a wonderful volunteer come to our door, gift in hand for Tyler, to come meet him and find out what his wish was going to be. So Tony and I filled out all the appropriate paper work and we told her what his wish was. Now keep in mind that July 24th was a Saturday.

On July 26th, I had gone up to the cottage to get something and noticed my cell phone was beeping as if I had a voice message. Mind you we have next to nothing for cell reception, and I was with my family, so I couldn’t imagine why I would have a message. So I listened and immediately again burst into tears. It was our volunteer saying Tyler’s wish was approved and he was being granted his wish. She was so excited for us that she hand delivered our paperwork and they approved his wish on site!!! Well let me tell you, that was the best news to receive on vacation.

So I know you are all dying to know what the wish is right? Well it’s not a trip, as that really wouldn’t have any meaning for him. It’s not meeting a celebrity, even though Tony insisted that Tyler wanted to meet some of the Red Sox players, as again, this just wouldn’t have any meaning for him. Instead, Tyler wished to have…….drumroll please………………………………………………..

 

That’s right, a pool! We knew this would serve him well for many years to come. He receives physical therapy all of 1 hour a week for 5 weeks over the summer. We knew this would help in keeping him cool and hopefully keep those pesky seizures at bay on the hot hot days. And we knew this would be such a great social thing for him to have so his typically developing friends can come over and play and not be bored with his non age appropriate toys.

As you can imagine, tears were POURING down my face when I took this picture. The pool was installed last Friday. It finished filling with water on Saturday afternoon, and it has rained every day since! The sun is supposed to be out this weekend and the warm summer temperatures are also supposed to return. Check back as we hope to have some in the pool shots to share! Until then, continue to make wishes…..

3 Weeks

~ 3 weeks from today my baby starts 1st grade.

~ 3 weeks from today my baby will be going to school full day.

~ 3 weeks from today I will be home alone all day 2 days out of the week.

~ 3 weeks from today I no longer have a baby but a big boy.

How did this happen?? Where has the time gone??? It seems like just yesterday we were getting him ready to go to preschool. And now, 1st grade! Granted it’s not traditional 1st grade but the fact that he will be gone from 8:30 – 3 has my head spinning. I have been away from him for that long since I work every day. But 2 days a week I get to spend from 11:30AM on with him. I am going to need to find things to fill those empty hours.

I hear so many of my friends who have typical children be so excited that their children are gone and that they have time alone. They talk about always wanting to get rid of them as the kids “drive them crazy”. They talk about longing for school and after school activities to start. This has me always cringing. They should be enjoying every second possible with their kids! But I regress.

Over the next 3 weeks, I vow to devote as much attention to Tyler as I can. I will enjoy every second I have with him. And while he drives me crazy sometimes too with his behaviors, I vow to take a deep breath and count to 10 before getting upset. I have only 3 weeks to play outside in the afternoon on the swings. I have only 3 weeks to play ball in the afternoon. I have only 3 weeks to prepare 2 lunches. I have only 3 weeks to enjoy nap time together. I have only 3 weeks to make more wonderful memories with my little man.

There is another side of me that is looking forward for 3 week from today for:

~ the house can now get thoroughly cleaned.

~ boxes, from 5 years ago when we moved in, can get unpacked

~ my craft area can get organized

~ I can dedicate time to my photo greeting cards

~ I can dedicate time to my Longaberger business

~ I can take time to work out

~ I can take time to work in the garden

~ I can bake

~ I can create healthy, delicious meals for the week

~ I can sit and read my books.

3 weeks from today, life is going to change…..for the better.

Back to reality…

Last week was our yearly family vacation. Every July, the 3 of us, my parents, my brother and his girlfriend all head to New Hampshire where we rent a cottage right on Lake Winnipesaukee. To sum up our week:

great food….family overload…fabulous shopping…lots of wildlife…fabulous wine…gorgeous weather…seizures…lots of swimming…breathtaking views…lost wallet…relaxing walks…quality time with Tony…lots of laughs…found wallet…no internet…finished a book…no cell phone…quality time with Tyler…perfect

But you be the judge…this is the view from the room Tony and I stay in. We got to see this every morning…

Time for a Change

Lately I have found myself down in the dumps. Could be that I am still trying to juggle working 40 hours a week and maintain a clean, healthy, home. It could be that one of my childhood friend’s sister is lying in the ICU after a horrific motorcycle accident. It could be that a special needs little boy, that I didn’t know but was a classmate of one of Tyler’s friends passed away after suffering a seizure. It could be that I find myself missing my Grammy and Tony’s grandparents. It could be that many of my friends are having their second babies and I know if I could have more, we would be too. It could also be that Tyler’s seizures still are not under control. Our lives are based on how Tyler is each day. Planning a trip now involves making sure we know where the closest hospital is and making sure we have enough medication with us before taking off. I feel so confined because of these horrendous events that have entered our lives. We have to plan hour to hour instead of day to day or week to week.

But these feelings needs to change. Yes I am allowed to still miss people that have passed away. Yes I can still feel concerned for those who are sick. Yes we still will need to make sure we know where the hospital is and have our medication but why should that stop us? There are millions of people out there that suffer from seizures. Some of these people work, some of these people even drive. They are not confined to the walls of their house. They live their lives to the fullest. And isn’t that how we are supposed to live? I mean Tyler wouldn’t be doing half of the things that he isn’t if we didn’t make the most out of each and every day for him. We can’t stop doing that now. He will regress if we do.

Before Tyler was born, I would say I was a faithful Catholic. I went to church weekly and said daily prayers. When Tyler was born, I did say my daily prayers, as we needed him to get through everything but I found myself having a lot of resentment. And each time I wanted to start opening up and thinking about going back to church, something painful would happen again and I found myself angry. Loosing 4 grandparents in one year, Tyler developing behavioral issues, Tyler having intestinal virus’, Tyler developing seizures. It was all too much and it was easier to be angry at HIM as I knew he had my cards in his hand.

But today, when I woke up, something came over me. Something inside of me said that I need to start believing again. For the last 6 years, I have heard from numerous people that God only gives us what we can handle. And every time I heard that, I cringed. I have always thought I was tough but what we were given has always felt like too much. I have felt suffocated and confused as it felt like too much for 2 people to handle never mind one person. But today, as I watched Tyler sit in his chair and play ball with me something finally clicked. I need to start believing and letting God guide me through each and every day. I need to trust that there really is a plan and it isn’t up to me to figure it out. Some would say I am a bit of a control freak and I now realize that part of my trouble has been that I can’t control things with Tyler and that leaves me feeling lost. I don’t like not being able to plan things and fix things and do things the way they should be done. I have finally come to accept this and I feel like a huge weight has just been lifted.

I am sure there will be days that I feel overwhelmed. I think that is natural being the parent of a special needs child. But I can no longer let my internal issues run my life. Tyler is going to be 7. He is going to be going to school full day in the fall. My baby is growing up so quickly and I need to enjoy every possible second. I need to capture more things on video and in pictures. I need to write more accomplishments down. I need to relish in the miracles that he has already accomplished and those that he still will. I have been given a miracle and that needs to be celebrated! I know 6 years ago I never imagined we would be doing this…..

San Antonio is calling

At work today, this story was posted about a brand new handicapped accessible amusement park!! Everything is geared towards children with special needs from the sensory garden, to swings that accommodate wheelchairs, to the bathroom. You name it. It’s for THEM!!! And get this, the kids get in FREE. Yes you heard me correctly FREE. The genius behind this idea is a Dad of an autistic girl names Morgan. He named the theme park after her! So cute. Not sure when we will be making our road trip but thought  I would share this with all of you out there. I suspect lots of road trips will be made!!

Morgan’s Wonderland

Dreams DO Come True…

Thinking back to when I found out I was pregnant, like most women, you start dreaming about what your child will and will not do. And when we found out we were having a boy, Tony’s dreams turned to sports of course. I remember him saying how he couldn’t wait to play catch with him in the yard, and take him to hockey practice, and of course get him out on th golf course. I kept telling him that we wouldn’t pressure our son and he could play whatever it was he wanted, even if it mean nothing at all.

Then of course comes the day he was born and all those dreams went out the window. We would be lucky he could walk let alone swing a baseball bat or golf club. As the years went on, it really wasn’t a big deal. But then of course Tyler’s classmates invited us to their TBall games, and we saw neighbors load up their cars to head off to soccer. I don’t know if it ever bothered Tony to see that, I am sure it did. I know I couldn’t feel a little hint of jealousy and disappointment every time I came across a situation like this. But I just tucked it in the back of my head and reminded myself how lucky we were to even still have Tyler with us.

We live pretty far away from Boston, and have found there aren’t many options of sports for kids like Tyler out here. We discovered through friends that there was a Challenger baseball league but of course, nothing out our way. Seeing pictures of our friend’s kids “playing” we of course had that feeling of sadness that Tyler would never experience that. That was until a good friend of ours let me know there was a league starting up in the town next to us. I RACED home and emailed the woman right away. I couldn’t believe our luck!!!!!

We had a parade 2 weeks ago. The there are 2 teams with 6 kids on each. Most of the children have Downs Syndrome. Tyler is the most involved but the kids do not care. In fact, he gets kisses and hugs from 2 of the girls ever time they seem him. It is priceless to say the least. Due to inclement weather last week, his first game was yesterday. Take a look for yourself. Who says dreams can’t come true….

My Silver Lining

One of the blogs I follow regularly is that created by Kristen about her daughter Cayman. For the past few days, Kristen has been blogging about the silver linings in her day to day situations. I thought how I longed to see the silver lining in our current situation with seizures. There really isn’t anything happy about them or enjoyable or anything. But the more research I did, the more I realized how I can help Tyler on a daily basis. I realized that many parents had success in reducing the number of daily seizures simply by changing the child’s diet. Simply by eliminating things that we shouldn’t be eating anyway such as artificial colors, flavors, and dyes. Could this be my silver lining in this nightmare? I am hoping so. No I KNOW so!!!!

Yesterday I went through the cabinets and started throwing away things such as pop tarts and nutri-grain bars, and some condiments. I found myself spending almost an hour in the organic food section of our grocery store picking out new snacks for Tyler. While I do a lot of cooking from scratch, there are some things that he eats that are certainly not good for him. He is strictly a finger food kid so snacks for school are limited to fig newtons and nutri-grain bars. His breakfast choices are also limited to finger foods such as bagels, english muffins, pop tarts, and homemade waffles and pancakes. And for desserts if I haven’t made cookies or brownies, then he is limited to oreos, store made cookies and brownies, and of course fruit.  I was shocked to find out the number of artificial flavors and ingredients in condiments, cookie mixes, bread mixes and more. I guess I have become naive to this but then again, I never had a reason to thoroughly read a label.

So sure, I could take this situation as a very expensive situation as we need to completely restock our cabinets or I could see the silver lining. And I chose to see the silver lining. Why should I be putting these chemicals in our bodies let alone his? ********** This is a warning as this part is disturbing….the artificial flavor vanillin that is used in oreo cookies comes from paper mill waste!!!! *******Why is it that over 60 years ago, there weren’t these ingredients and there weren’t the number of health issues as there are today? Sure it’s going to be a drastic lifestyle change but it is so worth it. Yes Tony and I need to really watch ourselves now, as we will be using real butter instead of Country Crock, and we will be using real maple syrup instead of “artificially flavored” syrup and these clearly pack more of a caloric punch than the lower fat chemicals we have been using. But when I sit and read how thousands of parents have seen a drastic improvement in their child’s temper, behavior, and overall well being when eliminating these simple ingredients, how could this not be good for us? And I read that in many cases it has helped improved nystagmus! I am not counting on this as the be all and end all cure to all of Tyler’s issues. But, if it can help him just a bit, and maybe we can reduce some of his medications, and make him healthy since everything is all natural, why wouldn’t I make this change??? Thank you Tyler for once again opening my eyes and seeing what is important. Thank you for seeing that while you continue to struggle daily, that Mumma and Daddy can try help you in addition to your medications by eliminating chemicals from your daily diet. Thank you for pointing out my silver lining in this chaos. I love you.

Seizures stink

If you remember, a year ago, Tyler was diagnosed with complex partial seizure disorder. He was put on medicine and things were ok. Around Christmas, he started to have more seizure activity during the day. The doctor increased his medication and things seemed fine. In January, his seizures started to become more complex. They started lasting around 30 seconds and he started shaking with them. We called these “bad” episodes as they were traumatic at least for us. The doctor wasn’t overly concerned when we went to visit in February and he said he might need a medicine increase if his levels were low. Tyler had come down with a sinus infection during February vacation so we had him tested a week later. That bring us to a week ago.

Wednesday, March 10th, started off as a normal day. Tyler had a “bad” episode at 6AM then fell back asleep. I woke him up at 7AM for school. He was super happy, pretty vocal, and filled with smiles. He ate a good breakfast and was ready to go for school. We get dressed in his room on school days. I got his diaper changed, socks on, onesie on, pants on, then a “bad” episode struck. But this “bad” episode lasted longer than 30 seconds. It lasted longer than a minute. It was going on 2 minutes. And his whole demeanor changed. His face was making these weird contortions. He was having trouble breathing. And I was alone. I still get him dressed on a changing table so I had to carry him, seizing, across to our bedroom and put him on the bed so I could call 911. They were there within seconds. Panic completely set in by this point. By the time the paramedics arrived, Tyler was out of this chaos. And thanks to my neighbor who ran over to help, I was able to call Tony, and put shoes on. I was after all supposed to be going to work after I dropped him off at school. Off we went in an ambulance to our local hospital. Tyler had a panicked look on his face while I tried to remain calm. We arrived to the hospital around 8 and were in for a battery of tests. They drew blood, did a CT scan, and a shunt series on x-ray and more. Everything turned out fine. The ER doctors consulted with his neurologist in Boston. The verdict, increase his medication by 1 mL. I wasn’t 100% confident with this decision but knew his neuro was consulted so I opted to sign the discharge papers. That was 3PM. We dropped the prescription off on the way home and arrived home at 4:15PM. 4:20PM, our world turned upside down, again. Tyler started seizing and had that same look upon his face as he did in the morning. I begged Tony to call 911 but he said no as it had only been 1 minute. I kept begging him as I knew it was going to last longer. And it did…4 minutes before the paramedics arrived. And at this point, he was foaming at the mouth, throwing up, and having trouble breathing. The EMT’s had to give him oxygen at this point. I couldn’t believe this was happening again. I knew we shouldn’t have left. My poor baby. What was going on. So off we went to the local hospital again, where we were administered for the night.

Thursday, March 11th, our neuro suggested we get transported to Children’s Hospital in Boston where he is. So Tyler and I went for our 3rd ambulance ride in 24 hours. It took us 7 hours to be admitted but we finally were, and to a neurology floor. And here we spent the next 6 days. On Friday the team decided to hook Tyler up to an EEG for 24 hours. And like a true trooper, he hardly protested! And much to my dismay, the doctors wanted to decreases his seizure med in half in hopes to capture a major seizure. On Saturday morning, while eating breakfast, this happened. I had to hit the nurse assist button and 18 people came running to help him out of the seizure. It lasted a little over a minute but for me, it was an hour. After this the poor thing slept. He kept having little seizures so they gave him Adavan to stop them. However, the adavan made him sick..all night into the morning. He had to have an IV fluid hooked up as he couldn’t keep liquid down. At this point, I was loosing it. I thought this was the biggest mistake we had made. How could we have put him through this? How could we torture someone who’s body already was torturing him? What was wrong with my baby and how could we make him better FAST?

Sunday, March 14th, the doctors told us despite the torture we put him through, they had captured great data on the EEG. They discovered that his seizure disorder is generalized instead of focal as originally thought. And the medication he is taking, isn’t working. So the plan was to start him on a new seizure med and try and get him to eat an drink. This just wasn’t happening. And again, mothers instinct kicked in and I knew he would do better at home than in the hospital. He wanted nothing to do with the bed any longer. He wanted nothing to do with sitting. He wanted nothing to do with anything. The doctors agreed and I was again faced with the discharge papers. Part of me wanted to take him and run. The other part of me was scared to death to take him home thinking he would have another grand mal seizure. But my gut said take him and that we did. When we got home, he was so timid. He didn’t know what to do. He didn’t even want to sleep in his bed that night. My heart was aching for him. I wanted to crawl in his bed and never let go. But I wanted him to know he was home.

Every day has been torture. He continues to have little episodes and now is having shaky 18 second episodes. The doctor reassured me this is normal as he isn’t even at his full dosage of his new medication. This won’t happen until Friday. I am terrified to leave him alone. I know this is going to be our life going forward. But I just can’t bear to leave him. What if this happens at school? I want to be in the ambulance with him. I want to be there to reassure him everything is ok. I hate this change of events that is now our life. I want him to be ok and not suffer. Not be scared. I am not sure how long this feeling is going to last. I don’t know if it will ever go away. I don’t want to smother him, but I can’t bear to be away from him. This is the one thing I was hoping we would never have to experience and we have experienced head on. And I had to deal with it alone. My baby, shaking uncontrollable, looking at me, scared. And there was nothing I could do but pick up a phone.

Now that he has been home for a few days, he is definitely back to his normal self. He is playing with toys, exploring the house, playing on the swing and more. He is smiling and laughing and happy. Which melts my heart but just a bit. My heart is still broken for him and I am on edge. I just want to keep him safe. Isn’t there a bubble we can put him and all the other children in?????

Advocate. Advocate. Advocate!

Tyler had his IEP in November and it do NOT go well. Especially since we didn’t bring an advocate. He was doing really well and we thought we were in a good place with the team. We had another meeting today because we had rejected portions of his IEP. Here is an update. I actually posted this on Facebook earlier.

I know a lot of you care about our little guy so I will share the update. Brief background is we asked in November at his IEP meeting, to start lengthening his day at school to prepare him for the fall when he will be a first grader and expected to be there all day. He has been going to school for only 2.5 hours a day, 5 days a week for the last 3 years. We were denied this as we were told his needs were being met in that time.

I contacted my friend Amy, who is an advocate and asked her what to do. She enlisted her advocate friend Beth and together formed a great team! Beth drafted a wonderful letter that I turned in with his rejected IEP and addressed a lot of our questions but using language that schools do not like to see like laws, and placement rights, etc.

So we met today and low and behold Tyler has a completed updated IEP that included a plan to start lengthening his time. Granted we still are not starting it now but its a plan. There are definite pros and cons to starting him now as opposed to the fall. The summer really throws this off and everyone is concerned that would confuse him. We have 2 plans that will be stated in the IEP. We will either start him off in September staying an extra hour and then build it up another hour in October and then full day by November 1st OR just put him in all day the first day of school and just have him realize this is what is expected and deal with his behaviors as they happen. We have the luxury of deciding so that is nice.

While we are satisfied with the outcome, it still pains me that families have to go through this. Just because Beth typed this letter and was there today we had a lot of questions miraculously answered. While, in November, while Tony and I were there alone, we felt completely isolated and alone and that we had no rights. Its so disheartening to know families take the team word and don’t fight for what they are entitled too. Its not fair that we as parents of special needs children have to fight. We fight every day for these kids, emotionally and physically. We shouldn’t have to fight for a fair education when that is what they are entitled too! Its not fair that things can’t be communicated entirely to the parents when an advocate isn’t present as opposed to when one is.

My gut is telling me something that I don’t like…

As you know, Tyler was diagnosed with partial seizure disorder last February. We put him on Trileptal and that really helped. Well around Christmas he started having more episodes and I called the doctor as I was sure he just needed his med increased, as he has grown and it hadn’t been increased in 10 months. He agreed so we increased it. Well then he started having these more severe type episodes first thing in the morning during breakfast. But my little tiger would sign “more eat” as soon as it was done as he knew where he was and what he was doing before it happened.

So again, I called the doctor to see if we should increase just his nighttime dose. Again he agreed, so we did that. That didn’t change anything. This brings us to last week. So I called again and he said to increase both dosages. So I did. Nothing changed over the weekend but he also came down with a nasty cold and I know seizures increase during the on slot of illness. He went 1 day with nothing, next day with multiple, 1 day with nothing, next day with a couple. This morning he had a terrible episode in bed, went back to bed. Was eating breakfast, had another one, then had another one while playing on the floor. His teacher just emailed to let me know she had sen my note and to know that he had a very small episode at 8:30.

We have an appointment on February 11th. I have done research on this and I have this sinking feeling that what he suffers from cannot be treated with medication. While that is good because I hate to be giving him something unnecessarily, it breaks my heart to think we have to watch him go through this for the rest of his life. I do not know what it feels like to go through this. And just so you know, the longest one of these has lasted was 20 seconds. So we aren’t talking minutes, its just seconds. But when your child clenches your hands, has his eyes wide open and is looking at you, and is shaking, I know my heart and body ache. These next two weeks are going to be the longest 2 weeks of my life. I just want answers. But my gut is already telling me the answer. I guess I just need to hear it for myself……