There's a Light At the End of the Tunnel

I don't often go through the days thinking about the beginning of this journey with Wade. Every now and again, I'll see a picture or smell a scent that will jog my memory and make me stop for a minute. There are certain things that will immediately take me back to the hospital. The sanitizing soap they used in the NICU is a very powerful trigger. When I smell it, my stomach automatically flips. I still can't drive downtown around Cook Children's without my heart pumping just a little bit faster. But for the most part, I focus on the present and all the strides Wade has made. However, the past couple of weeks have caused me to relive some of those very terrifying and heartbreaking moments.

Some friends/neighbors of ours had a beautiful baby boy on January 19. Cooper was having some issues with feeding and twitching, so he was admitted to the NICU. The past three weeks have been a roller coaster of emotions for this family. There have been some answers, wrong answers, no answers, partial answers, and mainly just confusion. There have been tests that have come back positive, some negative, some borderline. Again, just confusion. Yes it's genetic. No it's not genetic. It might be genetic. Then, the worst news ever was delivered. The parents were told that if Cooper didn't get better soon, he would die. Although, if he did get better, his life would be short. As I read that text, I felt as if I had been punched in the gut. From what I understood to this point was that Cooper had hypotonia so severe that it would eventually make breathing too difficult. I told Curtis that I just couldn't even imagine...

Then, I stopped. Yes, I CAN imagine. We've been there, done that. We've walked in their shoes. Wade has cerebral palsy which fluctuates between high and low tone. Which is hyper and hypotonia. How can I even say that I can't imagine? The only reason I have is God. By the grace of God, He took the most tragic and horrific thing that has ever happened to me and turned it into the most wonderful blessing. In the process, He healed the pain, and He has helped me "forget" the sadness, loneliness, and fear. It took awhile, and I didn't even realize how much I had "forgotten" until I said, "I can't even imagine what they're going through."

I remember laying on the operating table wondering how I was going to go home without a baby. How was I going to tell everyone that I had been pregnant, but I didn't have a baby to show for it? I remember the sound of the resuscitator as they tried desperately to get Wade to breath. I remember the chaplain coming to talk to me, and I didn't want to see him because in the movies, when the chaplain comes, it's all over. I remember the hospital making an exception and letting the flight crew bring Wade in so I could at least see him before they boarded the helicopter. I remember the confusion in my OB's face when he told me he just didn't understand what had happened. I remember the staff not wanting to make eye contact with me. I remember my heart stopping whenever Curtis' phone would ring when we weren't at the hospital. I was so afraid it was going to be "that call"; the one where they told us he was gone. I remember being scared to enter the NICU because I was terrified that Wade wouldn't be in his bed. I remember praying that the MRI wouldn't show any brain damage but knowing in my heart that there was. I remember not being able to cry the moment the doctor told us the results because I did already know. I remember the neurologist telling us that Wade would never walk or talk and that he'd be in a wheelchair for the rest of his life. Then, one phone call changed it all. I remember vividly sitting on the ottoman in my living room, and Dr. Nedrelow called. He had been off for a few days. The first thing he said was, "I have one word for you. WOW! This is NOT the same baby I left a few days ago." In that moment, I knew that everything would be okay. Not what I had imagined, but there was finally a light at the end of the tunnel.

I've been praying for baby Cooper to have his "WOW" moment. Thank God there was an absolutely amazing update on Sunday. When Chris and Alison arrived at the hospital, Cooper was sitting in a bouncy seat awake. He had also woken during the middle of the night and seemed hungry. Some of his levels that had been high were coming down, and the sonogram of his diaphragm was normal!!!! At this point, it looks as if some of his "episodes" have been caused by aspiration from bottle feeds. The doctors are stumped. So, in my eyes, Cooper has had his "WOW" moment!!!! Please pray that Cooper continues to amaze everyone and fights to prove the doctors wrong. God is doing wondrous things with this small and fragile life. It just so happens that I came across this verse yesterday:

His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him." John 9:2-3



None of us know the end of this story. God has a plan. But I pray with all my heart that God allows Cooper to continue healing so that he can grow up being a testament to Him. I also pray that the painful memories of this tragic situation begin to turn into blessings for this amazing and faithful family. I pray that they are able to see the light at the end of the tunnel. Please keep this family and baby Cooper in your thoughts and prayers.

The following song came on the radio on one of our trips back from Cooks. It became our theme song for our journey into the unknown with Wade. Hopefully it will offer some peace to Chris and Alison as well.


*Disclaimer: I did get permission from Alison to talk about Cooper's struggles. I didn't want to go into too much detail because it's not my story to share. But, I wanted to write about him so that others can pray for this precious baby. And of course, the story hits a little close to home. I wake up in the middle of the night thinking about Cooper so I thought this might serve as an outlet for my "forgotten" emotions as well.

Joy

This morning, as usual, I was in a rush to get Wade to therapy. I then had to rush to make a doctor's appointment for myself. I'm ALWAYS rushing, but never feel like I'm ever getting anywhere. The only thing I'm gaining is more stress. In the doctor's office, they had placed out a flyer about joy. I thought it was perfect considering the rush of my morning. I thought I'd share as a reminder to everyone that we need to slow down and enjoy life more.

Eight Ways to Restore Your Joy

~ Stop! Be still! Relax! Pray! Meditate!
~ Count your blessings. Start now!
~ Dance as if you were a star; particularly if you have no rhythm.
~ Give the gift of a smile. After all, it's free.
~ Give yourself a simple reward for each small victory.
~ Sing your favorite song loudly; even if you're off key.
~ Laugh 'til your belly hurts; especially if it's not funny.
~ Wrestle negative thoughts to the ground with positive ones.

Take the time to discover your joy for life!

A Mini Mission

Navigating the "rules" in the world of disabilities is sometimes hard to figure out. A lot of times, you don't know what those rules are until you break them. For instance, at the beginning of the school year when I was dropping Wade off at school, I pulled all the way up in the parking space. Little did I know, I was blocking a little cross walk area that leads you to the ramp on the sidewalk. I quickly figured this out when someone else made the same mistake and blocked our entrance to the ramp. So now, I don't pull all the way up. And for the record, neither does that particular car because I ever so nicely pointed it out to them! It's amazing how many things are now thrown in your face that you never thought you'd give a second thought. You tend to see the world and your environment with a new set of eyes. You constantly scan sidewalks for a ramp to make sure you know the best place to cross the street with a wheelchair . You take note of different places you go so you'll know if you can return later with a wheelchair. You get a little nervous when traveling through the airport hoping to rely on the kindness of strangers to help you get through that circular automatic door. You remember which playgrounds are the most accessible for your child and their wheelchair. And the biggest for me? You learn which handicapped parking spaces you can and can't use!

This issue has become one of my biggest pet peeves. We have a Sienna minivan with a side entry, automatic ramp. Typically, wherever I go, there are handicapped spaces always available. Yes, they're available, but they're NOT available for US! In order for me to lower the ramp AND wheel Wade off the ramp, I have to park in a space that is "VAN ACCESSIBLE".

Of course, we can park in a typical handicapped space and even lower the ramp, but then Wade is stuck on the ramp because there's not enough space to drive the wheelchair around the end of the ramp. And there's no way I can lift a 300+ pound power wheelchair over the edge! The space next to a "VAN ACCESSIBLE" space is extra wide. There is a reason these spaces exist. They are NOT for compact cars!!! I understand that sometimes nothing else is available, and the only spot left just might be one for a van. So, you gotta do what you gotta do. However, when you whip your little car into the very first handicapped space you come to--when there are at least five more down the row--and I am forced to park in a regular spot praying that when I leave there isn't another car parked next to me blocking my ability to get the wheelchair up the ramp, I get a little upset. I totally understand that this is a "rule" that a lot of people don't get. Since they've never been faced with the issue, they don't know. If they're able to walk on their own, they've probably never even given that extra space a second thought. But, if you read this and you have a handicapped parking permit, now you know! Please don't take our van spaces if you can help it!!!! Life with a little body in a big wheelchair is already challenging. Please don't make something like going to church a huge process for us.

This is my new "mini mission". If someone happens to be parking in a "VAN ACCESSIBLE" space while I'm parking, I will nicely explain to them the little conundrum I face at least once a week. If you don't know the unspoken rules, that's fine. But once you do, I hope you follow them in the future.

The Power of a Head Nod

For a very long time now, Wade has been very confident in his ability to communicate "no". Isn't every toddler?!?! He gets this little look on his face and adamantly shakes his head "no". It's very cute, and he definitely gets his point across. Sometimes the head shaking is also in conjunction with a high pitched squeal which definitely has the ability of getting under your skin very quickly! The problem? He answered "no" for everything! Even when asked if he wanted something I definitely knew he wanted, he still replied with shaking his head "no". That would then inevitably lead to frustration because he really did want the item he was shaking his head "no" to!

My theory--and as a parent to a child with special needs, I have a lot--is that his neck wasn't strong enough to nod "yes". He hadn't yet perfected a way to nod "yes" in a way that it didn't take so much effort and muscle strength. To nod "yes", you have to move your head up and down a few times to get your point across. Moving down was the easy part. The difficult part was getting his head back up as quick as it went down. Wade's a pretty smart cookie, so I knew that he really understood the difference between "yes" and "no". In fact, I'd be willing to bet that if I really took the time to study the way he shook his head "no", there was probably a slight difference in the way he shook it depending on whether he meant yes or no. Unfortunately, in the moment, it's pretty hard to take the time to study the head shake as you're also trying to prevent a tantrum because of frustration.

But thank goodness we no longer have to figure it out or study the situation. While we were in VA for the holidays, Wade discovered a way to say "yes" with a very slight head nod up and down. A lot of times, he also raises his eyebrows just a bit to really get his point across. Then the best part is he'll grin because he's so impressed with himself when we understand what he wants! It's amazing how much easier our lives have become in the past two weeks, all because of a simple head nod! It's these tiny, little things in life that we typically take for granted that mean the world to us. I never dreamed that having a three year old nod "yes" would be one of the biggest highlights of my life. Funny thing is, these little strides make me sit back and really appreciate the gift we've been given. Would I *choose* for my child to have cerebral palsy? Absolutely not! If God came to me today and told me he could change it all and take away every single symptom related to cerebral palsy, would I agree? Absolutely not! Cerebral palsy does not define Wade, but it has certainly made him the person he is today. Cerebral palsy has made ME the person I am today, and I look forward to the many blessings that will come from parenting one of the most amazing kids in the world!



On a side note, the iPad has been and continues to be, our go to device for understanding Wade. However, the iPad isn't always at arms reach. Sometimes you just need a quick answer without having to go through a computer.

Out With the Old, In With the New

It's one week into 2011, and I'm already behind! My excuse? I'm still on vacation! Wade and I arrived in VA Christmas night, right before the 12 inches of snow. Thank goodness we were able to avoid all the chaos at the airport that the snowstorms produced. I decided an extended stay was in order to recharge and start fresh. So even though it meant Wade missed a week of school and an extra week of therapy, we spent two relaxing weeks seeing family and friends and chilling out on the couch! It was so worth it, and I'm definitely not looking forward to landing at DFW tomorrow night and facing reality! As a result of our extra week of vacation, I made an executive decision that my resolutions for the new year don't take effect until Sunday, January 9. One more day to figure them all out. Procrastination at its finest!

As I reflect on 2010, I realize that this past year probably yielded the biggest changes in our family since Curtis and I got married in July 2005. It was definitely an emotional year to say the least. But in hindsight, I realize how truly blessed we are. Thankfully, the negative, scary, dark and isolating days are overshadowed by all the joys and successes each of us had last year. I'm tremendously glad I have the ability to "forget" the bad stuff, only able to remember it if I really think about it. From Wade becoming mobile in his new power wheelchair, to Curtis loosing nearly 40 pounds, all while I became a stay at home mom are just a few of the amazing things that took place in our lives over the last 12 months.

In my next couple of posts, I'll go into a little more depth and share the highlights from 2010. I'll also be compiling a post listing off my goals for 2011. Hopefully by resolving to everyone in blog land what I hope to accomplish, it will help hold me accountable. Who wants to admit to everyone that they were only able to accomplish 1 out of 10 goals??? Not me! So join me in a few days to get a little glimpse of our achievements--especially Wade's!!!--and a preview of what we'll be up to in the coming months.

Christmas is in the Air

The Christmas season is officially here! To get things kicked off, a friend and I decided to do some midnight shopping on Black Friday. Not too bad! I don't mind going if I'm already up, but I don't like getting up early to do anything, and that includes shopping. So, thanks to Old Navy, we headed out. We only stood in line for about 10 minutes to get into the store, BUT we stood in line for an hour to check out! It was worth it though. Got a few pair of PJ bottoms for 5 bucks, along with some tees. Also got some jeans for $15. Curtis and I have both lost some weight (he's lost 27lbs so far!!!!) so we cleaned out the closet the other day. We got rid of TONS of stuff. Now it's time to fill it back up! After that, we headed to The Children's Place, Target, and Kohl's. We got back home around 5:30. All the shopping definitely got me in the spirit.

Last night, we bundled up and headed downtown for the Parade of Lights with some friends. It's the first parade that Wade has been to, and he was in awe. He loved the music and all of the lights.

 

 

 

 

 

Now, I need to get the house cleaned up so we can decorate. Hopefully we can get it all set up tomorrow after church before Curtis goes to work. I love the holidays!

Loss For Words

While I'm at a loss for words at what happened tonight, it seems as if Wade has found his!!!

Wade got sick in the middle of the night last night, so needless to say, he was pretty drained today. (Not to mention we were out and about shopping, eating, etc. for 12 hours yesterday without a nap!) This afternoon, he took a long nap into the evening, so after bath, instead of going right to bed, I wanted to test something on the iPad. I wanted to see if he could spell simple names--mom, dad, Wade--since he knows his alphabet and letter sounds. Typically, he's up for anything on the iPad, but I couldn't coax him to use the proloquo app (communication app). So, we went to his new favorite app, Starfall. On the letter "G", when you press the button, it says "Green means go." I repeated it after the device, and Wade looked at me and selected the sentence again with his head. So, of course it repeated the sentence, and once again, I read the sentence. Then Wade did it, and I did it. Over and over until he got a little chuckle. I could almost see the light bulb go off like he was thinking, "I can say the same thing Mom says!" It was pretty cute.

Since he had his moment of fun, I tried to go back to proloquo. I went to the keyboard and got him to spell W-a. I asked him what letter was next, and I saw him look over at the letter "d" but then he tried to select "b". (a, b, c, d were the four bottom choices on proloquo app keyboard) I tried to redirect him, but he kept going back to "b". I then realized he was shooting for the bottom part of the square which was right above the "home" button. (Most of the time Wade is pretty accurate with his head, but I moved from 6 choices to 8 tonight which made the squares smaller, plus he wasn't feeling well.) I said, "Oh, you want something else?" He looked up at me and again tried to get the home button. I ended up touching it for him, but he took it from there. He then selected the button that says "quick sets" (the area that I've programmed some stuff for him); then selected the button that says "bedtime"; then selected the button that says "bed". (Mind you, there are other choices on the screen that he has to navigate through/choose from.) I was shocked!!!! Up until now, I've gotten us to a particular page of choices we've needed, then he makes a selection. So, he's been paying very close attention to how I get in and out of different areas and where I'm placing certain choices! I said, "You want to go to bed?" He just looked up at me with the most pitiful face. So, off to bed we went without a single cry of resistance. My sweet, tired, sick little boy just navigated the proloquo communication app on his own, switching between multiple screens. What an awesome accomplishment!

***I just realized when I posted this that it is 1:00AM. Just so I can keep things straight, this event happened Sunday evening:-)