My own Musical

The Lion King is currently showing at the Kennedy Center. Carter and I joined some family to watch the show yesterday. The Lion King was magnificent, the best show I have ever seen. It was magical; there are few things better than musical theater. It is entertaining to watch the story unfold with songs.

I have to tell you that secretly in my mind I am starring in my own Broadway musical. I do not want to be in an actual musical, I just have one playing in my mind. For the most part, I do not start singing in the moment; almost like the songs are the background for my everyday life. Songs are playing in my mind for the majority of the day. Just about any word can set the stage for a song to start playing (i.e. driving the kids around in the car – On the Road Again, giving my kids a bath – Splish, Splash, cleaning the house – It’s a Hard knock Life).

A friend asked recently if I felt like Brayden’s circumstances have changed my relationship with the Lord. I immediately answered, absolutely. I cannot do this by myself. I have spent moments where I actually cry out loud to Him for help. I do this in the car, alone or just with Brayden. Hopefully the people next to me at the stop light think I am on my phone because sometimes I am actually yelling.

How do I hear from him? I do not get those soft whispers like in the Karen Kingsbury novels (thank you to my mother-in-law for that addiction). I think He places songs on my heart, There’s within My Heart a Melody. I am so thankful that I learned so many hymns growing up. In times that I feel overwhelmed and lost in the chaos, my favorite song His Eye is On the Sparrow is playing in my mind or Trust and Obey. I have days when I feel like I cannot move any faster, Be Still and Know that I am God starts up. The most popular one for me these day is an early 90s Twila Paris song God is in Control. Each song is comforting and wonderful reminders to focus on Him.

Having Brayden in our lives has definitely changed things. It has changed the play list in my mind and brought words of the Lord closer to my heart.
What is your music?

Delightfully Oblivious

I love to watch my children sleep. Their sweet little faces, not a care in the world. It takes all my strength not to hug and kiss them in that moment. I would not really try that for fear that they would wake and not go back to sleep so I sneak a little kiss and adjust their covers. They are completely oblivious to the troubles of life. Of course, they have their worries; will I have to take a nap, will I have dessert tonight, did I get the same number of crackers that my brother had…

I am pretty sure that Brayden is oblivious to his struggles. He is such a content child (if he was not then I would be even more of a mental case). Brayden tags along to anywhere I go, seeming to enjoy his KidKart. He usually fusses being put in the car but quickly gets settled and is along for the ride. Not seeing, walking or talking, things that he does not know are even missing. He is delightfully oblivious.

I must say that I am oblivious about some things related to Brayden; things that I am content being oblivious to. I mentioned before that I have been reading the book Aidan’s Way. The father who describes his life with a son that is similar to Brayden. Several points in the book I was just shocked. The father describes conversations that he had with doctors; I have heard many of the same comments but one doctor’s comment was very unsettling for me. Their family was meeting with another neurologist. This new doctor seemed knowledgeable but no compassion. He actually suggested to the family that institutionalization might be a good option. What?! People still do that?! This incident seemed to take place about 15 years ago, in the 1990s not the 1940s. Their child was still a baby. I realize that for some people institutionalization might need to be done but saying that to a parent holding their little child is just lacking in compassion. Later in the book, the father is discussing his son’s condition with a colleague. This colleague said that is might be better if the boy died. That’s right, the man said it. Can you imagine the insensitivity?

After reading comments like those, I am happy that I am oblivious to what some people may be thinking. Sure, sometimes we get the occasional stare but I think because they are jealous they do not have such a cool set of wheels (a.k.a. KidKart). We may get the occasional “poor things…” and the popular comment is about Brayden looking sleepy as I carry his toddler body with two hands and he is just hanging there. Aidan's Way mentioned a similar incident:
People would approach us, attracted by our beautiful baby boy… “Oh, he’s so cute. Is he sleepy?” How could we answer? If we said, “No, he’s snowed by powerful anticonvulsant drugs,” What would that do to the moment?… Instead we would lie, conceal the difficult truth, keep up appearances: “Yes, he’s sleepy.” I tend to say, "He might be sleepy. It is nice to be little and sleep whenever you feel like it."

People looking or asking questions are completely oblivious to what is going on with our child. I am happy being delightfully oblivious to what they might actually be thinking. Brayden is delightfully oblivious, just content having us love him.

And yes, I did take those pictures while they were sleeping. I just could not resist. They had no idea until I showed them this morning.

The White House Mess

Today was a special day. My father invited us to dine at the White House dining room. The dining room is located in the West Wing of the White House and run by the Department of the Navy. The dining room is actually called the White House Mess. We not only dined in the White House Mess but we had a mess of our own in the Mess.

My parents, sister, brother, Jeremy, Brayden and myself headed in to the West Wing and down to the White House Mess for a lunch this afternoon. We walked in to the small room with a beautifully decorated table and just a few other tables; we were in the executive room. Check out the family blog for some pictures. I have been waiting over a year to join my parents for a lunch at the White House. Shortly after sitting down, Brayden vomited. And I mean vomited, projectile vomit, bigger than I have ever seen. Then he did it again and again. He was completely covered. It was dripping down the KidKart, the dining chairs, Jeremy suit…It was a mess. The staff tried to help us but we needed more than a few napkins. Echoing in the back of my mind was the doctors telling us that if Brayden vomits several times, we need to get him to the ER. Inside I hit my panic button. Brayden seemed to stop vomiting and we started to clean up the mess. Jeremy and I immediately thought we needed to get out of there and fast. I wanted to break down. I have been waiting to come here and this is what happens! Really?! My dad sent his secret service to get our diaper bag out of our car back at the EPA building. Brayden’s clothes were soaking with regurgitated formula. We managed to get most of his clothes off and set him in the KidKart. Wouldn’t you believe it, he was happy and smiling! You have to been kidding me; I was ready to burst into tears and he was smiling like the past few minutes did not happen. I felt like the room reeked of vomit and we caused a big scene (even though no one was in the dining room yet). We decided to stay and the rest of the lunch went smoothly. Although we left a large spot on the floor of the room. We made a mess in the Mess.

After the lunch we headed to the bathroom to clean Brayden up some more. We took a picture while in the bathroom of the West Wing to remember that moment. Who cleans up their baby vomit in the West Wing?! A quick clean up and then we headed upstairs to the Roosevelt room to wait for my brother’s photo op with the President, which I am pretty sure Jeremy, Brayden and myself smelled of baby vomit. My brother worked for the White House correspondence office (my brother, Matthew Johnson, was mentioned in a 60 minutes piece) and recently changed jobs. Upon departure the White House sets up a time to take a picture with the President as a thank you for your service. It is a departure photo for people that worked in the White House. My brother invited all of us and of course we got preferential treatment because of my father. We waited in the Roosevelt room, directly across from the Oval Office. Once the President was ready, we entered the Oval office. The President greeted us with a warm handshake and a smile, my mom got a hug. We took a few pictures (we are not allowed to take pictures so we have to wait for the official White House photos) and started to head out. The President knows a little bit about Brayden; my parents have talked with the President before and told him a little, basically that he has some special needs. President Bush asked “So what does he have?” He had no idea that was a very loaded question for us. Jeremy and I responded with, “He has several brain abnormalities, cerebral palsy and additional things.” The President smiled and said that we must give him a lot of love and everything involved requires a lot patience. He also added, loudly, speaking to my dad and the President’s staff that my dad was doing a great job and he really meant it. Oh the day in the life of Brayden Jenkins; another thing to add to the list of only things for Brayden. A mess in the White House Mess and meeting the President.

Gut Check

Do not worry I am not talking about my actual gut or Brayden’s, although I considered taking a picture. I am talking about mother’s intuition, knowing something in you gut. When I had Carter and Luke, I quickly found out that mommy knows best. I could tell when they just had a cold or it was turning into something bigger. I felt confident going to the doctor and letting them know that my child was sick. I just knew it in my gut. Dropping them off at preschool for the first time, I just knew that they were going to be just fine; in fact better than fine, they were going to love it. When Luke was born, he did not gain weight for the first few weeks, the doctors labeled him “failure to thrive”. I knew in my gut that he was just fine. Luke was sent to a couple of specialists, one was a cardiologist. Luke had/has a couple of very small heart problems. I knew in my gut everything was going to work out just fine for him and it did. He gained weight, the heart problems took care of themselves and he definitely is our thriving boy now.

My gut does not seem to do so well with Brayden. I was talking with a friend yesterday, who has a daughter with similar conditions to Brayden’s (do not worry I will be talking about them in a future blog). She asked how Brayden was doing. I explained that when Brayden was sick it just seemed to be a little virus. Of course the seizures complicate things, but for the most part he was sick just like any other child. I was saying that my gut is just so off because I do not know what to do when he is sick or who to even call. I cannot tell if it may be a little cold or turning into something bigger. I am constantly second guessing myself. My friend was saying that she felt the same way sometimes but figured out why. She found that so many doctors (and they see more than we do) ask question after question, looking for explanations or answers. They ask typical questions, deep questions, absurd questions but all the meanwhile leaving us with more questions about our own child. We are constantly face to face with doctors asking us more and more questions. Sometimes making us feel as though we do not know what we are doing or that we may not know our child as much as we think we do. Of course that is not the case because the doctors are looking to us to assist in answering many of those questions.

That makes sense to me but I feel like my gut has been off from the beginning. Those first few days after Brayden was born, he was taken away for some tests. I just knew deep down that he was just fine and that the tests really were going to show that he was healthy and it was just precautionary. Boy was I wrong. The following months of test and doctors, I felt hopelessly optimistic walking in to the building, thinking that things for Brayden were going to get better but instead walk out with another thing to add to his list of problems. My gut was way off!

Sitting here thinking about it now, I am wondering if the “everything is going to be just fine” feeling in my gut was the whisper of the Lord letting me know that everything will be just fine, not in the perfect, healthy baby way but in the way that Brayden, our family, will be just fine and we can handle this.

As for my gut, I am learning to trust it. Jeremy and I really do know Brayden and what works. We are constantly learning his likes, dislikes, understanding his cries and of course when he is hungry…we have to fill his gut.

Brotherly Love

Today Carter and Luke were making up their own game. They had pictures of animals spread out all over the floor. One would describe the animal’s characteristics then the other would guess which animal. If they guessed correctly, they got to keep the picture. I was walking around doing some house work when I noticed Carter ask Brayden if he wanted to play too. Carter and Luke then pulled Brayden, who was sitting in his chair, over to their game.

I stepped back to watch. They each had a turn. When it was Brayden’s turn they would say something like “It is little with lots of feathers.” Pause for a moment. Then, “That’s right Brayden, it is a rooster!” Then they would move on to whom ever was next. They went around and around. Each taking turns and filling in for Brayden’s lack of words. By the end, each of them had a pile of animals.

Later this afternoon they decided, Brayden also, to watch a movie they checked out at the library. Carter pulled him over and they all sat together watching a movie.

I loved watching them include him. They love him completely and unconditionally. They do not see all of his abnormalities and struggles. While they are aware that something is different about Brayden, it is not a big deal to them. When Brayden is upset, Luke sits beside him and sings Brayden’s favorite songs (according to Luke), Twinkle Twinkle Little Star and Jesus Loves Me. Carter always talks to him as if he was talking back; he has also learned to recognize some of Brayden’s seizures and comforts him when they happen. The boys do not question why Brayden is not doing much or why mommy and daddy have to spend so much time caring for him. They love him and his is their brother, that is all there is to it.

I pray that it will continue this way; that they will love him, protect him and learn from him. Brayden’s life will help shape their lives as much as it is shaping mine.

Finding the Treasure

Sitting on the beach, watching people go by. Several people have been looking down at the sand. At first glance, I thought they were looking for sea shells. There have been several spots where people stop and spend some time looking. Out of curiosity, I had to go check it out too. I looked down for some amazing shells. That is not what I had found. I came upon large piles of bits and pieces of shells, rocks and seaweed. The next couple of days I watched more people stop and look at these piles. It seemed as though they were looking for something special. I saw someone find their treasure; they scooped it up and put it into a little bucket. What are they looking for? What is in that pile of broken pieces? Finally, someone told us that along the beach, people have been finding shark teeth. Little and big shark teeth. People at Topsail Island do not look for sea shells, they look for shark teeth. Once we were aware of this treasure, we had to look. Carter found a little tooth. Luke is still looking.

We are constantly looking for Brayden's treasures. Carter and Luke's have been more obvious; their singing, imagination, sweet little voices or projects they have made. Brayden's little treasures have been when he first started stroking his hand on top of ours, kicking his feet, the once in a while smile, etc. I am sure that Carter and Luke did these things but at the time we did not find them as such treasures. We were looking for those big treasures like the crawling, walking and talking. Brayden has changed the way we look at things. We are looking into a pile of broken pieces not finding big things but the little treasures. Treasures that we hold onto dearly.

Heaven's Very Special Child

A meeting was held quite far from earth
It's time again for another birth
Said the angel to the Lord above
This special child will need much love
His progress may be very slow
Accomplishments he may not show
And he'll require extra care from the folks he meets down there
He may not run or laugh or play
His thoughts may seem quite far away
In many ways he won't adapt
And he'll be known as handicapped
So let's be careful where he's sent
We want his life to be content
Please Lord, find the parents who
Will do a special job for you
They'll not realize right away
The leading role they're asked to play
But with this child sent from above
Comes stronger faith and richer love
And soon they'll know the privileges given
In caring for their gift from heaven
Their precious charge, so meek and mild
Is "HEAVEN'S VERY SPECIAL CHILD"

by Edna Massionilla December 1981

Normal Day at the Beach

Being at the beach is a relaxing experience for Brayden. He has been loving the sand on his feet. Jeremy has been working hard to keep Brayden involved in the family beach vacation, trying everything to make sure he is included and we are feeling like this is a normal vacation. We have set up a cabana for Brayden to sit, sheltered from the sun. We brought Brayden's little chair for him to sit in. The boys fill buckets and trucks with sand so that Brayden can sit in his chair and still be able to put his feet in the sand. While in the house we brought his music and fan so that he would hear the normal sounds of home and feel safe. Since he cannot see, we try find things that will involve his other senses to help him be aware of his surroundings.

Last summer we vacationed at the same beach. We were desperately trying to understand Brayden and his circumstances. We felt like everything had been turned upside down. Our normal life with three normal children, was not so normal anymore. A year later and we are still looking for normal.

A friend sent me a book to borrow, I have been reading on this vacation. The book is a father's memoir detailing his life with a son that has several brain abnormalities. I will have to talk more about this book in blogs to come. The situations are remarkably similar; from doctors, tests, therapies, emotions, questions, etc. Many of which we are experiencing. Almost every page has something that resonates with me.

Thinking about our quest to have a great normal vacation, his wording really hit it home for me and I wanted to share it. A few days before leaving for vacation, Brayden was not feeling well. I mentioned that I wanted things to start feeling normal. Do we ever find a sense of normalcy or at least a normal routine? Brayden is far from normal and likes to shake things up. Normal needs to be taken out of my vocabulary.

If you changed the name, it would perfectly fit our Brayden's situation.

Aidan's life was all about him and us letting go of expectations and desires. We had to let go, continually, of whatever image of him we held in our minds. As the typical became the impossible, we had to redefine his normal, our normal. It was now normal for us to run food into his small intestine (Brayden's is into his stomach) by either a portable pump or a large syringe. Seizures were normal; they still happened many times every day to various forms. We knew how to distinguish the onset of a major neurological explosion from the run-of-the mill seizure; it was routine for us. Not walking, not talking, not seeing-all of this was out unexceptional everyday experience. Of course, at times it could be deeply unsettling. Sorrow could easily arise if we dwelt too long on what a normal life might have been for him. With no real choice, however, we had to take normal for what it actually was. We had to let go of the ideal child.

Aidan's Way by Sam Crane

Protecting the Turtle

We have arrived at Topsail Island for our family vacation. Just Jeremy, myself and the boys came to relax. Topsail Island is very low key little beach area. It's pride and joy are their turtles. Topsail is a nesting ground for the Atlantic Loggerhead Sea Turtle. Everyone is aware or made aware of the sea turtles. Each time you check in you are handed keys, paper work, lists of area restaurants, house rules and turtle rules. The people of the island do not want the turtles disturbed and have a list of things to do and not to do so that the turtles and their nesting areas are protected. They want those little ones to make it! The turtles need a clear path to their nests and beach. They can distracted by lights at night, mistaking it for the moon. The holes in the beach could be a potential trap for these creatures. The people work hard to make it easy for them and give the turtles the best chance possible.

As many of you know, we refer to Brayden as our little turtle. He is slow moving and keeps a lot hidden inside his shell. The turtle is a good representation that we need to slow down for him, focus on where he needs to go without all the possible distractions that may cause us to loose our way. We too are protective of our little turtle. We always try to make him as comfortable as possible. Watching to make sure he is taken care of since he is so small and cannot do much for himself. We want to everything we can to provide him with the best chance possible.

Brayden is using the beach as his nesting ground this week. Just one day in and he has found the beach to be a very relaxing place, understanding why turtles like it so much. Only a few minutes after settling in down on the sand, he was sound asleep.

We have lots of clothing with turtles. It seems to be very popular during the spring and summer. He wears his turtle clothing so well. It is a great reminder to us that he is slow moving and to be protected. He shirt today says "Life in the slow lane." Definitely his motto.

We love our turtle!

I have feet?

Brayden is sporting his first pair of sandals. For the most part, he has been wearing those wonderful little Robeez shoes, which are so soft and flexible. Brayden is not really aware that he has a body. He is not quite sure what to do with his hands and not sure that he even really has feet. We just found out that he has sensitive little piggys. We strolled into Stride Rite to have his feet measured. He did not like that. We found his size and proceeded to try on some shoes. He did not like that. He curled his toes and made it difficult to shove on any pair of shoes; once the shoes were on, he pounded his feet against the foot rest of his Kidkart. He liked the sound of that. Maybe he has found his feet after all!?

Selfish

There are days when I just want to be selfish. I know how selfish that sounds but I am having one of those moments.

Brayden is slowing starting is feel better but not able to keep any real food down. He tube feedings have been Pedialyte. Yesterday he was still vomiting after nursing or having formula. Thankfully, yesterday brought only a few small seizures. Brayden being sick did not come at a good time for me. In a couple of days, we are leaving for the beach. We are nervous about going with him still being sick (hopefully he will be better before we leave). In case, he is not able to keep any nutrition down, we must go to the hospital. A hospital trip is not too bad around here; we have several options of places that can handle a special needs child. At the beach, the hospital choices are what you see is what you get. Selfishly, I am thinking that Brayden better get better quickly. I do not want this vacation messed up. I am not been on vacation in about a year. I have not left the house for more than a few hours in about a year.

Tonight is one of my favorite events. Every year the White House hosts a congressional picnic on the White House lawn. Members of Congress and the Presidential cabinet members are invited. We tag along with my parents (my dad is the EPA Administrator). It is an amazing time, something out of an old Hollywood movie. The lawn is breath taking. There are interesting people all around (including the President and First Lady), delicious food and fun for the family. It is my absolutely favorite thing I have ever been to with my parents. This is the last year that we will be able to go since the President’s term is done. I desperately want to go but Brayden is still not feeling well. We also have no power because of a large storm that passed through yesterday afternoon (check the family blog about the storm). If it was socially acceptable, I would kick my feet and have a temper tantrum about going. I feel selfish.

On top of all of that, today is our 9th wedding anniversary. Selfishly, I want someone to come to the house take care of my children so Jeremy and I can disappear into DC for a few hours. I realize that this is not going to happen so inside I am pouting like a little child.

I know being selfish is not a very attractive trait but I am having one of those moments. When my boys wake up, I know that today will be about being selfless and taking care of them (which I love).

Like it never happened

It always amazes me that children can be really sick one minute and fine the next, like it never happened. When I get sick, it is a day of sick and a day to recover from being sick. Brayden is doing much better. After 48 hours of lots of vomiting and seizures, he is smiling and back to himself, like the past couple of days never happened. On the other hand, I feel spent. That seems to be the story around here lately. From the very beginning with Brayden; all the tests, doctor and hospital visits, he is always fine and I am wiped out, Jeremy too. God gave those little ones the ability to bounce back quickly!
I have moments where it seems like things never happened, sometimes going into the doctor. Five minutes before we are there Brayden is miserable. We go in; he has no fever, smiling and acting great. I sit there and think that maybe it never happened and I am being that hyper mom. There are times he has seizures and they come and go so quickly. I think maybe it never happened? That is why I started video taping the seizures in the beginning; to assure myself and the neurologist that they were really happening.
Sometimes I wake up in the middle of the night not really thinking clearly. My mind trying to make sense of where I am and what is going on. Over the past year, I would think maybe all of this with Brayden never happened. Maybe it is not bad as it seems. He is a healthy, normal baby lying in his crib. This cannot actually be happening. Then I wake up and realize that this is my life; wife to Jeremy, mother to Carter, Luke and Brayden, loving every minute of it, resting in the knowledge that God knows what is really happening.

Brayden is doing better. After a few tests it was found that he just has a virus and we need to wait it out. As of tonight, he is doing just fine. We are giving him Pedialyte through his G-tube and adding back his formula over the next several feedings. He has been able to keep everything down. We are waiting to hear from the neurologist about the seizures. It typically is just an increase in his medications. Right now he is sound asleep like today never happened!

Kiss it and make it better

Brayden has not been himself for the past few days. His seizures have been back, we think mostly because of his rapid growth from good nutrition since getting his G-tube. The seizures have been under control for about three months, until the past couple of weeks. Some days the seizures seem to really knock him out and other days, it is like they never happened. Friday, Brayden slept through his occupational therapy. Which is a pretty impressive task since the OT is stretching him, rolling him and moving him around. Today he slept through his vision therapy. There is nothing to be done when sleeping during vision therapy. On Friday, he vomited a large amount shortly after a G-tube feeding. Then over the past few days he has vomited three times. I walked into his room today to check on him. I smelled something. I walked up to his crib and he was laying there in a large puddle of vomit. He wasn’t crying just laying there wondering what was happening. He looked so helpless and lost, not knowing what to do. I felt the same way. I have put in phone calls to a few doctors to check about the vomit, G-tube and seizures. Fo now, the doctor said to put Pedialyte in the tube feedings to help keep him hydrated. The neurologist will call in the next couple of days and probably up his seizure medications.

When my other two boys are sick we know what to do. Sometimes it is just some good ol’ TLC that they need to get through the yuckies. They can tell us where it hurts and what they need to make it better. Even when they were babies, we felt like we could take hints from them to find the best way to help. With Brayden, I am never quite sure what we need to do for him or what doctor to even call. We have not figured out his cues for being uncomfortable or sick, other than the obvious vomit. I have not figured out when and if we need to hit the panic button or just wait it out; I sort of find an in between by calling the doctors before scooping him up and taking him in. It is so hard to watch him and not be able to help him. The seizures have been very unpleasant looking today and happening many times in a day. His body twists and shakes, his breathing and heart rate are rapid and he just disappears for a moment. We are supposed to count to see how long the seizures last. For the most part they are about 30 seconds. Thirty second does not seem like much until you are watching your child in discomfort. Then 30 seconds seems like forever. There is nothing I can do but talk to him and love him when the seizures are done.
All I want to do is kiss it and make it all better.