Picture not a Story

Last night I saw a movie. It was about several people’s lives, their mishaps, struggles and joys. A small moment in the movie was a family in the hospital right after the birth of their baby. Everyone with big smiles, lots of love and an open future for them and their children. I felt tears well up inside of me but I did not let them out. As I lay in bed that night, I was thinking about why, out of all of the things going on in the movie, that brief scene was still playing in my mind. Then the moment of Brayden’s birth came back to me. I thought immediately of a picture that I have hanging in the kitchen. It was of my family welcoming Brayden. We were filled with smiles, love and many dreams about the future; a couple of days before we knew that Brayden was not the healthy newborn he appeared to be. Some days I want that moment back, right after Brayden was born, the joy that filled us. That is probably why I have not taken this picture down. I look at it often. We were completely unaware of what was to come. My heart is beating faster even thinking about the feelings and emotions that followed the next weeks and months; how much that joy was covered with concern, hurt and not understanding. Where is my movie moment with the family gathering around, the happy music playing and fade off knowing that everyone lived happily ever after?

Our joy is coming in different ways and unexpected places. On a day to day basis, we are filled with joy about Brayden. We definitely have our moments of concern or hurt but that is becoming less and less.

As the movie was over last night, I was thinking, as much as I do not like predictable outcomes in the movies, I really do want a happy ending with things neatly wrapped up with a bow on top. I like the “everything worked out” feeling. Our lives are not like the movies, we do not know what the narrator sees and what everyone else is doing. We do not have flashbacks and flash forwards to help us understand the story. We do not have the perfect question or comment for those difficult moments. For now, all we have is the picture of this moment and the story is still being written. Our writer, producer, director, narrator is the Lord and he knows the true happy ending.

Going, Go, Get

I am an organized person and I like a bit of a schedule. A day with Brayden’s appointments (which is most weekdays) is very strategic. I plan out when I will shower so I can nurse Brayden at the appropriate time so that his next feedings will or will not interfere with his appointment. I try to give him all the medicines at about the same time every morning. I get the older boys feed, dressed and ready so I when I say go, they are ready to go. I strategically pack bags for Carter and Luke; toys, books, coloring books that I have stored away, from birthdays and Christmas, so that when they are going places they have something new to play with and I don’t have to keep buying new things. I have bags packed for Carter and Luke, as well as a change of clothes. I have several bags for Brayden: an emergency bag with special seizure medication and an extra G-tube in case his is pulled out. He has his feeding bag with the pump, formula, tubes, etc. His also has his normal diaper bag. I load the car with all of their things and then load them in. We live in Waterford, which is not close to any of Brayden's appointments. Once I hop in the car, we are off to drop Carter and Luke at someone’s house (usually in the opposite direction of where we are going for an appointment). I plan enough time to get them in and settled. Then Brayden and I head in for an appointment. I try to plan enough time to park, get him in his buggy and get into the office. His appointments are never on the first floor. Now this wouldn't feel so overwhelming if it was only happening every once in a while but it is all of this, 2-3 times a week.

I feel like I spend a couple of hours going just to get going. Just an hour appointment tends to be an all day effort. I do not want to be late to the appointments because it means less quality time with doctor or less time in therapy.

Today was a typical appointment day. I dropped off Carter and Luke at their great-grandparents house. I even scheduled in enough time to stop at the store to pick up some pictures. I was heading into Leesburg for Brayden’s feeding therapy. We were doing great on time, for once I felt like I wasn’t sweating about time. That is when I looked up and saw a strong wave right at me. I was getting pulled over for speeding! I had no idea that I was speeding, I am not really sure what the speed limit is on that road. Of course I am upset about the ticket (he did not let me off) but more upset about being late. My strategically planned day and times were messed up. I am so tired of spending so much effort just to get to an appointment. I have gotten 2 speeding tickets in the past year. I have not had a speeding ticket since high school. The recent tickets, both times, I was lost in thought about Brayden. I have been driving along, no music, no Carter and Luke, just Brayden and my thoughts. Both times I have already been upset just driving along with my emotions about Brayden’s circumstances, having a down moment in the silence. Then next thing I know, I was getting pulled over.
Let’s just say tears may help me get out my emotions but not out of a ticket.

Wet Pants

My middle son, Luke, is not potty trained. He is three. We have been trying for several months. I realize that the problem with training is all about the time. We have so many things going on with Brayden that we have not made potty training a big priority for Luke. I am having the bad mom guilt. Is the potty training problem a potential sign of a bigger problem? Not having enough time for Carter and Luke. Carter is very understanding; he knows that Brayden’s needs tend to come first because he cannot take care of himself. I am not sure if Luke understands. Today, I was in the middle of changing Brayden’s feeding tube and Luke announces that he needs help to go to the bathroom. I just needed one more second to close up Brayden’s tube and I was going to be right there but I did not make it in enough time. Luke had wet pants. I wanted to scream, not at him but at myself. I forgot to even ask him after his nap to go to bathroom. I was busy with Brayden. We are still figuring out how to make time for everyone and help the boys understand Brayden’s needs without making them feel less important. I love each of them in so many different ways and never want them to be waiting for me…in wet pants.

Rolling down a path

Brayden’s KidKart was delivered today. It has been on order for several months. I am having bittersweet feelings about its arrival. While I am excited that he finally has it, I must admit that seeing him in such a contraption is a bit overwhelming. It is very tangible evidence that Brayden has special needs. It may sound a bit strange but having him in normal baby things makes things feel a bit more normal. Seeing him in his first wheelchair makes it clear that we are not heading down a normal path. At least Brayden has some hot new wheels to head down whatever path we may be led.

Understanding Gap

I was given a book shortly after Brayden was born about having a child with a disability. To be honest, I never picked it up until recently. There is a section in the book discussing the “understanding gap.” People that do not have a child with a disability have a hard time relating and understanding your situation. I have not really experienced much of this. Brayden is usually surrounded by family and friends who have been around from the beginning. If they do not understand something they ask or fake it really well! Yesterday, I experienced my first real understanding gap. I scheduled an appointment at a salon for a micro dermabrasion facial (I have never had one before). When I called to schedule, I mentioned that I would have a baby with me because he had special needs and where I go, he goes. I assured them that he would not be a distraction and does not make any noise. The salon seemed okay with it. I arrived yesterday morning and received a not so warm greeting. It all started with the owner giving me an earful about bringing him was disrespectful to the salon and others using it. People came to relax and not to hear a baby. I tried to explain that he was handicap and I need a special person to watch him (which we have not found yet). I tried to explain that even though he is one, he does not get up and move around or make any noise. He does not know how to do that. We proceeded to the treatment room. I am not clear as to how Brayden would be a distraction to other clients; we were in a private room that had air purifier going and some music. I don’t think people could hear anything if the other rooms were similar. The owner was the person doing my treatment. She huffed around trying to make the room accommodate the stroller. Once we got situated, I really wanted to grab Brayden and get out or start crying. I was so flustered; I did not know what to do so I sat up on the table. She helped me get situated. Several times during the treatment she asked if I was comfortable. I wanted to scream no! I just wanted the treatment to be over as fast as possible. I realize that she did not understand my circumstances but I was hoping that she would try. Brayden was quiet for the whole thing but of course he had a stinky diaper in the middle of the treatment. I tried to ignore it and hoped the woman did not smell it! At least my skin is smooth!

Sweet Little Hands

There are moments with my children that I wish I could hold on to forever. I cherish holding their sweet little hands. They reach up and grab a hold with so much love and trust. I just want to hold on and not let go. Brayden is slowly learning about his body. Just in the past week he realized that his hands can explore things other than his mouth. This evening he reached out his hand while sitting in my lap. He put his hand on mine and gently starting stroking it with his cubby little fingers. I sat there with tears in my eyes and goose bumps all over. It felt so wonderful; I did not want to move. I sat and watched him slowly move his fingers over my hand. Always having a camera close by just in case he has a big moment, I had to take a picture to remember. This past year I just watched him hold his little hands so tight and twitch from a seizure. He rarely has his hands relaxed and open. Seeing his hands open and exploring feels like a big milestone for him and his development. He is slowly finding hands and what they can do. I love the moments when he has discovered something new. I want to take his hand and hold on to it forever. Maybe holding hands and pat-a-cake are coming soon.

Special

Autoantonym is a word with two meanings. The word special seems to be a very positive word with pretty simple meanings. Or is it? After our visit to a doctor last week, we started talking about special. We often get the remark that Brayden is a special little guy. As his parents, we think he is above and beyond anything special and we think the same about our other two boys. We think that the little things that they do or make for us are very special. I have a special place where I store their special keepsakes. What do we do when special becomes more of a label and less of a compliment? Brayden is considered to have special needs, we have to order special equipment for him that a lot of the time is a special order, we see lots of specialists and pretty soon he will be riding a special bus to school. We have noticed when people are talking to us about Brayden and they do not know exactly what to say, they tend to say something about him being a special child. We could not agree with them more. We have found Brayden to be quite a special one with his own special needs. The word special is an autoantonym for us, depending on how it is used, sometimes it helps and sometimes it hurts.

Pass or Flunk?

Oh, the days of school and cramming for tests. Getting ready for any question the professor might throw at you. Then sitting at the desk looking over the questions; there are some I can definitely answer, others I can answer pretty well and always a couple that might be shot in the dark.

The past couple of days I have felt like I have been taking a test, trying to be ready to answer any question that is thrown my way. It all started when Brayden and I were driving into the parking lot of the building where he has feeding therapy. The parking lot is a bit difficult to find a spot. If you do not get a spot on the first tier, then you slowly start moving your way back to the next tiers. Does not sound too complicated but between each set of parking tiers are a large set of stairs, which makes it difficult to get up if you are one who needs to use wheels. So you must go all the way around the parking lot to get up to the building. Well this past week I spotted the coveted front spot, a front row handicap place! I was ready. We had the handicap tag hanging from the rear view mirror and I was ready to claim my space. As a drove up, coming in the other direction was a man and women in their car with their handicap tag. We made eye contact. Then I turned into the parking space. I thought to myself I cannot push him all the way around the parking lot today. I unloaded all the gear for Brayden, walked into the building, stepped onto the elevator, looked up and there they were…the people I had meet in the parking lot stare down. I felt like they questioned why I needed the handicap place. I had to give them an answer, whether they needed one or not. I said with a smile “I guess I was the one who took the last handicap space.” The women looked at me and sharply said “Yes.” I, of course, was ready for this test. I started to explain that I could not push Brayden up the tiers of stairs and it is hard to go all the way around the parking lot. Well, the door opened on the elevator and they got off. She did not seem satisfied with my answer. I flunked that one.

The following day, Brayden was scheduled to see at doctor at Children’s neurogenetic clinic. I was ready for this test. We had copies of all the procedures done on Brayden, the referrals, list of medications and even photos for the doctor to see. Upon arrival you must complete a medical form. I thought we did not have to do much because we come to Children’s all the time but not the case because we were in a different department. I had to fill out a form about Brayden. Oh boy, I had to write out Brayden’s conditions. I can barely say them and only sometimes remember how to spell them correctly. Will I get credit if the spelling is close? The form was completed and we went to see the doctor. She asked us more questions than most of the doctors we have seen. Now, I know most of Brayden’s medical history and can talk about it pretty well. Then the doctor asked me his height when he was born. Oh no, I could not remember. An easy answer, usually a given. I could not remember it. Please ask me something else, maybe about his seizures or different treatments he has. Well, one question wrong so I guessed. The doctor grilled us about our family’s medical history from siblings to grandparents. I need to carry a cheat sheet. After walking out of the room I felt like I just stepped out of the SATs. I answered as many questions as I could and hopefully got most of them correct.

Carter and Luke are all about questions. Where are we going? Who will be there? Do I have to take a nap? But sometimes they come out with some big questions. Carter decided on this one a couple of days ago. “How come God can see everything and everyone? Isn’t that hard?” I did my best to answer him and thankfully he was pleased with my answer. At least I passed his test.

Exhaustion

If I am still moving as fast as I can, have I reached the point of exhaustion yet? Tired, no time for that; exhausted…probably if I sat down for a moment but no time for that. Since Brayden was born I have been moving as fast as I can. Every day has something planned. The days that we are actually home I am moving I fast as I can to play catch up. The past six weeks, Brayden had more than 20 appointments and we even cancelled some because of his surgery. Since Brayden just turned one, we had to make the rounds to each specialist we have seen over the past year and some new ones. Amazingly, we see all of these doctors and Brayden is, for the most part, healthy!

Now things would be a bit smoother if he was our only child. Thankfully we have Carter and Luke with lots of “normal” activities to provide some fun and excitement during the week. We do our best to keep the chaos and running around to doctors from affecting them. So we pack up bags, books, snacks, and more to send them to someone’s house or tag along to another appointment. Luke, our three year old, will go and go until he is exhausted. We know when he is exhausted because he fusses, cries and has a meltdown (we do our best to keep him from the point of exhaustion). There are days when I envy that, I am tired, I want to fuss at everyone, cry and have a melt down but no time for that.

Is sleep the cure for exhaustion? Probably not but at least it helps a bit. When I pull the covers over my head at night I am sure that I am exhausted. It is like the days of being at the beach floating in the waves for hours then getting into bed at night and still feeling the motion. Unfortunately my motion is not as calming as the seas. I cannot surrender to the exhaustion. I am a bit afraid of what may happen if I give in to the exhaustion. Will I curl up into a ball and weep for days? But of course, there is no time for that.

My mom just asked me if I was tired. I replied that I would be tired when all of this was over. Just get through the next set of appointments. I meant the next couple of days but really I am not sure when all of this will be over. I know that over time we will not need to see so many doctors but Brayden’s condition and needs are not really changing so he needs lots of care. I love to care for him and be the best mommy I can to him but sometimes it is exhausting.

Well, I have to go, running to another appointment. I cannot think about exhaustion anymore for fear that it might happen…no time for that.

Great Expectations

Knowing that you are going to have a child is filled with wonderful anticipation and excitement. Filled with questions: What will they look like? Who will they look like, mommy or daddy? What baby items do we need? What color should we paint the room? Are we ready for a baby?

Filled with questions but do we stop and think about what our expectations will be? They will go to school. They will play sports. They will go to college, get married, have a family… But what about the small and simple expectations that we have for our little one? They will learn to sit up, then crawl and then walk. The first words will be “mama” or “dada”. We will have lot of play dates and trips to the park to run around.

What do we do if the possibilities of any of those things happening are taken away? Having Brayden made me realize that I am filled with expectations for my children; as each month passes and I try to let go of these expectations. At first realizing that I had all of these expectations that may never be met was devastating. I would leave the doctor offices with my stomach in knots. Expecting to hear good news but walking out with more questions and expectations that where slowly drifting away. What do you mean he is going to have extreme difficulty walking? We may never hear him speak any words?

Recently, I say this quote in an article about expectations.
“Unfulfilled expectations always cause problems. Having expectations in our culture is expected. We are brought up that way. Having great expectations sounds great however when the expectation is unfulfilled, we become disappointed.”

It is not to say we do not work towards him being able to sit up, talk or walk. Being in the moment and celebrating the small things that he does is the only way I have found to refrain from expectations. That way anything that happens is truly up to the Lord. Of course He can exceed any expectation we may have and probably not in the way we expected.

"Involved"

What does it mean to be involved? Complicated, difficult or high maintenance? Have you ever been described as being involved? During Brayden’s recent hospital stay, I over heard our nurse speaking with the head nurse. She was asking how she was doing since she was handling a patient that was so involved. I felt myself stop for a moment. Involved? Brayden is involved? I looked at my sweet little baby’s face. He was just lying there, not crying, not asking for anything and he is involved? I know that the nurse did not mean anything negative by the statement. I could agree with her; Brayden’s circumstances are bit high maintenance. He was in the hospital for a G-tube but while there we dealt with seizures and rheumatology. On top of that he is one year old but developmentally close to a three month old and visually impaired. So I guess that he is involved. Brayden has been such an easy baby. He has been sleeping great for many months, he rarely complains, he handles all of the doctors, nurses and therapists constantly poking at him and pushing to do things that are a struggle for him. For everything going on, he is low maintenance. It is hard for me to realize that he is “involved”. I never thought of myself as having an "involved" child. Those are the special families that you sometimes see out and about pushing their handicap child in some sort of devise or gently leading by the hand. I know that he has a lot going on but I try to stay involved in each moment and take it moment by moment. That is all I can do.

Journey through Journal

This past couple of years have been a roller coaster ride. April 17, 2007 our son, Brayden, joined our family. From that moment on, I am continually reminded that our life is the Lord's and He is in control. This blog is a place for me to put my thoughts and journey into writing. I have never been one to journal but this past year has filled me with so many random thoughts and emotions that I need put to writing to help make sense of it all. This is my journey being a mother to Brayden, a handicap child.

Some background on our precious Brayden
In the fall of 2006 we found out that we were expecting our third child. The pregnancy went pretty well, despite extreme morning sickness. The sonogram looked great and we found out that we were having our third boy!
On April 17, our third son, Brayden, joined our family. The day after he was born, concerns about the size of his head were expressed. His head was extremely small; it did not make it on the growth chart. Tests were done for exploration. He appeared to being doing well, we thought all of the tests were precautionary and everything was fine. Brayden had a head ultrasound and it revealed that he was missing part of his brain and had additional abnormalities. The ultrasound could not provide a clear picture and we were instructed to schedule a MRI to review his brain in further detail after he was three months of age. Thankfully Brayden was nursing well and he was able to come home with us.The next few months were filled with tests and specialists. All of his major organs needed to be checked to rule out additional complications. We saw just about all of his insides, all of which were functioning and doing well. The big test was the brain MRI. The MRI revealed that Brayden’s brain was missing parts and the rest was abnormal. Today we are still learning what all of this will mean for his life.

Brayden struggles with seizures and we try to regulate them with medication. He is severely visually impaired. Brayden has a G-J tube and is feed by j-tube (into his intestines) for about 20 hours a day. He struggles with chronic vomiting and we have been in and out of the hospital for it...alot. But at home we pump his stomach, by a big suction machine, several times a day for about 30 minutes. Developmentally he is close to a newborn. He cannot hold his head for more than a few seconds. He needs constant full support.

Brayden sees a list of doctors and specialists on a regular basis: neurologist, ophthalmologist, occupational therapist, physical therapist, feeding therapist, vision therapist.

One of the big questions is his condition, handicap, label, etc…Well, it all depends on which doctor we are seeing and what part of his body that particular doctor is looking at. Brayden has a lot of things going on and here is what we have figured out so far (don’t worry if you have no idea what the terms mean, you can google). We have learned that the doctors, therapists, and insurance use these fancy labels to get Brayden services, treatment or therapy but not one single term describes Brayden.
· To the neurologist: ACC, seizure disorder, cerebral dysgensis, microcephaly, pontocerebellar hypoplasia
· To the occupational and physical therapists: cerebral palsy, developmental delays, mixed muscle tone
· To the ophthalmologist and vision therapist: visual impairment, optic nerve hypoplasia
· To the GI doctor and feeding therapist: feeding difficulties, G-J tube, chronic vomiting

Brayden has a a lot going on and we are still trying to understand what all of this means. Thus my journey is understanding it all.

An updated list of Brayden's diagnosis:
Brain
Agenesis of the Corpus Collseum (ACC)
Microcephaly
Seizure disorder – partial complex seizures
Cerebral dysgensis
Pontocerebellar hypoplasia

Cerebral palsy
Nonambulatory

GI
G-tube, mickey button since April 2008
G-tube replaced with G-J tube Sept 2008
Delayed gastric emptying
Chronic vomiting
GE reflux

Eyes
Visual impairment
Optic nerve hypoplasia