One year ago today

AUG 31

One year ago today we sat in Children’s Hospital waiting for Brayden’s MRI. The test of all his tests. The test that showed us in black and white that Brayden’s brain was extremely abnormal. Before the test, we hoped his brain was well developed. We had fuzzy ultrasound pictures that showed some problems but maybe he had a chance at leading a somewhat normal life, of course with some limitations. The test showed us otherwise. The test results came. The doctor gave the awkward pause and then the hard to hear explanation of the findings. Brayden’s brain did not develop is several areas, some parts he is completely missing…

One year ago today, Brayden was a newborn with developmental milestones to be reached. One year later, we are still striving for developmental milestones, creating our own milestones and celebrating any milestone that comes Brayden’s way.

One year ago today, we had the test of all tests. Not realizing that each day of Brayden’s life would continue to be a test. A test in understanding, trust, hope, patience and love.

I actually said it out loud

Have you ever had someone say something to you that was just rude and inappropriate? You get flustered and cannot get you wits about you to say something back. Then you find yourself replaying that moment knowing exactly what you coulda , shoulda, woulda, said.

Well, I had one of those moments but I actually said something back.

Today, I took the boys to the most amazing park in McLean, VA. It is designed to be a fully handicap accessible park and has an actual carousel that the children can ride, including ones in wheelchairs. I was excited to go and let Brayden try out few things. We arrived first thing in the morning. We pushed Brayden's KidKart all around the jungle gyms and he got to follow his brothers around. Carter and Luke were excited to show him all around. I really wanted to have Brayden try the handicap swings, designed for child that cannot sit up. Much to my dismay, everyone else was using the swings and we just had a brief moment to try it out. I am pretty sure that Brayden was the only actual handicap child in the entire park. We will have to go back another time for a good try.

By lunch time, the park was packed. Every square inch was covered with eager children. The spaces in the parking lot are limited and many people have to use satellite parking down the road. We did not. We have that wonderful handicap tag. I love it because I have enough room to set up Brayden's KidKart and load him in with ease.

We set up for lunch at the picnic tables. The boys were sitting with their Aunt and cousins while I went to the car to get the cooler. I was reaching into the car when a woman walked behind me. She said, not so quietly under her breath and with a lot of sarcasm, "It must be nice to get such nice parking space." She said it loud enough for me to hear and was definitely nasty. It seemed as though she thought I was not justified to be using one of the front parking handicap spots (there are a lot of handicap spaces at this handicap accessible park). I turned around and said, as nicely as I could, "We have to have some perks for having a handicap son in a wheelchair." Her faced turned white and she quickly walked away.

I actually said it out loud. I was still flustered because I said it.

Check out our family blog for pictures of the day.

Left Out

Carter, my oldest, is starting kindergarten next week. I know that he will handle this new step in his life with ease and excitement. He has always been able to step in to new situations without much concern. He might be timid at first but that quickly fades and he will be comfortable with new friends. As his mom, this makes me more comfortable with him starting kindergarten. Of course I have normal concerns about taking the bus, adjusting to a new teacher, new school and new friends. I was talking with a neighbor, whose son will be in Carter’s class. We both agreed that we are concerned about our children fitting in, making new friends and not being left out.

Isn’t that everyone’s concern; for ourselves and our children? No one likes the feeling of being left out.

My heart aches when we are at the playground and I see a child being left out. I never want my children or any child to feel less important and left out.

This past week we joined the Jenkins families at the lake. I was concerned about going weeks before we went. I did not know how Brayden was going to handle the situation and I did not know how I was going to handle Brayden handling the situation (did you understand that?). The first couple of days were a bit rough for him. He seemed overwhelmed with being in a new place and all of the noise that comes along with cousins playing everywhere around him. He vomited several times and threw in a few seizures to start off the week. One vomit was so big that the entire pac-n-play was covered and required a huge scrub down, yuck! Immediately I was feeling left out. I knew that I needed to stay at the house with him instead of heading out on the boats. Brayden needed to settle and adjust. I was concerned that once we are able to take him on the boat, things would not go well for him. Then we would have to have someone drive the boat back to drop us off and we would disrupt everyone’s fun.

Over the summer we have discovered that Brayden does not sweat. He does not seem to have the ability to control his body temperature effectively. Instead of sweating his gets a fever. Just by touching him, you can feel how hot his little body is but not a drop of sweat to be found. The doctors are finding that Brayden’s autonomic nervous system does not seem to function properly. Yet another reason, the boat might not have been a good idea for him.

I always want Brayden to be a part of the action. He actually is a people person. He likes for the noise (not too much noise) of people talking and playing to surround him. We found that he seems to call out for people to come and be around him.

The weather at the lake was marvelous. Cool in the morning; cool enough for Brayden to join everyone on the boat. After a rough first couple of days and my worries, Brayden loved the boat. He did not mind the life vest, the boat ride or the kids playing around him. When the boat was parked by the shore for the children to play, we placed Brayden in his KidKart and he was happy just being there.

This summer has been difficult for Brayden. He had so many doctor appointments, more tests and hospital stays. I have been feeling left out because not being able to go to bible studies, play dates, parties or just popping over to a friend's house. My time has been consumed with taking care of my boys, a bit of tunnel vision. I talk with friends and neighbors; the world continues to move on with or without me being there.

As least for the lake we were there, in the action. No reason to feel left out.

Look into my Eyes

My brown eyed boy, my blue eyed boy and my hazel eyed baby boy.

Have you ever heard that the eyes are the window to the soul? You begin to understand someone, who they are, by looking into their eyes.

I truly enjoy looking in to my children’s eyes and finding that connection, a special bond. Just one glance and they know what I am thinking; whether it is a glace of “I love you” or the glare that “you are in trouble”.

I can tell what they are thinking. You can see in Carter’s eyes that he is very contemplative, pondering anything that comes his way. Luke’s eyes are searching for fun and adventure.

Brayden’s vision capabilities are extremely limited. His optical nerve, the connection from the eye to the brain, is abnormal. The occipital lobe, the part of the brain makes sense of what the eye is seeing, is extremely abnormal. Imagine high school biology class, the brain has ripples and is wavy; Brayden’s occipital lobe completely smooth and small. We found that he may see something but very little. He prefers to “look” at motion from his peripheral view; straight on is too much for him to process. He will glance at reflective objects, like the back of CDs or shiny balloons.

Discovering that Brayden’s ability to see was extremely impaired was devastating for me. My biggest fear is not having a strong connection. I want him to know me and for me to know him.

Seeing is an enormous learning tool that was never given to Brayden. Seeing a parent smile, the baby can smile back. Seeing the parent coming to get them, the baby feels safe. Seeing an exciting toy, the baby may try to reach for it. Seeing the food coming, the baby can learn to open their mouth in preparation.

I tend to forget that Brayden is visually impaired (that is PC for blind), he has other medical concerns that require more attention. When coming in to his room in the morning, I try to remember to talk softly before I reach in to his crib. If he does not know that I am coming, he is startled and tends to get upset. I forget to mention at new doctor visits or hospital stays that he cannot see. His other problems are usually why we are there and the vision impairment is not at the top of the list. I forget that Brayden's lack of seeing is a large hurdle to his development and learning. He has to learn to compensate, as do we.

I stare into Brayden’s eyes, longing for that connection. I stare into his eyes wondering what is behind them, what he can see and understand. I stare, he stares. He stare is mostly vacant. I know that he is in there and we get small glimpses of him in his noises, cries and just nestling into our arms. We have to find ways to compensate for him not seeing, find ways to connect.

Help Wanted

*Disclaimer: this blog is not about me asking for help it is just me venting my frustrations.

There are not enough days in the week. Brayden averages 4-5 appointments a week; thankfully Brayden’s occupational and vision therapist come to the house but we have other therapies and a hand full of doctors to see on a regular basis. Having several appointments is our typical week. Living about 30 – 60 minutes from most of the offices he goes to, we spend a lot of time out of the house.

School is starting up in a few weeks. Carter will be going to afternoon kindergarten from 11:30 - 2:30. Luke will be going to preschool (which is 30 minutes away) T, W, Th from 9:30 – 1:30 p.m. Some how I have to manage getting Luke to preschool, Carter catching the school bus, picking Luke up from preschool and picking Carter up at the bus stop; all the while finding time for Brayden’s countless appointments. I have no idea how to do this.

From the start, we have struggled finding help with Carter and Luke. It is not a consistence time that we can schedule with someone; it is all based upon Brayden’s crazy schedule of therapies and doctors, which can be very last minute. Carter and Luke have been dropped off at so many places. I desperately want to find a good system for them when school starts. I am tired of disrupting their lives and not knowing who will watch them.

I have a hard time asking for help, admitting I cannot handle all of this and I do not have it together. Many people have offered help but it is hard to know how much to ask of them and sometimes it is not that kind of help that is needed. People that I thought could really be of help have turned out to be no help at all.

Today, I requested a VBS camp to accept Luke, even though he is too young. He would really enjoy VBS but the truth is that I need childcare for him. We have five appointments that week. Carter is going to the VBS so I needed a place for Luke. I felt uncomfortable asking this church to make an exception for my child. Why should I be an exception? I asked the therapy center to change our appointment time in the fall so I could get Luke and Carter to school. The center had to call a few other families to move around the schedule. I felt uncomfortable asking. I had to make an appointment with the pediatrician, whose schedule is full for weeks. I asked if she could squeeze Brayden in just a few days because we missed his 15 months check up due to the unexpected hospital stay.

I have a hard time asking anyone to help or make an exception for our family, especially when I cannot reciprocate. They have their own lives, with busy schedules and do not need my ever changing schedule disrupting their day. The next couple of weeks I will be making those humbling and uncomfortable phones calls asking neighbors (who are wonderful) and close by friends to help with school pick ups and drop offs. Maybe we can hire someone for random hours.

I just sat in the car today and cried. I am trying to make everything work. It is a puzzle that I am trying to align and fit all of the pieces in to but I have not figured it out yet. I do not want Carter and Luke to feel this chaos and feel like Brayden’s life is first priority. I do not think that they feel this way but I am always concerned. I have no idea how to get everything done; school, appointments and possibly squeezing in some actual fun activities (even if it is a drive threw the McDonald’s to get the boys a milkshake).

I saw this in one of my “disabled child” books: Contrary to popular belief, help is not a luxury, a self-indulgence, or a sign of weakness. It is a necessity.

It is difficult to ask others to switch schedules, make exceptions, drive to our house to help and try to understand our circumstances. I do not want to inconvenience people. I really do not want to inconvenience people. I do not want people to help because it is out of obligation (we know when they help out of obligation, the attitude behind the "helping" is not well hidden).

I do not know who or how to ask for help.

I need help.

Back to the Future

An 80s classic movie is Back to the Future. It was one of the first "grown up" movies I was allowed to watch. Michael J Fox, time travel and the Dolorean, could you ask for a cooler movie? The whole idea of going back in time is an interesting idea…

I just celebrated my birthday this past weekend. My grandmother always told me that as you get older, birthdays become more nostalgic; pondering the days of the past...she was right. With each birthday, time goes by faster and faster. I cannot believe that I am many years out of college, a wife and mother to three boys. How did this happen so fast?

I started thinking, if I could go back in time and talk to my college self, what would I say? Tell myself about my life to come; the places I will live, friends, Biffs to watch out for, my husband and children. Would I talk about the joys and hardships of the coming ten years? Would I tell myself about Brayden? If I did tell myself about Brayden would or could it change anything?

This time last year we could barely understand Brayden’s conditions. I thought that if I could fast forward the year then we would be in a place that we could handle the idea of having a special needs son. We would know what we needed to do for him and his limitations. We are not there yet. I really thought that this past year, things would be getting easier for Brayden and our family. The truth is things are getting more complicated. As he gets bigger, his problems are getting bigger. The blessing is that we love Brayden more each day and we are learning more goods things about him.

Part of life is not knowing what the future may bring. We cannot go back and change things in the past (I would not change anything). We cannot see in to the future.

It makes us trust in the Lord.