Wednesday, November 28, 2012

TENDER MOMENTS



“Nami is amazing. Did you see that he tried to feed McKay bread? Incredible! I've never seen him willingly part with food.” – said my sister, Meridith, in an email to me, after attending her son’s birthday party. This statement echoed many that were made by my family when Nami did something he’d never done before.

Family gatherings are usually very stressful for me. I watch as Nami wrecks place settings, plays with decorations, and throws toys, furniture, and any other item he can get a hold of around the house. He drinks out of any and every cup he can get a hold of, which sometimes is up to 27 cups scattered around my parents’ counters. If any food is left within arms-length, he grabs it and eats it. It could be a stick of butter, an onion or a bowl of frosting. It doesn’t matter. At mealtime my kids eat A LOT of food and they eat it FAST. When their food is off their plates and Salesi and I refuse to give them any more of the food off our plates, they start making the rounds. If anyone is not looking at their plates, my kids will seize the moment and steal their food. My family is not bothered by Nami’s behavior, always reassuring me that he’s okay and that they want me to relax and have a good time. I feel I’m getting better at it, but it still stresses me out. Since Kope is only 21 months old, he mimics everyone’s behavior, including Nami’s. The pair of them is quite a handful.

This weekend was like most others where we have a big family meal with lots of people. We went to my sister’s to celebrate her son’s 2 year birthday. She invited her good friends to come. This family has two 15 year old boys (McKay and Alex) with cerebral palsy and they can’t walk, talk or feed themselves. Before dinner started I was busy shoving bread into my kids’ hands, keeping them off the table, and making sure they didn’t tear the place down. At one point, my mom came into the kitchen and said, “Annaka, did you see Nami trying to feed McKay his bread?” WHAT!?! Nami doesn’t share food, he takes food. After eating, I went into the living room and sat with Alex and McKay. I watched as Nami continually went up to each of them and talked to them in his own little language. I saw Nami try to help McKay take a drink out of his cup. McKay smiled at him. It was like Nami could sense their special spirits and they could sense his. This truly was extraordinary.

What was equally amazing to me was how Kope interacted with McKay and Alex. He kept going over to them and talking with them. He was especially taken with Alex, tapping his leg while talking to him. He climbed on Alex’s wheel of his wheel chair in order to get closer to him and tell him his stories. Of course we pulled him right off, but I was so touched to see how he had a great desire to interact with these beautiful boys. It reiterated to me that he is truly meant to be Nami’s brother. He is understanding, loving and doesn’t judge.

These boy’s mother wrote to me, “It's remarkable how some kids just gravitate to [our sons], and how interesting that Nami would see their need and try to help them.  What a sweet boy.” I felt like they were kindred spirits and it was a beautiful thing for me to witness. I love to capture sweet moments like this where I really get to see who my boys are.


Wednesday, November 21, 2012

A SMALL ACT OF KINDNESS = A LARGE GRATEFUL HEART



Learning to negotiate life with an autistic child takes time. When Nami was diagnosed with tuberous sclerosis, we knew it was possible that he would be autistic. The older Nami gets, the more difficult his behavior becomes. He is no small child, either, reaching 23 lbs. at 6 months and 32 lbs. at one year. Luckily he has only gained about 10 more lbs. in the last 2 ½ years. Nami’s unpredictable behaviors have increased with his age and weight. When he gets angry he bangs his head, throws things, punches, hits, and loudly yells and cries. When these behaviors started increasing, we took him out to public places less and less because we never knew what would set him off or how others might react. Nami can only say a couple words, so he can’t tell us how he feels or what he wants, often resulting in bigger and louder displays of frustration.

Our Chunky Monkey
Leaving the house is a huge chore. In addition to all the possible medical emergencies we have to plan for, we have think through and plan for multiple behavioral scenarios, including a quick exit. The preparation required in order to leave is another reason we don’t go out much. I’m so tired by the time we leave that I often no longer want to go. When Nami was a baby, we could take him anywhere. Then when his autistic behaviors started becoming more apparent, we had to learn how to deal with them. Bad experiences in public were a rude awakening to the fact that things were drastically changing.

Last year, my husband and my schedules were such that we were only awake and together a few hours a week. In that time we had to get an entire week’s worth of errands run or else one of us would have to take Nami with us. Pressure and exhaustion was constant and we couldn’t always get everything done. One time I had to run a quick errand into a grocery store. I just needed to pick up two things…it would be a quick in and out. I had no choice but to take Nami with me. On our way into the store he started screaming. I had no idea why he was mad so I couldn’t calm him down. I just thought, “I only have to get a couple things, so I’ll hurry.” After picking up the second item, Nami flung himself on the ground and was screaming and kicking. I picked him up and ran with my screaming child to check out. I wanted to leave the store but I knew I wouldn’t have another chance to go without Nami for days. As we arrived to check out, a woman standing in line stepped back and offered me her place. I gratefully took it and as I was checking out Nami flung himself on the ground again and continued screaming, kicking and forcefully banging his head on the tile floor. It seemed like everyone from three lines just stood and glared at me or gave me looks of horror. I wanted to yell at all of them to give me a break. I purchased my items and then picked up my screaming child. As I did so I met eyes with the mother who let me in front of her. She had so much compassion in her eyes.

I couldn’t get out of the store fast enough. I felt anger, rage, and frustration. As I was able to distance myself from the situation, I realized that I had witnessed outbursts in public before which helped my anger towards the customers dissipate. Even more than that, I was profoundly touched by the small act of kindness from this mother. This experience shocked us into recognizing how our lives were changing, but I was so grateful for the empathy of this mother.

Sunday, November 18, 2012

SHEDDING SHAME



There are many reasons why the idea of blogging was difficult for me. One of the reasons I was hesitant to start this blog is because I realize I’m not the only one who has challenges. I had somehow convinced myself that by talking about my experiences, I may come across to others like I think I have a harder life than them. No one is exempt from challenges, and I don’t claim that mine are any harder than the next person’s. I also feared exposing the real me in a public format. (I am just now getting used speaking openly face-to-face with people.) I couldn't understand how anyone would share their stories in such a public format as a blog or even a book because I couldn’t imagine doing it myself. I wasn’t against others doing it, but I was definitely against myself doing it because of the fears I had. Well, now the anti-blogger is blogging.

I know that one reason I have been so “secretive” about my life is that I feared that if I didn’t come across to others as having everything under control, I was weak. I often even hid my struggles from my family (ridiculous, I know, especially for those of you who know my family). I feel like I should be able to do it all, but when I can’t, I feel inadequate. As weird as it may sound, I have realized that I felt shame about “letting” my life get out of my control. “Letting” is in quotations because that’s what I felt was happening. I now realize that sometimes things just happen to us that we cannot control and it’s not always about the decisions we make. It was very contradictory in my mind because I did not view others the same way as I viewed myself. I gave their situations the difficult value they deserved and never saw it as a character flaw in them. I’ve always been prompt, organized, dependable, etc., and I felt guilty because all those things were no longer a part of my identity. I felt shame because I felt I may be coming across to others as being undependable or irresponsible.

I have learned a lot while going through my trials. One thing that has recently stood out is the amount of difficulties that everyone endures in life. I’ve known this for a long time, but it seems like the more difficult things become for me, the more I recognize the challenges that others endure. It is inspiring to see the strength that emerges in others during difficult times. They are an example to me. I have realized that through our challenges, we all learn similar things. A deeper connection is made with people as we share our experiences and gain knowledge from them. An example that comes right to mind is of my little brother. Although he is four years younger than me and has experienced a life full of challenges far different from mine, we seem to be learning similar things at about the same time. It has been extremely helpful to discuss our ups and downs and lessons learned with each other. He is so courageous and such a great example to me.


I went to a conference yesterday that my brother was a part of. (He posted about his experience at http://www.mountainstosummit.com/2012/12/why-am-i-blogging.html.) He did AMAZING by-the-way! It was so interesting listening to everyone on the panel and how their lives are so different than mine, yet the theme of the lessons they learned were the same as mine. In fact, they were the exact topics of many of my posted and not yet posted blog entries including: God will not give you more than you can bear. You need others and they need you in order to progress. We ALL make mistakes, so let’s be the one who is understanding…maybe as we are it will spread to others. What may come across as insensitive or even cruel comments and actions by another may often be a misunderstanding or lack of education on their part, so sometimes the person experiencing the trial needs to be the one to educate them. As unfair as this is, it is a way to help others understand. Your specific trials can end up being blessings that help you understand God’s grace. Our trials can give us compassion toward other people; everyone has difficulties. Sometimes we don’t talk about our issues because of the shame we feel, but talking about it can help us feel less shame…we may even help another as we share. How we decide to share our experiences will vary, some may be VERY public and others may just share with close family and friends…the approach you choose for you is okay and the approach others choose is okay for them. I’m sure there are many more themes, but these are the ones that come to mind. I know that starting to be more open and real about what I’m experiencing has helped me connect more with others and glean helpful life lessons from them. I love my family, friends and acquaintances and appreciate life lessons they have taught me through discussions and example.

Tuesday, November 13, 2012

A MOTHER'S INTUITION



As a mother, I am always asking myself what decisions are right for me to make for my children. I want to act enough, but not too much. It’s hard to strike the right balance. We all know those mothers who overreact…well, maybe each of us ARE those mothers at one time or another. How do we know when we are being a melodramatic mother and when it is a mother’s intuition?

I had an experience recently when Nami got sick. I did everything right. I put all my previous experiences with his medical emergencies into action. My conversation with myself went something like this: “Okay, we’ve been through this many times before…I got this. Give him Tylenol before he spikes a fever. Done. Call the doctor. Wait, my dad is his doctor and he is out of the country AGAIN. Okay, call his office anyway. Make an appointment. Done. Do I really need this appointment or am I overreacting? Everyone is going to think I’m being too dramatic. Go with your first instinct. I don’t know. I’ll just see how Nami does over the next couple hours before the appointment.” I continued to debate about this even asking my husband, “Do you think he needs to go? I don’t know if he needs to go. He’s probably alright. Salesi, what do you think I should do?” He replied, “I don’t know. What do you think?” After debating with myself all morning I told Salesi, “I’ll just go to make sure there isn’t anything wrong, but I bet it’s just a little cold.”

Upon arriving at the doctor’s office, Nami could no longer walk. I was glad I decided to come. I couldn’t tell if he was seizing or if he was just really sick. He vomited. I worked with my Dad’s fantastic staff to get him the care he needed. The nurse practitioner checked Nami’s ears. Yep, an ear infection was the culprit. What to do next? He was given an injection of antibiotic and we continued to watch him. Here’s my continued conversation with myself (though mostly out loud): “Okay, I think he’s seizing. What does it look like to you? Do you think he’s seizing? I don’t know if I should give him his rescue medicine or not. Okay, I think I’ll give him his Diastat. Done. Is he still seizing? I can’t tell if he’s still seizing. I hope not because now we’ll have to go to the emergency room. Well, at least it’s within walking distance. Aahhhh! I don’t think we need to go to the emergency room. I’m just going to watch him for a few more minutes.”  And so went my mind for the next 30 minutes or so. I even carried Nami downstairs and out the door with one of the staff before talking myself out of it and heading back up to the office to wait a little longer.

Even though Nami’s situation didn’t seem to be getting worse, he wasn’t getting better. I finally relented to my initial feeling to take him to the emergency room. I carried my 42 lb son down and out of the office, across a couple parking lots and into the emergency room. It was unclear if he was still seizing, so I decided just to sit in the waiting room until I was sure. After about 20 minutes of thinking Nami probably was going in and out of a seizure, I relented to my nagging feeling and the encouraging emergency workers and in we went.

The next two hours were awful as Nami’s seizure got increasingly more severe, to the point he was jerking uncontrollably. His seizure grew into a full tonic-clonic seizure and he was foaming out of his mouth. In spite of his usually great veins, it took the emergency workers 9 pokes before they finally got his IV in. In the meantime, they had to give him a shot of Ativan, even though we were trying to avoid that particular drug. What followed were full doses of Fosphenytoin and Phenabarbitol which caused Nami to stop breathing. At times he had up to 10 people working on him and they could not stop the seizure. He would have to be intubated and life-flight was called. He was given propofol and rescue breaths were delivered. There were a couple failed attempts before a successful intubation. Then he was prepped and sent with life-flight (this was his second time). He was admitted to the PICU at the children’s hospital.

 

My initial reactions were, “What just happened? How could this be? This is the first time that I KNOW I did everything possible to avoid the emergency and it still happened. It doesn’t matter. This is our situation. After this experience I know more than ever just to rely on a mother’s intuition.” Now the trick for me is to figure out how to realize when it IS my intuition that is guiding me and not second guess it.

P.S. A big THANK YOU to all my Dad's staff and the awesome ER doc and staff who took such great care of our son.
P.P.S. Another big THANK YOU to all my family members who continually drop whatever they are doing to help us out. I love you guys!

Saturday, November 10, 2012

A MOTHER'S ADVICE



If anyone else is like me, they tend to be self-deprecating. In many ways, I feel better about myself the older I get, but in other ways I’m much harder on myself. I often put myself down for not being stronger. I tend to be harsher on myself than I think someone else will…I guess as a form of self-protection? If something is challenging for me, I automatically think that I must be weak. I tell myself that I shouldn’t be feeling so bad, that I’m being too dramatic and thinking things are worse than they really are. Everyone telling me this is not the case doesn’t reassure me. Maybe it’s a type of body dysmorphic disorder but of the mind. I don’t view myself the way others view me; I have a distorted view of myself. I also have a problem with feelings of guilt. Every time I see someone who is worse off than I am I cry. When I see natural disasters or the results of war, poverty and genocide I think, “Why are you feeling bad for yourself when many are so much worse off than you?” I feel guilty thinking my life is hard because I know what blessings I have.

If anyone else’s mom is like mine, they give the BEST advice! Her response to my putting myself down is this, “Someone else’s broken leg doesn’t make your stubbed toe hurt any less. This is your reality and it is very difficult for you. Don’t minimize what it is for you. It doesn’t make you weak to have challenges. Life is full of challenges. You figure out how to handle them and they make you grow. The best thing to do is to get moving and start doing something so your challenges don’t paralyze you.”

I try to remember how important perspective is. Each of us has our own lives that shape who we are and how we view the world. What is challenging to one may not be challenging to another. We cannot gauge how someone else's difficulty feels to them because we cannot know how they think and feel. We only understand how our difficulty feels to us and hopefully that gives us the insight to know how to help someone else. Even if what I’m going through may not be as difficult for someone else, it’s okay that it is difficult for me and it is great to realize the lessons I am learning. I have learned I don’t need to feel bad about myself because I find my life difficult, and I have also learned that, in spite of a multitude of blessings, it is okay to still feel hurt because of the nature of some of my challenges. I have realized that I can feel gratitude for my blessings even in the midst of a difficulty…struggling and gratitude can coexist. It is ironic how allowing myself to admit something is difficult actually makes my burdens feel lighter.

I always know who to call when I’m having a bad day. Aren’t moms the best!?!


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