PHOTO DUMP, GRATITUDE LISTS, & AN UPDATE ON KENIDI
I've been obsessed with the instagram app on my iphone4 recently. I love being able to snap a shot, throw a filter & quick border around it and then instantly share it with hundreds or even thousands of others all at one time. Technology today never ceases to amaze me. With that said, I have a blogger on my daily blog reads that I love and I noticed she is doing a "phone dump" of her photos once a week. I thought this was a great idea. For those of you who haven't ever friended me on facebook, you miss out on A LOT of photos I share on there that never actually hit my personal blog. So...I thought the weekly phone dump from time to time would be great to do as well. I figured I'd share some of the photos I've taken via my cell throughout the past 7 days. The top one above was of my Dad holding Kross in his irrigation sprinklers the night before we left Indy. I love that shot. It reminds me of an old vintage image from years gone by or something. The joy that both of their smiles bring to me in that one photo is indescribable. Thank you camera phones!
The next shot is one that I snapped out of the car window as we left the Indiana state line in our rear-view mirror last Friday evening and crossed over into Kentucky via the Louisville bridge. Brent always laughs at me when we pull out of Indiana after our visits there. He tells me that I cry from the time I leave my Dad's driveway until at least Louisville each trip. Truth be told, he's probably right. It never helps when my Dad sends me texts such as exhibit A...(sorry Dad...I know you dislike when I share your texts but word pictures always help tell a story waaayyyyyy better. As a blogger, my job is to tell a story the best way I know how. That involves sharing your awesome words too. Nothing is sacred in our family, I know. LOL!)
Do you see now why a daughter might cry her heart out all the way from Indy to Kentucky after receiving a text from her dad telling her that he misses her already and that she needs to move back home? I must mention that he sends these each time I leave - before I'm ever even out of his neighborhood. See why I love him so much??? It's very clear what an exceptional father he is, isn't it? I know I brag on him a lot but really...this type stuff just confirms it all. I cherish my Dad's text messages. I should've listened to him when he tried to give me the box of Kleenex's from inside his house as I left though. I assured him that I had plenty of baby wipes in the car to use should I need them. Always heed a Father's advice. Always. Even when it comes to a simple box of Kleenex's. Dad's are always right.
At some point in the 18 hour drive back to Naples each time, I finally regain my composure, put away the Kleenex's and regroup. I sit and watch the sky, the clouds, the sunshine or rain as we drive that horrific drive back to Florida. I have high hopes that reciting what I'm grateful for (crayola blue skies, puffy white cotton ball type clouds, the golden sunshine, etc.) in my head throughout the drive will help pass the time quicker. It never does. Eighteen hours is still 18 frappin' hours. No matter how you look at it...the drive sucks. Bottom line. The only time it starts to get better is on the 2nd day - when you're about 45 minutes from home per the Navigation screen that you've been watching the whole 18 hour trip like it's the movie Twilight or something and Edward is secretly placed within the screen somewhere. See...you also begin to get delusional along that drive too. It's a serious side effect. Anyway, back to my point. You roll down the windows and begin to smell the sea salt air. It's a fo' sho' sign that you're in the home stretch now. In no time, you look to your right - and then to your left - only to see scenes like this again...
Moments later...you are driving over the ocean and the sun is setting...reminding you of that gratitude list that is forever embedded in your brain at this point...
Eventually, you pull up in the driveway and are never so glad to get out and touch your feet to the ground in all your life. You hit your bed that night still reciting the gratitude list..."sunsets, Starbucks, my parents, my friends, my kids, my own bed, air conditioning, palm trees, the salt life, my camera, my eyes to visualize shoots, pringals new honey butter stix, the fact that I didn't have to kill my husband this trip because he finally decided to stop at a hotel rather than drive straight through, and so on. Home is good. Real good. However, I have two homes. One where I lay my head every night and one where I lay my heart. You can guess which is which.
The next morning, I always jump up to watch the sun rise over the pond behind our house. It has a magnificent way of shining the most beautiful honey golden light down on the water as well as the tips of the palm tree leaves. The colors as the sun rises are amazing around here. When you live just 5 minutes down the street from the ocean, everyday is amazing around here. Even on the days when the enemy sets out to ruin your gratitude list or your "peppified spirit," you can still manage to always find something to be thankful for. A-L-W-A-Y-S!!! Like being able to stand under palm trees each and every day.
Even when it's raining on the palms and your power is out in your house due to the storm, life is still amazing and the palm trees are still beautiful.
Yes, life is good.
On a final note, before signing off tonight, I wanted to take a moment to thank all of you who posted here on the blog last week, privately emailed me, called, texted, facebooked, etc. in regards to Kenidi's situation. I had no idea that my post last week would provoke such an outpouring of support. It breaks my heart that so many of you are experiencing similar trials in your own lives. On a positive note though, your words of encouragement, advice, and your own experiences helped our family beyond imagine. You guys armed us with so much knowledge that we didn't have previous to my post. Your own journey has helped prepare us for ours. There are no words to thank you guys for your love and true concern for our Kenidi. We are 4 days into her new medicine (Tenex) and unfortunately haven't noticed any positive changes. She is extremely tired because of it and can barely keep her eyes open most of the day. The doctor warned us that this would happen in the beginning and so did some of you who have your own children on this particular medicine. We are hopeful that her body will adjust to the dosage soon. We were told to give the prescription three weeks before we made a decision to switch to resperdal. So...we will give it 2.5 more weeks. It's still very early and we are still very faithful. If it doesn't work, it doesn't work. We'll go to plan B at that point. For now though, I know without a shadow of a doubt that all will work out as it should and that like always...God is leading the way. Again though, thank you to each of you for continually being so supportive of our family in the past 5 years since I began this blog. I always know I can come back here, to my online cyber-space friends, and find encouragement and advice thru this blog when needed. All of you are on my gratitude list.
Much love, Angie
PS...If you'd like to friend me on my personal Facebook page, you can do so by clicking on the following link: ANGIE ON FACEBOOK If you would like to become a fan of my Angie Seaman Photography fan page, feel free to do so by clicking this link: BECOME A FAN I'm always posting new session images there that you never see here on my blog. I also post "casting calls" for models that we need for certain creative shoots there too. It's a great place to keep an eye out on all of the Angie Seaman Photography happenings. No matter what...I just appreciate your support. :)
If Kenidi could verbalize her feelings right now, I'm guessing that these days she'd be packing Kross a suitcase and waving by to him as she booted him out the front door. She loves and adores her baby brother with all her heart but I honestly believe she is just now beginning to realize that he is here to stay and isn't going anywhere. In the beginning, he was like a new toy to her. We had small issues but she was pretty gentle with him from the get go. Because we have slowly but surely been noticing more aggressive behavior from Kenidi over the past year to year and a half, we knew that Kross's arrival would be touch and go with her as well. Over the past 8 months since his birth, I've watched her go from gentle to down right violent with him. We can't sit him down or look away from him/her for even a split second. Her aggressive behavior has not only expelled over and onto him but onto us and other people as well. We battle her hitting, kicking, spitting, biting, pinching, etc. What was once just a melt down when we went to leave the beach or a park is now an everyday occurrence and has caused our normal "out and about" life to come to a screeching halt.
As I sit down to type this, my heart hurts when I reflect back on how much Kenidi's demeanor has changed over the past year and a half. She really is a totally different child. We can no longer fly on airplanes or travel period because of the outbursts, aggression, and publicly displayed melt-downs that involve just about anyone within a 20 mile radius of us. We can't take her out to eat at restaurants or stroll along and hold her hand thru the mall anymore. If she is out and about, she has to be strapped into her special needs stroller. There is no rhyme or reason to her madness. We used to think it was an attention issue but now we realize these are uncontrollable outbursts where she will lash out at anyone within her reach. I was in denial for a long time...just believing and hoping it was only a phase. Ya know...the kind of stuff they pick up at school and bring home??? However, the behaviors have only increased. Each day she is growing bigger and stronger and it's becoming harder and harder for me as well as everyone else to manage her when she lets loose. I tell you all of this because just as I have in the past 5 years since beginning this blog, I'm writing to find therapy in the moment. By the time the evenings roll around each day, I'm physically and mentally wiped out. I've had numerous days of emotional spells where I just finally burst into tears from the exhaustion, frustration, and utter heartbreak as I watch our daughter act out in ways she is unable to control. Ways we aren't able to control anymore either. Kenidi is still the loving, affectionate child she's always been. However, there is a side to her personality now that is tough, harsh, and dangerous.
I had a neurologist in Miami last year witness a melt-down of hers and his exact words to me were..."You know there is medicine for this?" I walked out of his office, pushed open the handicap doors to the parking lot, looked at my Mom and swore to her with fury in my eyes that I'd never go back to that doctor again. I can remember how angry I was with his words. I couldn't believe he would suggest that I needed to medicate my child. Almost a year later, I now wish I would have headed to his advice then. I was in denial.
So...a big reason for our trip back to Indy this time was to have Kenidi seen by her Riley doctors here in Indianapolis. Brent and I took her and both kids this past Tuesday morning to her appointment with her neurologist. He was also the geneticist that ran the tests on Brent and I right after we were told of Kenidi's diagnosis back in 2005. After two hours in his office, Kenidi had reached her limit and was exhibiting full on meltdown behavior by the time he saw us. She proved to him, the child psychologist on hand, as well as a student resident doctor that she had the strength and ability to take everyone of us in that room on and then beat the hell out of anyone she had the chance to. It's sound rough and it was. Thankfully though, because what she did in front of the docs, we didn't have to do too much explaining. It was clear that medicine was necessary. I left the hospital that day with mixed emotions. I was feeling defeated, deflated, and like a failure as a Mom. I had prayed for so long that I could "fix" her without medication. Her appointment Tuesday was confirmation that there was no longer anytime left for my attempts to "fix" her. This was our reality and something had to give. Our family life is suffering because we can't venture out like we used to. Brennen pays the price for that. Kross someday might too. The thought of how much things have changed as Kenidi's demeanor has changed is gut-wrenching. There have been talks of taking vacations without her, dinners out while she stays home with a sitter, etc. It all rips my heart out to the core. She's our daughter - part of our family. She should be experiencing these journeys, these memories with us.
In order to begin the new medication, she had to go for an EKG first. The doc wants to start her out on Tenex. (sp?) If there are any of you out there who have any experience with this drug and children, please email me. I'd love to hear your feedback. The EKG was done today and now we wait the results of it to make sure it was normal before she can begin the tenex. If the Tenex doesn't show positive signs of working in the next two weeks, they are going to move on to the big guns as they called it. Risperdal. Risperdal is used to treat strong and irrational behaviors. It's scary. Both medicines are. I have no idea what the future holds but I'm praying with every fiber of my being that these medicines do more help than harm. Only time will tell. My how things have changed.
So...in my usual attempt to always find laughter and positivity in my life...I saw a photo on pinterest today and decided to do our own version of it with Kenidi and Kross. I grabbed my camera and used it as a therapeutic tool. The end result is what you see below...
I'm giving all of the glory to God - as always - for this journey. I've prayed to him with my expectations of healing for Kenidi. I've pleaded with him to grant us peace within our family and mainly within her little body. I'm no longer in denial and realize that this is the only option left. We are left with no other choice but to help Kenidi thru medication. I'm hopeful that these meds will work. Please pray with me over the coming weeks as we embark on yet another foggy journey in the Seaman family. God is leading our hands and giving me - and us - the strength to keep putting one foot in front of the next. For those of you with special needs children, I know you understand this TOTALLY. I owe my family a HUGE thanks for helping me to combat the meltdowns Kenidi has displayed since arriving in Indiana. I couldn't have made it thru the past 2 weeks without them. Transition is horrific on Kenidi's little system. If you take her out of her routine, you can expect all hell to break loose literally. God love her...
Thanks for listening to me today. I know it's been a long time since I've "dumped" on all of my readers like this. Sometimes you just need to purge everything that is floating around in your head though and today was my day. As you all know, I purge via writing. I journal to heal. Always have - always will. Yes, my writings have put my family on major display at times in the past but I don't care. It's my life. It's my truth. It's me being real. Take it or leave it.
Thank you God for being my Rock. My savior. Literally. You've heard my prayers and you know my expectations. Please heal my baby girl.
