I've heard several people comment on their "word of the year" and I really like the concept of focusing on one area to really lock into and try to improve upon. The word I have felt (screamed!) prompted to address this year is "busyness".
Let me be the first to say, whenever someone asks me how we are, my reply is typically "busy". Or many a time I've shared on the blog just how chaotic our life seems to be. This year, 2016, I'm making a goal to slow the heck down.
In our culture, exhaustion is a status symbol. If we share with others just how busy our lives are, it is implied that we live meaningful lives that others can marvel at all we have to do. I have noticed often that many people actually brag about how chaotic their life is, as if to prove just how busier they are than you. You ever felt that way? I have.
In the first few weeks of 2016, my Lifegroup (aka church small group), my daily devotional and a Bible study I'm in have addressed "busyness". When my life feels chaotic I'm stressed, anxious and quite frankly, not very kind. I lash out on the people I value the most and feel pretty terrible. And I don't really like that Emmalee.
We had a pretty stressful close to 2015, and our calendar isn't any less full entering the new year, but in gaining a little perspective about slowing down mentally and physically, I already feel so much more peace in my life. There have been a good many things already this year that would typically cause that twisting knot in my gut whenever I thought about them, but I'm finding myself leaning into Jesus, praying and trusting that issues will be resolved and chaos will not reign.
There's so much we lose out on when worry consumes us and busyness keeps our minds (and bodies!) racing. I have been a victim to this for much of the last several years. It's not easy. Schedules are insane, commitments are never-ending, the Mom-brain never shuts off, but for me, what matters most is not feeling frazzled and actually being able to connect with my family and my friends.
With all the craziness 2016 is sure to bring, I'm committing to myself that "busyness" will not consume me this year. I will not take pride in it. I will do my best to lean into Him. I'm fully aware there will be failure on my part, but in recognizing it as an issue for me, I already feel like I'm a step ahead. As my favorite devotional, Jesus Calling says, "Approach this day with awareness of who is Boss!"
Monday, January 25, 2016
Thursday, January 14, 2016
Left You Hanging
As the title reveals, I feel like I've left you all hanging. Here it is the middle of January and I've barely posted anything in the last month. That should tell you that things have been a bit nuts in the Hinton Household. Busy and yet, lacking in content to share with you all.
So yeah, we had a very busy few weeks around the holidays. Though, it was amazinggggg to not have anything on our schedule (for the most part). Meaning, Elena was home from school, home from the Jackson Center, only had a few therapies over break and we were able to breathe for the first time since this summer. Not only that, but we had Chad home with us too practically the whole month of December, so it was wonderful to spend time all together as a family without the typical chaos of our constant running. We stayed put for both Christmas and New Years, which also helped. Not having to run to 10 Christmases makes the holiday actually feel like it should, time spent with family, relaxing and remembering what we are celebrating.
In January, we always hit the ground running. Elena returned to school and the JC. Chad just returned from a tortuously long annual sales conference (and yes, we survived, barely). And here we are, mid-January. Honestly, not much to report though.
Elena has been a bit off her sorts in the last couple weeks. So much so that it warranted a very scary trip to the ER on Sunday (just as Chad was getting on a plane, thank you very much). They found nothing wrong, which was both comforting and frustrating but she isn't 100% herself yet. So yeah. Calvin is crazy energy kid. Like, how is it that a human can have that much energy? If only I could have a sliver of that! Though, he's been such a trooper. We lost our Wednesday babysitter (while Elena is run to therapy and the JC) this month to a full-time teaching position, so I've had to drag him with me to three-hour afternoons in Mooresville, which is a bit tricky in January. We had a lead on a new sitter, but that fell through and now I'm in a bind so if you know anyone...... Otherwise, the poor kid will spend every Wednesday, napless in a waiting room for three hours with occasional trips to the Mooresville Meijer. We're both not looking forward to that.
See, not much to report. Maybe in the next couple weeks I'll have a spurt of energy and actually something meaningful to share with you all. Sorry I've left you hanging AND faked you out with this boring post. If you need me in the meantime, I'll be looking for a babysitter and some inspiration! :)
I'll at least leave you with some cute pictures of the kids:
So yeah, we had a very busy few weeks around the holidays. Though, it was amazinggggg to not have anything on our schedule (for the most part). Meaning, Elena was home from school, home from the Jackson Center, only had a few therapies over break and we were able to breathe for the first time since this summer. Not only that, but we had Chad home with us too practically the whole month of December, so it was wonderful to spend time all together as a family without the typical chaos of our constant running. We stayed put for both Christmas and New Years, which also helped. Not having to run to 10 Christmases makes the holiday actually feel like it should, time spent with family, relaxing and remembering what we are celebrating.
In January, we always hit the ground running. Elena returned to school and the JC. Chad just returned from a tortuously long annual sales conference (and yes, we survived, barely). And here we are, mid-January. Honestly, not much to report though.
Elena has been a bit off her sorts in the last couple weeks. So much so that it warranted a very scary trip to the ER on Sunday (just as Chad was getting on a plane, thank you very much). They found nothing wrong, which was both comforting and frustrating but she isn't 100% herself yet. So yeah. Calvin is crazy energy kid. Like, how is it that a human can have that much energy? If only I could have a sliver of that! Though, he's been such a trooper. We lost our Wednesday babysitter (while Elena is run to therapy and the JC) this month to a full-time teaching position, so I've had to drag him with me to three-hour afternoons in Mooresville, which is a bit tricky in January. We had a lead on a new sitter, but that fell through and now I'm in a bind so if you know anyone...... Otherwise, the poor kid will spend every Wednesday, napless in a waiting room for three hours with occasional trips to the Mooresville Meijer. We're both not looking forward to that.
See, not much to report. Maybe in the next couple weeks I'll have a spurt of energy and actually something meaningful to share with you all. Sorry I've left you hanging AND faked you out with this boring post. If you need me in the meantime, I'll be looking for a babysitter and some inspiration! :)
I'll at least leave you with some cute pictures of the kids:
Elena working with her PT, looking SO big.
We survived without you, Chad!
Breakfast
Lights out
Calvin has discovered how to torture Pete and he's doing great at it!
Friday, January 1, 2016
It's a New Year
Goodbye 2015. Maybe I should say good riddance?
2015 was not the greatest year. I'm pretty excited, actually, to bid it goodbye and look forward to the possibilities of a new year. 2015 felt like an entire year of tough things happening to what seemed like everyone I love. It has been a year of doling out encouragement to people around the clock. The prayers lists have been long. The heaviness of their pain has weighed on me. I'm ready for a new year full of hope, happiness and minimal crises.
Looking back, we have most definitely had bright spots and loads of blessings. There ALWAYS are, but 2015 ranks up there as being a toughie. So today, my prayer for all those on my prayer list is for hope to outweigh the hurt this year, confidence to outweigh the fear, and for faiths to be strengthened and renewed.
Our family looks to 2016 encouraged that it WILL be a better year, full of blessings and love.
Happy New Year!
2015 was not the greatest year. I'm pretty excited, actually, to bid it goodbye and look forward to the possibilities of a new year. 2015 felt like an entire year of tough things happening to what seemed like everyone I love. It has been a year of doling out encouragement to people around the clock. The prayers lists have been long. The heaviness of their pain has weighed on me. I'm ready for a new year full of hope, happiness and minimal crises.
Looking back, we have most definitely had bright spots and loads of blessings. There ALWAYS are, but 2015 ranks up there as being a toughie. So today, my prayer for all those on my prayer list is for hope to outweigh the hurt this year, confidence to outweigh the fear, and for faiths to be strengthened and renewed.
Our family looks to 2016 encouraged that it WILL be a better year, full of blessings and love.
Happy New Year!
Monday, December 21, 2015
Goodbye Nana
Chad and I had been married only six months. He had gone down to neighborhood pub with a friend to grab dinner and a beer. I was sitting at the table in our condo downtown eating dinner when she called. Her voice was calm but immediately I knew something was wrong. It was Chad's Mom, Sharlene, and she had just been diagnosed with Stage 4 Metastatic Breast Cancer.
The next few days and weeks were frantic. Chad spent hours on the phone with cancer organizations getting information, the IU Simon Cancer Center, Moffitt Cancer Center in Tampa near where his Mom lived, friends who were doctors, anyone and everyone who could give us any hope. It was incredibly dire, doctors had suggested she go home and spend time with family, their best guess was about six months left. But they didn't know Sharlene.
When doctors gave her that diagnosis, they had no idea the fight, the drive, the courage that Sharlene had. She was young, 55, vibrant, full of life. They didn't know that she would spend the next nearly six years defying the odds, enduring weekly treatments for the sake of living. Moffitt Cancer Center provided her with the life prolonging drugs, but she had all the fight. She endured an unfathomable amount of pain and sickness, but she NEVER complained. She carried on, battling the disease and soaking up as much life as she could. As result, we made six years of memories together. She was able to meet both her grandbabies, watching them grow. She spent time with the love of her life, Keith, her friends and family. Precious time.
About a year ago, her health turned and we decided it was best to bring her to Indiana where Chad could better care for her. He also made the excruciating decision to end her treatments. We barely expected her to live a couple weeks once up here, but again, she defied the odds. Her health rebounded and we spent a precious 11 months with her. Though moving her was an incredibly difficult decision, looking back I know God was subtly letting us know time was running out and having her here allowed us to spend so much more time with her. We shared holidays, birthdays, sunny Saturdays and quiet evenings together. All moments and memories we'll cherish forever.
In late September, Chad arranged for one last farewell trip to Florida. It was a beautiful gift that he was able to give her. She spent time with precious friends, Keith, her beloved Scooter and Pretty (her dog and cat) and see the ocean one last time. It was God's perfect timing because soon after her return we started noticing a decline in her energy and mobility. At Thanksgiving we noticed a few odd symptoms, shared them with her hospice nurse who confirmed that the cancer had again invaded her liver. We were told things would move quickly. Chad and I agreed we wanted to bring her home with us.
Things did happen so quickly, much more so than we anticipated. It sounds silly, because we knew for so long this is how it would eventually end, but it totally caught us off guard. In a matter of just a few days, she went from telling me she wanted me to cook her vegetables for dinner when she moved in with us, to being non-responsive in a hospital bed in our home.
Amidst all the horror of death, I think about how beautiful it was watching Chad care for his Mom. I've watched him lovingly, patiently care for her for the last year, but this was different. The love between them was palpable, even in her unresponsive state. Every time Chad would tell her he loved her, she would muster every ounce of strength just to move her lips, mouthing "I love you". Though both fiercely independent, they both desperately needed each other in those final days. It was both heartbreaking and heart-warming. There was so much love in our house the last few days. I can honestly say Sharlene passed peacefully surrounded by it.
In the days following, we've poured over old photographs, mementos and stories of Sharlene. Looking at things from Chad's childhood, I feel like I've connected with her in a way I never had before, as a Mother. You could feel the love and pride in every saved art project, English essay, Little League trophy and Honor Roll certificate. I'm so thankful for the way she helped shape Chad into the person he is. He is an incredible husband and father, no doubt because of her.
We cry because we miss her but rejoice because her suffering is no more. We cannot even fathom the joy of spending eternity with our Father, but know she is loving singing His praises. Our goodbyes are only temporary and we look forward to the day when we see her again! We found comfort from my daily devotional on December 15th, the day Sharlene breathed her first breath in heaven, which read this:
Many have asked about services for Sharlene. She made it clear she didn't want any fuss over her, no funeral! Instead, she just wanted everyone to celebrate her life. We'll be doing this privately with just our family. Chad and Keith will then take her ashes back to one of her favorite spots, the picturesque sandbar near her home in Florida where she had so many wonderful times, chair in the water, toes in the sand. If you would like to honor Sharlene's memory, you can donate to the Moffitt Cancer Center Foundation on her behalf. Moffitt provided her with outstanding care and no doubt precious time. Your donation will help breast cancer research and care. You can donate here and click "donate" or mail your donation to (make sure to designate in memory of Sharlene Hinton on your donation):
We are so grateful for all the heartfelt messages of love and support of our family and memories of Sharlene. We celebrate her life!
The next few days and weeks were frantic. Chad spent hours on the phone with cancer organizations getting information, the IU Simon Cancer Center, Moffitt Cancer Center in Tampa near where his Mom lived, friends who were doctors, anyone and everyone who could give us any hope. It was incredibly dire, doctors had suggested she go home and spend time with family, their best guess was about six months left. But they didn't know Sharlene.
When doctors gave her that diagnosis, they had no idea the fight, the drive, the courage that Sharlene had. She was young, 55, vibrant, full of life. They didn't know that she would spend the next nearly six years defying the odds, enduring weekly treatments for the sake of living. Moffitt Cancer Center provided her with the life prolonging drugs, but she had all the fight. She endured an unfathomable amount of pain and sickness, but she NEVER complained. She carried on, battling the disease and soaking up as much life as she could. As result, we made six years of memories together. She was able to meet both her grandbabies, watching them grow. She spent time with the love of her life, Keith, her friends and family. Precious time.
About a year ago, her health turned and we decided it was best to bring her to Indiana where Chad could better care for her. He also made the excruciating decision to end her treatments. We barely expected her to live a couple weeks once up here, but again, she defied the odds. Her health rebounded and we spent a precious 11 months with her. Though moving her was an incredibly difficult decision, looking back I know God was subtly letting us know time was running out and having her here allowed us to spend so much more time with her. We shared holidays, birthdays, sunny Saturdays and quiet evenings together. All moments and memories we'll cherish forever.
In late September, Chad arranged for one last farewell trip to Florida. It was a beautiful gift that he was able to give her. She spent time with precious friends, Keith, her beloved Scooter and Pretty (her dog and cat) and see the ocean one last time. It was God's perfect timing because soon after her return we started noticing a decline in her energy and mobility. At Thanksgiving we noticed a few odd symptoms, shared them with her hospice nurse who confirmed that the cancer had again invaded her liver. We were told things would move quickly. Chad and I agreed we wanted to bring her home with us.
Things did happen so quickly, much more so than we anticipated. It sounds silly, because we knew for so long this is how it would eventually end, but it totally caught us off guard. In a matter of just a few days, she went from telling me she wanted me to cook her vegetables for dinner when she moved in with us, to being non-responsive in a hospital bed in our home.
Amidst all the horror of death, I think about how beautiful it was watching Chad care for his Mom. I've watched him lovingly, patiently care for her for the last year, but this was different. The love between them was palpable, even in her unresponsive state. Every time Chad would tell her he loved her, she would muster every ounce of strength just to move her lips, mouthing "I love you". Though both fiercely independent, they both desperately needed each other in those final days. It was both heartbreaking and heart-warming. There was so much love in our house the last few days. I can honestly say Sharlene passed peacefully surrounded by it.
In the days following, we've poured over old photographs, mementos and stories of Sharlene. Looking at things from Chad's childhood, I feel like I've connected with her in a way I never had before, as a Mother. You could feel the love and pride in every saved art project, English essay, Little League trophy and Honor Roll certificate. I'm so thankful for the way she helped shape Chad into the person he is. He is an incredible husband and father, no doubt because of her.
We cry because we miss her but rejoice because her suffering is no more. We cannot even fathom the joy of spending eternity with our Father, but know she is loving singing His praises. Our goodbyes are only temporary and we look forward to the day when we see her again! We found comfort from my daily devotional on December 15th, the day Sharlene breathed her first breath in heaven, which read this:
"Your longing for heaven is good because it is an extension of your yearning for me. The hope of heaven is meant to strengthen and encourage you, filling you with wondrous Joy. Many Christians have misunderstood this word hope, believing that it denotes wishful thinking. Nothing could be farther from the truth! As soon as I became your Savior, heaven became your ultimate destination. The phrase hope of heaven highlights the benefits you can enjoy even while remaining on earth. This hope keeps you spiritually alive during dark times of adversity; it brightens your path and heightens your awareness of My Presence. My desire is that you may overflow with hope by the power of the Holy Spirit."
Jesus Calling, Sarah Young
Many have asked about services for Sharlene. She made it clear she didn't want any fuss over her, no funeral! Instead, she just wanted everyone to celebrate her life. We'll be doing this privately with just our family. Chad and Keith will then take her ashes back to one of her favorite spots, the picturesque sandbar near her home in Florida where she had so many wonderful times, chair in the water, toes in the sand. If you would like to honor Sharlene's memory, you can donate to the Moffitt Cancer Center Foundation on her behalf. Moffitt provided her with outstanding care and no doubt precious time. Your donation will help breast cancer research and care. You can donate here and click "donate" or mail your donation to (make sure to designate in memory of Sharlene Hinton on your donation):
Moffitt Cancer Center Foundation
12902 Magnolia Dr.
MBC-FOUND
Tampa, FL 33612
We are so grateful for all the heartfelt messages of love and support of our family and memories of Sharlene. We celebrate her life!
Sharlene Leone Marquand Hinton
May 5, 1955 - December 15, 2015
"At Last" Mother/Son Dance at our wedding
August 2009
Nana & Laney May 2014
Sisters, Renee & Shar
August 2014
Nana & Cal
February 2015
Boat Days in Florida
Sandbar with friend Joanne
Cheers to you, Sharlene!
Monday, December 7, 2015
Looks Can Be Deceiving
We had some family pictures done this fall. I should clarify, not full family photos, but mostly of the kids. A certain member of our family who hates pictures, ahem Chad, showed up in his work suit (though an always prepared wife brought him clothes!) and didn't want to be in any pictures! Regardless, the pictures of the kids turned out beautifully!
Take a look...
Take a look...
And just to keep it real,
This is really what taking family pictures is like. Am I right, Moms? Sweaty, frazzled, singing, clapping hands, making bribes...NOT the angelic images that appear. **And no, I did not drop Cal here, we were trying to get a good picture of me with both kids and he laid down to get away from me so I threw up my hands in surrender, all the while holding our 30lb Elena. Ha!
Speaking of perfect images, Christmas can be a difficult time of comparison, portrayals of beautiful Christmas trees, children in matching pjs, and perfect togetherness. I try very hard not to portray our life any different than what it truly is. We are not perfect parents. We don't have perfect kids. Our house is often in shambles. I am often in shambles. Our life is far from perfect.
On Sunday, our minister was giving a sermon on this very fact. Something he said really stuck with me, that we often compare our private life with others' public lives. I mean how true is this??! Beneath the images of our perfectly posed kids, our lives really look like the photo above. But we think we are alone because we only see the outer shiny images of those around us. I have my own rule when I become tempted to compare my life to that of someone's I see on social media: those who portray their lives to be the MOST perfect and happy, are the ones I pray for the most. Because I sense that just beyond that ideal photo, is a hurt/insecurity that they feel the need to cover.
So, in an effort not to fool any of you....I can't even tell you how exhausted I was after all the effort it took to get even just a few shots of smiles. (Our photographer, Annie, FOR SURE thinks we are nuts!) This holiday season, instead of wishing my house was beautifully decorated for Christmas or that my life was somehow more perfect, I think I'll be happy being a sweaty, frazzled, on-the-verge of losing my mind, kind of Mom. And you all can laugh when you receive our "Hinton Family Bliss" Christmas card! :)
Thursday, November 26, 2015
Thanksgiving
Each year, America dedicates a whole day to being grateful and celebrating Thanksgiving. Though, it mostly feels like we have started to skip this day and move straight to Christmas! I have always appreciated Thanksgiving more so than Christmas because there's much less fanfare, less distraction and the simplicity of it makes it easy to remember its purpose. Giving Thanks.
This month in my daily devotional, the theme has been focusing on being grateful, even in the midst of a storm. Having this thankful heart, opens your heart to bigger possibilities and opportunities for beautiful things to happen. Going through a difficult circumstance SHOULD make you appreciate life in all it's fragility. We all know life can literally change in a moment. That reality has gripped us for four years.
I have wayyyy too long a list for me to share with you everything I am grateful for. And I do my very best to thank God each day for all the blessings. I don't know that my heart could ever THANK God for what we all have endured for Elena, but I for sure am able to THANK Him for the innumerable amount of wonderful things that have happened as a result. Our home in a wonderful community. Elena's school. Our church. Our new friends. Our changed hearts. Our scars that have strengthened us. Our beautiful girl who is alive!
This Thanksgiving Day, I want to encourage you all to, despite your present circumstances, take a second to absorb the beauty that is your life and be thankful. My devotion this morning said "In our broken world, blessings and sorrows intermingle freely". How true this is. Today, don't let our sorrows and difficulties render us bitter. Let's open our heart and be thankful.
When I was in my darkest place of grief after Elena's injury, when everything was dark and impossible, I always remember there being the tiniest prick of light. I held onto that for dear life. Now I know that was the hope God had promised to never leave me and to get me through that impossible storm. The light surrounds our family now, no longer just a prick. It's our shining light, and it comes through Elena. Our family photographer took this picture of Elena about a month ago. It is perfection. The light that day, only shown on Elena and only for a brief moment.
This month in my daily devotional, the theme has been focusing on being grateful, even in the midst of a storm. Having this thankful heart, opens your heart to bigger possibilities and opportunities for beautiful things to happen. Going through a difficult circumstance SHOULD make you appreciate life in all it's fragility. We all know life can literally change in a moment. That reality has gripped us for four years.
I have wayyyy too long a list for me to share with you everything I am grateful for. And I do my very best to thank God each day for all the blessings. I don't know that my heart could ever THANK God for what we all have endured for Elena, but I for sure am able to THANK Him for the innumerable amount of wonderful things that have happened as a result. Our home in a wonderful community. Elena's school. Our church. Our new friends. Our changed hearts. Our scars that have strengthened us. Our beautiful girl who is alive!
This Thanksgiving Day, I want to encourage you all to, despite your present circumstances, take a second to absorb the beauty that is your life and be thankful. My devotion this morning said "In our broken world, blessings and sorrows intermingle freely". How true this is. Today, don't let our sorrows and difficulties render us bitter. Let's open our heart and be thankful.
When I was in my darkest place of grief after Elena's injury, when everything was dark and impossible, I always remember there being the tiniest prick of light. I held onto that for dear life. Now I know that was the hope God had promised to never leave me and to get me through that impossible storm. The light surrounds our family now, no longer just a prick. It's our shining light, and it comes through Elena. Our family photographer took this picture of Elena about a month ago. It is perfection. The light that day, only shown on Elena and only for a brief moment.
Wednesday, November 18, 2015
FAQ
I get questions allll the time about Elena. I know people have shared with me, that they sometimes feel uncomfortable asking us, but I want you to know I am always happy to answer questions. I've never had one that offended me (yet!). Before we were thrown into this world, I had no idea about any of this, so I definitely sympathize with the lack of understanding about our situation. But just a warning, you'll always get the straight up truth. I don't sugar coat things and I certainly don't paint rosy pictures. Chad and I are both very positive people, but we are both very realistic too. We have great hope for what Elena will achieve, but four years of this has given us the ability to have both hope and peace with whatever lies ahead.
1. Does Elena eat?
Ahh, this is the #1 question. And it's one of the more complex ones! When Elena's G-tube was placed before leaving Riley, we thought FOR SURE that it was a short-term thing, only lasting a few months. But then again, we had ZERO idea what we were really in for! Elena's swallowing ability was damaged by her injury (much like stroke patients sometimes) so we have spent four years helping her coordinate the complex physiological task of swallowing. This is one where we still have hope that she will eat someday, but are fully at peace if that isn't the case. Long story short, Elena CAN swallow and do-so somewhat coordinated, but the girl has ZERO interest in eating. That's where the frustration lies. She has proven many times over the years that she is capable of eating, but this is one of the very few areas she always fights us on. I have a few theories on this but until she can tell us, we won't know for sure.
2. Will Elena walk?
And this is definitely the #2 question we get. Short answer, we don't know. I believe she will to some extent. But years of me watching her in therapy has made me see just how HARD it is for her to move her little body. The effort is so great for her. So I think she will, but likely small distances (think, around the house) and not without exhausting effort. Again, hope here, but totally at peace with this.
3. What does Elena do all day?
We got this one a couple weeks ago and I almost laughed! Looking at her, I could see how one would wonder this. So here's our typical week:
Monday: School & Private Speech or PT a couple times a month at home
Tuesday: School with early pick up and straight to the Jackson Center for 3 hours of therapy
Wednesday: Outpatient OT then to the JC for 3 hours of therapy
Thursday: School & to Riley for outpatient Speech
Friday: School
And scattered in there are doctor appointments, wheelchair tune-ups and miscellaneous. This doesn't include daily stretching, feedings (30-45 minutes x 3 a day), time in her stander/gait trainer and her daily dance sessions to her music. She's not typical in that we don't do playdates, trips to the park, but you show me a four year old who is as busy as her!
4. Why doesn't Elena look at me or react to my voice?
As I've discussed before, Elena has a Cortical Vision Impairment. This means her eyes bring in information that her brain cannot process in the typical way. It's been described to me as looking through a kaleidoscope, lots of color and shape, but an inability to distinguish things easily. Her vision has improved with therapy, but like anyone with a sensory impairment, your other senses compensate for the damaged one. So Elena relies heavily on her hearing. As you can imagine, faces would be very complex to look at, they're all different and constantly changing expressions make them quite variable. So, she really only makes eye contact with familiar people. You'll see her try and kind of "scan" you but she struggles at times even with Chad and me. If she doesn't recognize your voice, you'll probably get less of a reaction too. I always think about me, if I was four and couldn't see well, hearing an unfamiliar voice would be a little scary. But don't let her fool you, this girl is a social butterfly. She LOVES people and the right people will bring out the hilarity in her. If you've ever been around Elena & Uncle Evan, you'll know that his burps and loud voice, will get her fired up!
5. What does Elena like?
MUSIC! Elena loves music though she has very specific taste that does not go outside of the Toddler Tunes/Disney genre. Though Taylor Swift is a favorite and she will allow a few other pop tunes as long as they're being sung by kids (Kidz Bop, what what?!). She loves her friends at the JC and School. She loves stories, bubbles, Mickey and Sofia, balloons and everything Miss Lisa (her OT) does. Most of all, she loves being included. She wants desperately to be part of the action, even when it's things she can't physically do. It's hard sometimes to tell because of her challenges, but I assure you she is a typical four year old and just wants to be treated like that. It can be hard to know what to say to someone who can't always respond, but we talk to her like she responds. If all else fails, just burp, toot, sneeze or cough....those will ALWAYS get a giggle out of her!
6. How do you know when Elena doesn't like something?
Oh, she let's you know. There's no mistaking it. These include waking up from naps, Mom talking to other people, bedtime, music she doesn't like and eating.
7. I don't know how you do it. How do you manage it all?
This one is the simplest. You just do. It's all we know. It's our child. Are our challenges different than most parents? Yes. Is it more complicated? Maybe. Life hands you difficult circumstances all the time. For me personally, my faith is the source of all my strength.
I'm sure there's lots more questions out there, but I'd say these are definitely the most asked. I can't speak for all parents of special needs kids but I would much rather you ask than stare or assume. Staring and assuming are the WORST! Maybe you'll find this helpful. The most important thing to remember when you're around Elena is that she's just a four year old kid. She 100% knows what's going on, even if she seems unresponsive. One of these days she'll be able to tell you your jokes are bad or that she hates playing "peekaboo"! Ha!
1. Does Elena eat?
Ahh, this is the #1 question. And it's one of the more complex ones! When Elena's G-tube was placed before leaving Riley, we thought FOR SURE that it was a short-term thing, only lasting a few months. But then again, we had ZERO idea what we were really in for! Elena's swallowing ability was damaged by her injury (much like stroke patients sometimes) so we have spent four years helping her coordinate the complex physiological task of swallowing. This is one where we still have hope that she will eat someday, but are fully at peace if that isn't the case. Long story short, Elena CAN swallow and do-so somewhat coordinated, but the girl has ZERO interest in eating. That's where the frustration lies. She has proven many times over the years that she is capable of eating, but this is one of the very few areas she always fights us on. I have a few theories on this but until she can tell us, we won't know for sure.
2. Will Elena walk?
And this is definitely the #2 question we get. Short answer, we don't know. I believe she will to some extent. But years of me watching her in therapy has made me see just how HARD it is for her to move her little body. The effort is so great for her. So I think she will, but likely small distances (think, around the house) and not without exhausting effort. Again, hope here, but totally at peace with this.
3. What does Elena do all day?
We got this one a couple weeks ago and I almost laughed! Looking at her, I could see how one would wonder this. So here's our typical week:
Monday: School & Private Speech or PT a couple times a month at home
Tuesday: School with early pick up and straight to the Jackson Center for 3 hours of therapy
Wednesday: Outpatient OT then to the JC for 3 hours of therapy
Thursday: School & to Riley for outpatient Speech
Friday: School
And scattered in there are doctor appointments, wheelchair tune-ups and miscellaneous. This doesn't include daily stretching, feedings (30-45 minutes x 3 a day), time in her stander/gait trainer and her daily dance sessions to her music. She's not typical in that we don't do playdates, trips to the park, but you show me a four year old who is as busy as her!
4. Why doesn't Elena look at me or react to my voice?
As I've discussed before, Elena has a Cortical Vision Impairment. This means her eyes bring in information that her brain cannot process in the typical way. It's been described to me as looking through a kaleidoscope, lots of color and shape, but an inability to distinguish things easily. Her vision has improved with therapy, but like anyone with a sensory impairment, your other senses compensate for the damaged one. So Elena relies heavily on her hearing. As you can imagine, faces would be very complex to look at, they're all different and constantly changing expressions make them quite variable. So, she really only makes eye contact with familiar people. You'll see her try and kind of "scan" you but she struggles at times even with Chad and me. If she doesn't recognize your voice, you'll probably get less of a reaction too. I always think about me, if I was four and couldn't see well, hearing an unfamiliar voice would be a little scary. But don't let her fool you, this girl is a social butterfly. She LOVES people and the right people will bring out the hilarity in her. If you've ever been around Elena & Uncle Evan, you'll know that his burps and loud voice, will get her fired up!
5. What does Elena like?
MUSIC! Elena loves music though she has very specific taste that does not go outside of the Toddler Tunes/Disney genre. Though Taylor Swift is a favorite and she will allow a few other pop tunes as long as they're being sung by kids (Kidz Bop, what what?!). She loves her friends at the JC and School. She loves stories, bubbles, Mickey and Sofia, balloons and everything Miss Lisa (her OT) does. Most of all, she loves being included. She wants desperately to be part of the action, even when it's things she can't physically do. It's hard sometimes to tell because of her challenges, but I assure you she is a typical four year old and just wants to be treated like that. It can be hard to know what to say to someone who can't always respond, but we talk to her like she responds. If all else fails, just burp, toot, sneeze or cough....those will ALWAYS get a giggle out of her!
6. How do you know when Elena doesn't like something?
Oh, she let's you know. There's no mistaking it. These include waking up from naps, Mom talking to other people, bedtime, music she doesn't like and eating.
7. I don't know how you do it. How do you manage it all?
This one is the simplest. You just do. It's all we know. It's our child. Are our challenges different than most parents? Yes. Is it more complicated? Maybe. Life hands you difficult circumstances all the time. For me personally, my faith is the source of all my strength.
I'm sure there's lots more questions out there, but I'd say these are definitely the most asked. I can't speak for all parents of special needs kids but I would much rather you ask than stare or assume. Staring and assuming are the WORST! Maybe you'll find this helpful. The most important thing to remember when you're around Elena is that she's just a four year old kid. She 100% knows what's going on, even if she seems unresponsive. One of these days she'll be able to tell you your jokes are bad or that she hates playing "peekaboo"! Ha!
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