For the Love of Ivey

I've watched this over and over. This is Lawson's story, but his story is a sibling's story. I've said for years that siblings are the heroes in these special stories. They live in a deep shadow most days of their childhood. They choose the shadow as adults. A shadow they love for a person who takes priority in time, space, and attention. They hear "hold on a minute" more times than fair. Siblings live in homes where the need for responsibility and priorities exceed their age. They do it with a quiet love that is unconditional. And, they are their siblings biggest cheerleaders and motivation. They show up. Siblings have an understanding of Life, each breath being a gift. Sacred and cherished. As Lawson said, which broke my heart, a Life he didn't know if he would see after he walked out a door some days. Siblings witness the fragility of Life. It is not my place to try and tell Knox and Walker's journey with Ivey. I can only tell this j...

Siblings of kiddos with disabilities are amazing humans walking amongst us. They live a life, most often, in the shadows of their sibling who simply needs "more". More time. More direct attention. More of more. We have now come to a fork in our road. Our boys are young men, and, our daughter is a young lady. I'll be honest, I was uncertain what life would look like once the boys left this home, once they had their own time, in their own personal sunshine. We found out quickly once Knox left for college his freshman year what that would look like. And then, when Walker left, we knew what life would feel like in their absence. There was too much space. Ivey felt it. We get many compliments about the relationship the boys and Ivey have with one another. Hints here and there that, maybe, Matt and I had some secret recipe to parenting a household with a child that is very medically complex and a very complex communicator. This is what I can tell you - there is no re...

When Ivey was a baby, I literally had drawers and spaces in her closet labeled, everything had a space, a place.  One special friend loved showing off Ivey's closet to newbies coming by for a visit. This level of organization mystified my friend. Secretly, I wanted to go back to haphazardness.  Justifying why I did this is simple.  At the time, I had friends helping me with my laundry, as were my mom and some night nurses.  With so many people, I found it more efficient, for all of us, to label everything.  No one had to search or guess where things belonged.   This approach to find order has only amplified with time. I have come to accept that being Ivey's mom has brought out a controlling aspect in my personality. For the record, I have always found peace in order and organization.  It could be described as controlling, maybe.  Ivey ramped up my need for order. On her hard days, or in times leading up to what I know will be hard, my need fo...

It's 2 am and I am up replaying one particular event of the day. It's one of those things that my mind holds tight, edging itself in my mind in a way that most people don't give a second thought.  But in Ivey's world,  small events can be a reminder and rather symbolic of just how overlooked individuals with disabilities are in this able-bodied world.  Even in this tumultuous time of political correctness, the world of disabilities is still not part of the conversation. So here I am up at 2 am replaying today being grateful for a moment and opportunity to meet a stranger in a parking lot. I am reminded that education, means, and even faithfulness can never replace the kindness of strangers.  And, my girl has angels all around watching her.   Over the years I have often found peace in what I have called "God Moments". Those moments that could be meaningless, yet, they happen at just the precise moment, in just the perfect way. I can look back at slivers o...

Last night I got my girl bathed and dressed for bed.  Our usual nightly routine.  Then we began our other routine in prep for the morning hustle to get out the door for a 6 am arrival time at Day Surgery.  The routine is necessary.  We discuss what will happen to her once her surgery begins.  Who will be with her.  Possible things she might feel and hear.  I explain that they may not know what she is requesting through her attempts to sign or her sounds as she comes out of  anesthesia   and that she may not know where she is, but mom and dad will be close by, just waiting to get to her.  I reassure her that even though she will not know the people she is with during surgery, they care for her deeply and have her best interest at heart.  They will be as gentle as possible. And as always, this is the point where I cry.  I apologize to her for making decisions on her behalf, all based on the good intentions of doing what is b...

The final synopsis.  The dogs were loud.  She didn't even want to talk about the cats.  The snake.  That snake was her favorite.  

Reminder:  Getting lost in the monotony of feeding tubes, suction machines and medications has taken a swipe at me.  Juggling education needs verses medical needs, finding a somewhat balance has zapped some energy.  Feeling pulled from every imaginable direction, just flat-out overwhelmed some days.  But, I need to do a better job of remembering.  The simplicity of happiness.  Joy in an unplanned moment.  The now.  The little things. Saturday in Target I had a little angel remind me.  As Ivey and I were weaving through the racks looking for her a new pair of footless legging, a woman walked past us.  She stopped.  Looked at Ivey.  Took two steps.  Came back to us.  She looked down at Ivey and said hello.  Then put her hand on my arm and asked if it was okay for her to  ask 'what's wrong with my daughter.'  My trained reflex said, "There's isn't a thing wrong with her, but she does have some medical ...

For someone who is blind and has hearing loss (deafblind), her feet are just as important as her hands.  The girl is the ultimate Type A personality, something I think she inherited from me and her dad. 

Sleep:   A condition of body and mind such as that which typically recurs for several hours every night, in which the nervous system is relatively inactive, the eyes closed, the postural muscles relaxed, and consciousness practically suspended. ( Websters) Sleep Patterns for a Typical Sleeper: I n the normal adult there are two main stages of sleep that alternate at about 90-minute intervals. Rapid eye movement (REM) sleep can be roughly described as a period when the brain is active and the body is paralyzed (except for eye movements, middle ear ossicles, and respiration). In non-rapid eye movement (nonREM or NREM) sleep , the brain is less active but the body can move. Non-REM sleep is composed of four stages that are differentiated on the basis of EEG characteristics. When normal individuals first fall asleep, they enter Stage 1 (sleep drowsiness) and then progress through Stages 2, 3, and 4 of NREM sleep. Stages 3 and 4 (deep sleep) are often called slow wave sleep o...

I have said this before and here I sit saying it again, the laundry room of Scottish Rite is the most beautiful ugly place I have ever been. I think it may be the place that grounds me even more than Ivey. The laundry room is the equalizer of all equalizers. No amount of money, race, or social status exists there. It's just parents trying to get to the next day. Some praying there will be a next day. I have met some of the most beautiful people there in the laundry room. In the brief time it takes to wash and dry a small load of laundry a friendship is formed. I think the bond is already there, we just have to meet for the first time. We rarely get past first names, yet, we walk away knowing the dark scared corners of our hearts and minds. The Beautiful Uglies. We move a strangers wet laundry to the dryer to make room for our own clothes to wash. We exchange the superficial reasons why we are washing laundry together. Then we dive in without noticing. We talk abo...

Quick Update: Ivey had an appointment with her surgeon today - that was great!  Her upper jaw has moved forward enough that no more turns of the distractors are needed!  This was sooner than planned. From here the distractors will stay in place and she will heal for the next 6 weeks.  Let's hope that this will allow pain to subside and swelling.  Most importantly, let's hope for a little sleep, something that is a mute point as of now. At the end of the 6 weeks, Ivey will return for another surgery to remove the distractors and plates. The surgery has allowed space for her breathing to improve.  Still there is a lot of swelling that gets in her way, let's hope that improves too.  In the meantime, I leave you with this, our sweet girl when she does sleep - with distractors, plates and swelling... if the stress of this doesn't kill us, her snoring will. But it is the sweetest nerve wracking sound I've ever listened to, even from across the house. Enjo...

Ivey has been home one week today.  I wonder how many times I have said that? I was asked in the hospital just how many surgeries she has had, how many hospital stays are in her past.  I don't know.  It is a number I have never cared to keep up with.  As important as each surgery has been or day, night, week or month has been at Scottish Rite, that number is irrelevant.  It's too many.  Some things are better off forgotten.  Each has left a scar on us and in our hearts.  Scars that  will never really fade.  These scars have both physically and mentally altered us.  These scars remind me of my weaknesses, and Ivey's, and they are proof of our strength.  They define part of us, but they are not all of us.  Rather, I like to think of all the days she has lived and smiled and the number of years that she spends with us on this Earth, despite all the other.  But while this wound is healing, before the scar, while all is ...

Ivey seems to have made the necessary turn over the past 24 hours.  She is managing pain without the morphine, which is necessary for coming home.  There is still a regimen of pain medication, but that can be monitored on the home front.  All of which means we are one step closer to coming home.  Pain has been Ivey's biggest obstacle. Ivey's swelling is down immensely, still swollen, but nothing comparable to the past week and bruising is fading. Seizures still hit periodically, but they tend to go hand-in-hand with pain.  Another thing that is normally monitored on the home front too. This afternoon her IV went and was removed.  She has been a pin cushion over the past week, with lines from every extremity at some point, so everyone was in agreement to go without an IV and switch all meds to her feeding tube.  She is up to full feeds, so IV fluids are not needed any longer. It is a noticeable that her upper jaw is moving forward.  With it...

I think most people walk around expecting to find someone who will, at some point, give them unconditional love.  Others look to their children or to their parents and expect unconditional love.  You know, being loved for who you are, just you, nothing more, nothing less.  No stipulations. I also think that we purposely gravitate toward others who we feel can love us unconditionally, despite all of our faults and flaws.  Or at least love us in the terms that we assume loving unconditionally means.  I am not so sure I want to be loved unconditionally.  Most often unconditional love is described by the flaws, the things we do that make life harder for the other person. It is our pros out weighing our cons. We will love someone unconditionally and somewhat pretend the other does not exist or that we can merely overlook the things that are not so lovable.  Rarely does unconditional love describe the joy we bring into someone's life.  Joy does not ma...

TGIF! It’s been a bumpy road the past couple of days.  Ivey has been more playful during the days.  The evenings and nights have been long and painful.  Managing Ivey's pain at night is difficult.  She is not tolerating her continual night feed.  She is not sleeping and the little spurts that she does are very restless.  Even after Lortab, morphine and Motrin, last night she was up and agitated until she finally exhausted herself around 3 am.  They were in at 4:30 a for labs - rest over.  She is also having little episodes that seem like jolts of sharp pain maybe hitting her.  Seizures are spiking in every so often. This afternoon Ivey was moved from PICU over to the Floor.  She will be here through Monday for sure.  Coming home after Monday will depend on how well she does over the weekend.   She is still very swollen and bruised.  Wednesday night the swelling peaked, hopefully swelling will continued to decre...

Good morning.  Thought I would give you all an update on Ms. Ivey-Lou. I don’t really remember where I left off yesterday, so I’ll pick up somewhere in the middle. Ivey did have a relatively good day yesterday.  She did want to play “wheels on the bus” , “its-bitsy” and “row row row your boat”.  Not with much gusto, but would wiggle her hands.  She signed “Ivey’s momma” a lot, which is a good sign.  And she BEAT the switch to her dog Scout to death, which was a great show of her sassy normal attitude.  She also put her thumb to her mouth and then moved it and looks so very sad.  If I could give her one thing, it would be her thumb. She did have seizures last night, again.  Ativan was given. During the night she continued with her Lortab and alternated with morphine.  Apparently she is super sensitive to the morphine during this stay, so her heart rate and respiration dipped really low again.  So we will have to watch her ...