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 recipe. No secret sauce. None. What I did do - I watched others, listened. If there were ever a secret sauce, that would be it. Watch what others do. Watch your kids. Listen to your kiddos in the passing, when they play. Listen to their actions. Listen to passing strangers. Ignore the static. Find a way to make a disability a source of resilience and grit. Find your purpose in it all. The recipe is somewhere in layers of experiences that hit you like a train, and all unexpected. Maybe ask for opinions (not advice) and do what your gut tells you.
But, there are moments in time, they stay at my forebrain, just like these moments happened today. They have been pivotal to me in this crazy world of disabilities. Maybe, somehow, just maybe, helped to mold what little bit we could mold as parents.
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When Walker was very small, he came to me one day and asked in that sweet sad little boy voice, "Mommy, is Ivey more special than me?" I sat down on the floor in front of him and asked "Why do you think that?"
His tiny sad voice explained that I say Ivey is special more often than I say he is special.
Of course my instinct was to explain to my tiny human why he was misunderstanding what I was really saying. But - I held my "you're misunderstanding" words. He was little - his understanding of the word "special" was very linear.
We had a long tiny person conversation about "why" we say the word "special" when talking about Ivey. She has special needs. Special in her case meant different. Neither Walker or Ivey was more special to us, the word special was just a means to say she is different without hurting her feelings, but in the wake, his feelings were hurt. His heart hurt. What if he hadn't asked? ...... that tiny soul ran off like the world was lifted off his shoulders.......later that evening, we had that same conversation with Knox.
For the most part, with few exceptions, I stopped saying "Special Needs".
I call her diagnosis's by their names. Straight forward. No fluffy labels.
This one moment in time opened a door for the boys. They knew she was different, but more special, she was not. Their understanding of her being special was no longer linear. Today, the word "special" has many layers to the boys, but those are layers I don't understand. They are siblings. We are parents. We get to watch them. There is a recipe there that only exists between the boys and Ivey.
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After that incident, I had lots of doubts about parenting these radically different situations. Ivey, no matter what, always needed more. Time and attention have NEVER been equal, it can't be, never will be. Laws of physics apply. It made me aware of how often the boys heard (still hear), "hang-on", "in a second", "wait a minute", "give me a minute", "I'm hurrying (slow as a snail)", "It'll be another minute".... and on and on and on.
Always on the back burner.
The shadows.
Of course people would suggest scheduling time with the boys and not letting anything disrupt it. Seriously? Internally my eyes would roll. Tell that to her next seizure.
I have a friend that explained to her little kiddos that sometimes she had to love one more than the other, or at least it would feel that way. It was a brilliant analogy. I tweaked it a little here and there and used it with the boys.
Her example was skinned knees. If one fell and hurt her knee, she would have to tend to the sister, clean the wound, talk sweetly, give kisses, and essentially, give a little more love to the sister that day. BUT, she doesn't love the sister more than the brother, just sometimes, one is going to need more love. Other days, the brother may need more love. Over life, her children may need her, but she will never love one more than the other. They are both loved equally, but even as teens and adults, one may need a little more love for a moment.
The boys have heard that explanation of love their whole lives. They are loved. Equally. Sometimes one needs a little more - more. The more may feel like more love, but it's not, it's just more. Not more special, more love, or favoritism. Just more. And, the more is temporary. With Ivey the "more" hangs on longer, but never ever does it equate to more love (or more special).
And yes, we have had the conversation with Ivey. Somedays the boys need more too. She has to do her part. She's not a fan. She is the princess. But that's another story for another day. And.....they boys created that princess problem :)
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It's a heart wrenching memory, but our first experience with hatefulness and internal ugliness set me on a path to mold the boys to be her protectors at all costs. It was my first lesson in intolerance and the world we would face outside of our bubble. It was also my first lesson in fate, faith, and trust - in the humanness that also exists outside of our bubble.
It's the story of taking the boys out all by myself with Ivey, for the very fisrt time, after her trach. Ivey was maybe 18-months old, Knox maybe 4ish, and Walker 2 something. Did y'all just forget how close they are in age?
We were in Chic-Fil-A in Cartersville. I was so proud of myself. We made it that far in the car without needing to suction the trach. I managed to corral all three out of carseats. Ivey into a stroller with apnea monitor, suction machine, and feeding pump. We ordered and somehow got settled into a seat. It was a good day. We had gone somewhere alone, a little roadtrip heading to the outlet Mall, and made it to the first challenge.......
Then those mean elderly women sitting next to us made their presence known. One piped up loudly, expressing her disgust and dramatically telling the others how she could not possibly sit next to "that". "That" being my daughter. She went on.....she could not stomach her food looking at "that". So they moved to another table on the other side of the restaurant.
The boys were little - Oblivious. The people sitting around us all knew what just happened.
I grabbed all three and headed to the restroom. Went in a stall. Cried. The boys were upset because "Mommy is crying" and no idea why. I never knew people could be so cruel. A part of me hardened.
I opened the door to the stall, and there stood a girl close to my age. She said, "Hand me the baby. I will take the boys back to let them eat. You get situated and come out when you are ready. I heard them."
I handed all three kids to a stranger, Ivey included, and she walked out the door. A complete stranger.
Long story short, the stranger happened to have a daughter with significant disabilities. She wasn't with her that day. We are still friends to this day. This type of momma-ing has unspoken rules and bonds. This one moment in time had so many life lessons for us. So many.
That day we started working on our conversations about people who stare. They grew to conversations about out right cruel people. How to engage them. How to smile back. How to ask if they would like to meet Ivey. How to not be embarrassed of Ivey's physical differences. How to let me know if they felt uncomfortable. How to be her brothers and all it encompasses.
In all transparency, there's not a day we leave this house that Ivey isn't stared at. It's alot somedays. Alot. A whole lot. Did I say alot?
Over the years I have watched the boys lean into life outside of our walls. On good days, they took her to the world. On the days when it was all too much, they would read the room and I would watch them position themselves between Ivey and the starer. Other times, I have watched the boys basically circle around her like a shield. When all other teenagers were worried about trivial teenage angst, they carried her cross. Our conversations have always been about holding our head up and stand next to her with honor and pride. She is our gift. She has given them (us) the gift of GRIT all wrapped up with compassion and grace. (As I age, so loosing the two latter qualities... less compassion, less grace.)
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When Ivey was around 4 or 5 and in GSAP (program for kiddos with vision and hearing losses), GSAP held a weekend family event for families in Georgia. The boys were around 5 and 7, maybe a tad bit older. While Ivey was having fun in a GSAP activity and the boys in the magical SIBSHOP, parents met together to make connections and talk.
So much of the talk from parents was about their children and how the siblings wanted nothing to do with their sibling with disabilities. I took lots of mental notes that day. Several parents had expectations that siblings would do chores in context of sibling with disabilities not being able to. (Ex) Folding and putting away the siblings laundry, feeding the sibling, or giving breathing treatments. There is more but in gist, what I observed was several parents whose children held great resentment toward their sibling with disabilities. These were elementary and middle school aged kiddos. I panicked. Could they resent her?
What you will hear me say to the boys. They have heard it most of their lives. I've said it until I'm blue in the face...This is the core of our family.
"God gave us Ivey. He gave her to our family. All of us. She is our responsibility as a family."
God gave her to our family. God gave her to Matt and I as a daughter. With that, there lies responsibilities that we share with Ivey as her parents. Those parental responsibilities are NOT the boys responsibilities. God gave Ivey to Knox and Walker as a sister. God gave Knox and Walker to Ivey. Their responsibilities are those that only exist between siblings. The line is drawn there. No exceptions. As a family we take on the extras that come with Ivey. But the responsibilities are very defined.
Now the extras. Both boys have taken on responsibilities that far exceed the responsibilities of their ages. They can work a feeding pump. Use a suction machine. And God bless, they are seizure experts. They know a unique communication system. The list of extras goes on and on.
These things they learned over time and in their time. We taught them. They live with a feeding pump. They should know how to use it and why. It has never ever been their responsibility to know or maintain the feeding schedule. Overtime, if the pump went off, they on their own would go pull up a flush and unhook her. Today, if it's time for her to eat, they hook her up. Sometimes I ask, sometimes they just do it. But it has never been a chore or expectation. If she needed suctioning, they would go get the suction machine and suction her. In the heat of the moment with a seizure, they learned by watching, to go get the suction machine, run grab emergency meds. Today, if Ivey has a seizure, the boys run toward her as quickly as Matt and I do. Was it ever their responsibility? No. Overtime they became part of her team. They took on her "special" when they were ready. They took on their own unique roles. God gave her to all of us as a family. Over time, God has led them to where they need to be in her world. Part of that has been taking on more of her in their time and their way.
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There are many more moments that I feel set us on a certain parenting path. So many memories.
The secret sauce is a just that - a secret. I don't have the secret. Maybe the boys and Ivey do. I have a list of memories that seemed to be importanat and pivotal in their moment. As crazy and organized and regimented and militant as our home is some days, on top of the mass chaos, I think Ivey and the boys had space to be brothers and sister. Just brothers and a sister being siblings in their own unique way. As for parenting .....
I get the phone call, "Mom have y'all left yet? I'm out of class."
Me: "We are at the gas station."
"I'll meet you there".
Two brothers show up, at a gas station, for one more moment with her. Secret sauce.
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