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Where does he fit in?

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Gage is different. I know this. Oh, how I know this. Just Gage being involved in ordinary extra activities is impossible without The Parenting Style Otherwise Known as Gage Management, so I know he is different. On so many levels.

Sometimes Gage doesn’t seem different at all. When we are at home, and stress and noise are at a minimum things are peachy. When he is around a large group of people, particularly other kids around his age, things can easily escalate and get out of hand if someone (us) isn’t there to manage the situation. Sure, school can contain him, but I don’t think they can necessarily manage him the way one of us parents can.

This is somewhat stressful in our (his) day-to-day life. His behavior and the management of him impacts all areas of our life; school, scouts, sports and church.

Before the suicide talk, when Gage was just normal wild and not could-possibly-accidentally-kill-myself-while-threatening-wanting-to-die wild, there weren’t any parents willing to take responsibility for him at a scouting camp. It wouldn’t have been all week – just a couple of days (day camp only, not overnight, so no meds), then Julian would have been able to take over Gage and their son/s. He has a couple of friends he does fine with one-on-one, but for large, especially unstructured events – Gage? Well, not a good idea.

Gage is in the special ed rotation at school. He is “mainstreamed” for lack of a better word, in a regular classroom, but supported by the special ed department (heavily). They go in the classroom or pull him out for one-on-one attention – which he does much better with, by the way. Gage is somewhere in the middle of the two environments – needing both equally, to hopefully, be successful one day.

It is hard to be in both environments actually. Because just when you think he appears “normal” he will do something that reminds you that he is also “different” in a significant way. I’ve known that he can appear to be in both worlds for a very long time. Probably since he was two, and playing with kids, but doing it from the ground because he was unable to walk. I’ve accepted this part of parenting Gage, but it doesn’t make it easier, as people say.

Currently, he struggles in P.E. at school. We have no idea why. Last year, he was generally fine with P.E. but something has changed and now he isn’t and he is doing everything in his power to disrupt P.E. time, which is only a couple of times a week. We need to get some feedback from the school about the best approach, but I am sure it lies within some kind of parental management of the situation – even possibly one of us going to P.E. class to inspire, cajole, or threaten – whichever may be the case for the day.

Recently, we realized that if we want Gage in Sunday school at our church, one of us parents has to be in there. We were against one of us being there because A) It’s a small group (under 8 kids) and Gage can make it in a group that size, generally speaking and B) Because I already am teaching another class and C) A 45 minute period without one of us parents managing him would have been excellent for both him and us. But he and the teacher didn’t click, nor do I think that the lessons were particularly interesting to him (lots of arts and crafts, no physical activity like an active game/10 min on the playground and a lot of the lessons seemed with an international theme), so we pulled him out.

We didn’t take this decision lightly. Because Gage HATES all things church right now, we had to tell him that as a family, we’d decided to not go to Sunday school (except when I am teaching) because we felt it didn’t fit our family right now, but maybe later at some point, we would reengage with Sunday school. We also knew that Quinn would pay a price for it because she likes Sunday school – but we didn’t think that she could go and Gage not go, then it appears to him like he has won – to him being that he hated it we pulled him out. That is what Gage would see and that wouldn’t be good. Quinn is not happy with this family decision. Such is the life of a sibling of a difficult child.

When this all was going on a month or so ago I thought a lot about where Gage does fit in. And it’s not many places without the benefit of us making sure he fits in. And oh, how I struggled with a lot of sadness around this issue at church, because if he doesn’t fit in at our church, the last place you would feel your child would not feel welcome, where exactly does he or can he possibly ever fit in? Really. Where?

The issue of church and/or switching churches is a difficult one because we love the people in this church for surrounding us with God’s love during a time when we needed much surrounding. And in some ways, I feel that the people in this church deserve to see the ending to our story. They deserve to see Quinn get her transplant and they deserve to see Gage truly happy again. So, for now, we will worship as a family there, but not send the kids to Sunday school. That is enough right now.

I have no idea if throughout the rest of his childhood and adolescent years he will be able to manage himself (just where is that crystal ball when you need it?). Right now, it is not looking that way. Which also is at the root of a somewhat bottomless pit of fear inside me.

Will he ever fit in?

Thinking about S.

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Quinn’s BFF’s big sister S is having brain surgery on Thursday to remove a golf ball sized tumor. She fell Christmas eve while the family was on vacation and hit her head (she was wearing a helmet) during the course of treatment they found the tumor. It’s a very scary story that involved S getting air flighted to a children’s hospital and her parents and sister and brother having to drive a long way to get to her. I can’t imagine.

It looks very good that it is a benign tumor so we are all very hopeful. But I know first hand, that while hopeful means hopeful and all, they will still be sending their girl to the operating room for a delicate surgery.

They all could use some prayers, thoughts, good wishes and healing vibes. Especially S, who is a charmer of a girl with some serious wit!

We don’t have it bad at all.

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The tragedy at Virginia Tech has quickly removed any remnants of self pity I had for the experiences we’ve been through and will go through. Today, it is gone.

Early in the diagnosis of ARPKD I used to wonder if Gage and Quinn would live to make it to college. Now I wonder how safe will it be when they get there.

Prayers for peace and understanding to all.

Words of support.

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We’ve received many calls and emails over the last few days as I know our donor has and here is just one of many that brought us to tears…

Julia,

What wonderful news! What promise Gage now has through this gift–a gift for a little boy so loved in this world and in God’s world (a pity the two aren’t always the same). But in this miracle, Jody has brought so much more than life; she’s brought hope, often far more difficult to find than life.

For those of us at the margins who have watched, prayed, cried, and despaired with you, would you please let us know exactly–if such a thing exists for you–when the surgery is? I, for one, would like to be there through my prayers, asking God to protect Gage and Jody, to guide the hands of the surgeons, and to be present with you and Julian in those moments of fear and hope, joy and promise. How I rejoice with you that there is selfless love in Gage’s life! God’s presence made whole and undeniably real.

As you have often stated in your posts, the struggles aren’t over yet. There will be new ones, and old ones will continue. However, for this moment, at this time, imagine yourself deftly making those craft items, working with the PTA, attending to career and to Julia and Julian with more fervor and energy than you’ve experienced for years. That time is coming as surely as there will also be a miracle for Quinny. What joy we will have in this house tonight as we give thanks to God for moving so visibly in Gage’s life.

God’s peace and presence,
Ondina

Kids.

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This note is from a friend whose kids S & D wanted to say special prayers for Gage. And yes, any prayers, any thoughts of healing, from any source help. But this one is extra sweet; from kids to kid. And S cleared out her closet of tutus when she learned about Quinn’s ballet class and shipped them down south. And I promise S, Quinn will thank you properly with a written letter…and hopefully that will be soon!

On another note, you can add some Jewish prayers to those being said for Gage.  My kids read the blog and decided to mention him during the part of the service that comes when the Torah is read and the congregation is asked for names of those they want to acknowledge with a special prayer for healing.
Any source……….

Quietly (well maybe not quietly) changing inside.

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Dear Potential Live Donors…Four of You and More in the Wings,

I cannot express to you how much it means to me that you would even consider being a donor and go through the personal invasion of privacy questionnaire let alone be willing to go through testing and surgery to donate an organ that has been perfectly happy in your body.

I sense that you have an inkling of what it means because you see Gage living a life and you know what he means to me. You know that he is part of my soul and part of the soul of this family and life without him would be unbearable. To know that you have the chance to give him a "normal" life with a new kidney is so overwhelming. I can’t imagine what it will feel like to know that a friend, that I likely met through God’s will at a small church we would come to attend after years of passing by it on the street, or feeling a strong connection after meeting through a mutual friend, or even meeting your wife early in my career, would help my son live. And the crazy thing about it is that had not all of the events in all of our lives met up with God’s grace, knowledge and intervention this would not be a possibility. It’s a powerful gift you are offering and a humbling one. Even before transplant occurs the power of the offer is changing me. Profoundly. Spiritually.

See…with the helplessness that has come with the knowledge that as parents we are unable to donate has come a wavering in my faith. What has happened during your willingness to donate a kidney is the renewal of my hope. I have hope again. For the first time in weeks there’s a stronger belief in my heart that Gage will survive and live the life he deserves. 

I thank you and I love you. Even before this incredible offer. But I hope you already knew that.

Julia

Proud, tired mom to a wild boy who has not let dialysis stop him one tiny little bit.