|From high above the clouds this summer as I flew.|
Our family is doing very well, and yet we are in a period of grief. It hits at unexpected moments and is so raw, so overwhelming, and yet so necessary to move to a better place. You see, Angie's recent experience a couple of months ago in attempting job training for a home health aide position was a huge awakening for her, and a scary one. We have had multiple tearful conversations about the fact that because her environment at home had been customized specifically for Fetal Alcohol Spectrum Disorder (FASD) learning, and because she had been intentionally protected from the possible negative experiences she would have without the right supports in place, she really had no idea that she really and truly did have FASD. She had been able to gloss over the concerns we had given voice to through the years, but in her first attempt out in the world by herself, she saw clearly that she really does have an adapted environment at home which has helped her thrive. She also saw very clearly, and affirmed that with the other kids, that the real world does not adapt, and will be very, very challenging for her, Olesya, and Kenny.
This has knocked her for a loop, understandably so, and many an hour has been spent in encouraging conversation, sharing hard truths and working her way out of denial and into acceptance. She is incredibly courageous and honest in a way few are, and I am ever more proud of her despite how emotionally draining all of this is for all of us.
Kenny, too, has cried multiple times recently over his future. With graduation looming this academic year, both are feeling great uncertainty about what is next, how they can find a way to support themselves and continue to move forward into the adult world that awaits them, despite the fact that they are each a few years behind developmentally as those with FASD and institutionalization in their background usually are.
What do you do when, as Kenny pointed out, there are days you can't even address an envelope correctly? What do you do for work when you are far too bright for sheltered workshops, and yet employers are not set up to accommodate your special needs? We are brainstorming ideas daily, and are going to do everything in our power to find real, meaningful work for the kids. In truth, there is SO much to work with in each of them! But finding the right setting is going to be very, very challenging...and we may have to create it ourselves. The liquor store is good for very part-time work, but there are far too many things there that they can not do...run the complex cash register system quickly with a large number of distractions, etc. It is sort of beyond the capacity of any of the three of them.
We also had an affirmation about the future this weekend as someone from our past we knew very well and cared for deeply popped up via an unexpected connection. This person we now know has FASD, is now almost 40 years old (we knew him when he was 17-19) and has struggled since day one to hold a job, was homeless for a period of time, and has lived into virtually every statistic for adults with FASD that we have heard. It is scarily accurate, all that we have researched and been told, and we are all very aware that we can not afford to pretend that lifelong supports of some nature are not necessary. Others may never see it, may never understand, may call us helicopter parents for the rest of our lives because our kids "look" normal to them...but we all know the truth, and it isn't something to play around with.
"Mom, I am afraid because my mind always first goes to thinking that those things will never happen to me...that I would never be so stupid and steal or do drugs. And yet, I know it isn't really about that." she said.
"Ang, you are right, it is about the fact that your brain may not make the best decisions on any given day. For you, it may be about rushing into a relationship that is inappropriate for you, or giving up and not controlling your own life because it is too hard. It may be that you struggle with making a good financial decision or get confused over a contract yet think you understand it and don't ask for help, it may have nothing at all to do with making a bad moral decision, but about a bad decision or unsafe choice in any circumstance."
She got quiet, and then more tears..."I am most worried about my denial being so strong, when I KNOW and can totally see I have problems and my brain doesn't work the same as other people. I am scared I will let denial win sometimes because I did it for so long."
Quietly, we sat there, then I said, "I think you are failing to see something. You are just naming that you see how your brain jumps to denial, and it bothers you. Just three months ago you couldn't see that at all. Once you see things, you can't easily 'unsee' them, and so I think you may already have this part beat! You quickly caught yourself in the actual moment and didn't let denial set in...so how is it winning?? YOU won!"
Looking at me with red rimmed eyes brimming, trying so hard not to lose it, she said, "I don't know why I just can't stop crying these days. It is like I am always crying even when I don't expect it!"
"Oh sweetie, that is the way grief works, and you need to allow yourself this time to grieve." I said. "If you don't let yourself work through it fully, you will never be free of all of this, so this really is important work to do. You are grieving the life you thought you were going to have and moving toward acceptance of a different sort of life, not a bad life, just different. That's expected to feel that way."
Laughing through her tears, Angela shared, "I don't even get it! I have always wanted a life that wasn't boring and normal. Now it is definitely not going to be normal and all I want is normal! I am so messed up sometimes!!" and we both giggled over that.
And then, right there in that moment, I realized something and explained what I was thinking to her.
"Ang, you are absolutely right! You have NEVER wanted to be 'normal' and have a 'normal' life. You have always wanted to have an exciting, interesting, and different life! We ALL talk often about how normal is over-rated!" I was thinking to myself how Olesya's favorite saying has been that our family is "uniquely developed" and I am sure Angie thought about that, too.
I then went on, "Maybe this was God's way of ensuring that you, indeed, will have an nontraditional, interesting life! Think about it for a moment...if you had managed to handle that training, you would have probably gone on to become a CNA and maybe you would have settled in to that, and never done anything else. The truth is, you have a gift for relationship with the elderly, but you really don't get too excited about the physical care taking parts. Maybe FASD is really a gift to you to make certain you really DO have an interesting and unusual life, because the fact is, you really can't approach your life's work the same way as everyone else and may have to make your own way, perhaps with your siblings, maybe some on your own. I know one thing though, you have gifts galore and we are going to figure out how to use them!"
And then I hit on something that I could tell may make all the difference in the world when I said...
"I think you may be viewing this all wrong, and that is because you are going from the word 'normal' to the word 'abnormal' in your head. This isn't to make you feel good, it is exactly what you have desired since the day we first could speak to one another, and it is what I and many others see in you. Angie, why settle for 'normal' when you can have 'extraordinary'??"
I let that sit there, hanging in the air, and I literally watched her emotions shift as it reflected across her face. A few moments to sink in, and I then added, "You learn differently, very differently, but we have already proven you can learn...and learn a LOT and learn WELL. So this isn't about intellect, it is about being different and learning in an extraordinary way. You have literally gone from being at a preschool level in just about everything when you first arrived eight years ago to being late teens developmentally AND you have become fully fluent in English AND you have mastered all kinds of life skills AND you have regained Russian AND you have learned all about how to live in an emotionally healthy family AND you are going to graduate high school with a non-adapted diploma in almost every way. I would say you can learn a LOT with the right support in place, and you will need the right supports in place your entire life, but you already have them...you are set for an extraordinary life, and now we go chase it!!!"
As we were speaking, the tears slowly stopped, the cheeks dried, and a smile returned. There was something here that was speaking truth to her, even if she was struggling to hang on firmly to it. But she knows I never, ever do anything but play it straight with her and the rest of the kids, and if I can envision an extraordinarily different and wonderful life for her, maybe she can, too. That isn't denying the reality of how hard it might be, but she and the others have honestly already done more hard things than just about anyone I know.
It was in that look from her that I realized the power each and every one of us have to help someone see things anew, how our pet phrase in our family, "words mean things" really is true. And I also saw how others have done the same for me just when I needed it...
While I was traveling this long, emotionally difficult summer, I received the gift of someone else's reaching out, helping me hang on and see things anew. Spring had been so emotionally heavy laden around these issues, which are no doubt being exacerbated as graduation looms this year, and fear increases...which is not at all unreasonable for them. Just keeping things stable, loving, supportive, and encouraging has been a full time job for a very long time. I needed the anticipated break so very much, then things fell apart in all kinds of ways. Then, just when I least expected it, in the midst of my own pain and deep doubts about all kinds of things, I received a package of documents for my mom which Dominick quickly sent via FedEx as I needed them immediately to begin the process of handling her affairs.
In the box he slipped an envelope from a dear, dear old friend, Janet, because he had a sense I might need whatever was inside. He knows how very much I have appreciated the quiet reaching out Janet has done through the years, mailing me articles she knows will be of interest (they ALWAYS are, she just knows!), sending notes of encouragement, and more. Oh, how she has held me up through the years without realizing it! This time, she sent me something so precious, so needed in that moment, that tears instantly fell, and I have unfolded this piece of paper 25 or 30 times since receiving it to remind me we are still on solid ground, even when it feels shaky. I was reminded that all the heartache is for a purpose, and I saw our family anew through her eyes...something that right now I desperately needed to see. Here is what she sent me, and I will likely carry it in my heart forever, but also keep it near my desk where I can re-read it during those hard, hard days yet to come:
For those who don't know, this is sung to the tune of "Oh, Danny Boy". The lyrics are so incredibly moving to me, particularly this: "Let love be real, with no manipulation, no secret wish to harness or control; let us accept each other's incompleteness, and share the joy of learning to be whole."
Oh man, if that doesn't capture it for me...what it means to be family, or perhaps what it means to be THIS family, Team LaJoy, the Family That God Built.
You know what? I didn't even know how much I needed this, but it was perfect and a reminder of what was waiting for me at home after being gone so long. This beautiful, imperfect, loving, extraordinary, "uniquely developed" family of ours is doing everything we can to learn how to be whole. It isn't easy, it can be painful, and yet we are not running from anything. And funny, how in the middle of all the terribly difficult emotional work, the kind that splits some families wide open...we seem to draw ever nearer to one another. Only God helps with that.
So, here we are, and we are going to "Let love be real" in all possible ways. Frankly, I don't think we know how to do it any other way.