When is enough enough?

A good friend called me recently and left me a message.  She verbalized a question that I ask myself almost every day.  It goes something like this:

When do I draw the line?  How do I know when enough is enough?  I have traveled all over the world to help my daughter.  I have spent hundreds of thousands of dollars.  I have dedicated so much time, energy, hope to my daughter’s recovery.  She is doing better but not as well as I’d like her to.  I’d like her to have more function, more independence, more freedom.  But we’ve done everything and her progress is not as significant as I’d like it to be.  Should I keep spending all my money and energy trying to help her? When is enough, enough?

I hear you sistah, I wonder the same thing, day after day after day!  The more money, time, effort I spend on Nathan’s rehabilitation, the more I wonder if it’s worth it? And when is enough enough?

I listed everything we’ve done the other day – we’ve done SO much.  We’ve spent every dollar we’ve had and haven’t had for the last 4 years on Nathan’s rehabilitation and health.  I’ve worn myself into absolute exhaustion.   And as a business woman I can’t help but do an ROI analysis – what do we have to show for all of this effort?

In terms of gross motor progress – not much.  Fine motor development – none.  Fortunately we HAVE seen tremendous cognitive gains so our efforts HAVE paid off in a very important way.

It’s impossible to measure a true ROI because in a situation like this – everything matters!  I would do it all over again so that Nathan could have the freedom that he displays using the Dynavox and being able to communicate with us.  I am grateful for every little thing he can do.  Most importantly, could it be that all of the therapies that we’ve done for him have contributed to his good health?  To the fact that his body structure is in decent shape?  That he has not been hospitalized in 4 years?  That he is a happy child who enjoys life?

Anyways, I HAVE come to some conclusions that I wanted to share with her.  Since we haven’t been able to speak on the phone and I’ve had similar conversations with a few moms, I thought I’d share some of these conclusions here:

*  I’ve decided that any therapies we do from here on after have to be SUSTAINABLE.  I am no longer willing to do therapies that we cannot do without sufficient frequency, intensity, and duration.  If I can not sustain them over very long periods of time then I think their benefit is minimal.  The only exception to this, in my opinion, is HBOT as it works well with short bursts of treatments.

*  As much as I can, I’ve worked hard to implement home programs for all of the therapies that we pursue.

– We do a CME home program, and Azriel checks in on our progress frequently through SKYPE.  He checks to make sure we are implementing the exercises correctly and changes the exercises once he feels Nathan is ready for different ones.
–  We get trained on ABR techniques and then we implement them at home.
–  I check in with Bonnie every 3 or 4 months and she gives us new programs to use with the cold laser.
–  We have a feldenkrais practitioner that comes to our house and works with Nathan twice a week.

*  The therapies mentioned above – CME, ABR, Cold Laser, and Feldenkrais – are the bulk of Nathan’s home program.  We spend 45 minutes a day on CME, 2 hours on ABR, 45 minutes on the laser, and 2 hours / week on Feldenkrais.  Once a week he does horse therapy, speech therapy, rolfing, and music therapy.  All of these therapies are either at home or within 10 minutes of our house.  All of these are sustainable over the long haul.

*  Changing expectations – A few years ago my expectation was for Nathan’s full recovery.  Then I modified my expectations to wanting Nathan to make some functional gains, like head control and sitting.  Now, my expectations have changed dramatically.  Today what I hope to accomplish with Nathan’s therapy program is to keep him as healthy and happy as possible.   Most of my expectations now revolve around Nathan’s QUALITY OF LIFE.  Every little thing he can do improves his quality of life.  Even if he doesn’t make any functional gains, my primary expectation is to keep his body in good shape so that he doesn’t experience a lot of deterioration and pain.  For example, I know hip surgeries can be quite painful and the recovery very long and difficult.  I know that if he develops scoliosis that can lead to a lot of pain and discomfort.  So my goal is to keep him as healthy as possible so he can continue to enjoy his life the way he does now!

*  We have a budget now.  Before, we spent everything we had and didn’t have on therapies.  If we didn’t have the money, we’d put it on credit and then figure out ways to pay for things later.  Now, we have a budget and we limit what we spend.  Nathan’s therapies can be a bottomless pit and we are now prioritizing stability as a family.  We can’t be stable if we are always stressed out about how we are going to pay our next credit card bill.  So now we have a budget, and if something falls outside of that budget, we simply don’t do it.

*  Enjoying life is therapy too!  We are also prioritizing enjoyment as a family as part of Nathan’s rehabilitation.  For example, in the past, I wouldn’t have dreamed of spending money on something that wasn’t directly or indirectly related to Nathan’s brain.  Now, we are starting to plan things like family vacations – not around therapy trips – but just for fun!  I am starting to realize that living life is as beneficial to Nathan as therapies, so we are starting to talk about ways of bringing more fun into his life!  I mean this kid hasn’t been deprived of fun at all – but we are simply prioritizing FUN more and trying to come up with ways to bring him more enjoyment.  For example, this month he went to an Imagination Movers concert, and he LOVED it!

*  So when is enough enough? First I will summarize the key points:

– Nathan will always need therapy.  He needs it for his health and well being.  So therapy will ALWAYS be a part of his life, our life, our budget.
– The difference is the expectations.  By removing the expectation of full recovery or functional gains, we take away the pressure and simply see therapy as part of improving his quality of life and health.
–  The therapies we do have to be sustainable and to be supportive of our family unit – not subtractive.   If it takes away from our wellbeing as a family, then it’s probably not worth it.

I will never say “I’ve done enough” and stop Nathan’s therapies.  I believe that would be seriously detrimental to Nathan.  Right now, this moment, what we are doing is enough for Nathan.  There is much more I could be doing but I am just not willing to sacrifice our quality of life.  Right now we are offering Nathan the best we can given our circumstances and this is enough for me.

My teacher once told me, “If Nathan walks, talks…doesn’t matter!  What matters is he is healthy, he is happy.  Life is short.  Meaning is not based on whether he walks or talks.  Meaning is based on his happiness, his state of mind!”  It’s taken me a long time but with every passing month, year, I understand this profound advice more and more.

Comments

  1. http://tara says

    Love this post! Reminded me of the book Blue Sky July. Read it if you haven’t already!

  2. I love this post too!

    When we got Cj’s new diagnosis I decided to focus on his happiness as his number one priority. We are so thankful Cj has never been to the hospital for an illness, just for a MRI and check ups, he has had only two colds and three tummy bugs in his seven years of life. He is one healthy and happy boy.

    I know ABR has helped his structure, and he has a great new ST to help him start on the Dynavox!

    I got so burnt out trying to fix Cj…I am done. I am going to continue a few therapies and that is it! I agree, our expectations should revolve around their “QUALITY OF LIFE”!

    I am so happy you feel the same way. We too, are going to plan more vacations! We will have our new conversion van in two weeks, and we are going to let the good times roll!

    I think our lives will be better if we go on this happy path. Like you said, life is too short, we need to live for the day!

  3. What you describe, Marcela and Cj’s Mom is a ‘therapeutic lifestyle’. Something I try to preach/teach/inform families about every.day.

    Preserving a child’s body (physical structure) while his brain grows albeit differently than others is absolutely valuable to his happiness and future quality of life.

  4. http://Sally%20Fraley says

    It matters if mom and dad are relaxed, too. A stressed out vibe from either can be an undoing of all that work you put in–
    just saying because I often thought my parents were angry AT ME because I needed glasses, corrective shoes, medication, and I felt their anger was my fault.

    as an adult, I know it was stress, but as a kid- not so much….

    s

  5. Great question, great post.
    My main goals from the very beginning were my son’s quality of life and happiness without fear, I organized the priorities very soon, but I am still not able to accept his disability. One thing is to organize priorities and the other to feel them in the soul.
    We go on vacations because I can see they have a big impact on his happiness and progress. Last week I heard that my son brought a wisdom to learn not only us as parents. It is hard to admit that I could have such a wise child and ……….
    Even I do so many things very well with a good intention, very naturally, I know that there is a big stone somewhere inside. A bit schizophrenic.
    This life goes in stages. 1) we search and try therapies to make the best rehabilitation program for our child, we travel a lot, we spent fortune on therapies, 2) we are out of energy, completely exhausted, without money, 3) that is the point we learn, we learn that a life is about something else, that maybe the best therapy goes from our hearts, from our families. A weak mother cannot expect a strong child and his good progress.
    It is like a child development, we have to go through all stages in order to learn and distinguish what is important.

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