Broken Beyond Repair

The other day I jumped out of my desk chair to get to a screaming Belle, got tangled up in cables, and accidentally tossed the external backup drive to the floor. Subsequently it wouldn’t start up. I took it to the computer repair store and the diagnosis: broken beyond repair. The guy said he could try a number of things, which would be quite costly, and the likelihood of fixing the device was almost null.

It made me think of Nathan.

When Nathan was little I thought for sure, by the time he was 3 years old, he would be doing more. I figured by 3 he would be walking. As he got older I figured by 3 he would be sitting. As he got even older I figured by 3 he’d have head control. Now he’s almost 4 and I don’t plan for anything anymore.

Sometimes I wonder – how is this possible? We’ve done so much. We’ve done all the right things. Traditional therapies, alternative therapies, diet – you name it, we’ve done it.

Conventionally, the answer is somewhat simple – too much damage. Holoprosencephaly alone is pretty devastating. Then there’s damage from hydrocephalus. And damage from untreated meningitis.

Spiritually, the answer is becoming clearer and clearer.

Would the journey be different if I’d been able to “fix” Nathan? Absolutely. Quite frankly, I think I would’ve missed the point altogether if things had “worked” for Nathan and he’d gotten better and better with treatment.

The journey would’ve become all about “how to fix your brain injured child.” I would’ve put all my energy into fixing him more and more, and into helping others use what I’d discovered to “fix” their kids. It would’ve been about external, not internal, change.

However, since nothing has worked substantially, the journey is quite different for me. It’s all about spiritual and emotional growth.

The journey for me is now all about unconditional love and acceptance. It’s all about relying on God instead of myself and others in the physical plane, about learning to value every single moment, about learning to see beauty in the world as it is.

I’ll give you an example. I used to get very mad at Owen if he didn’t act the way I thought he should act. I expected him to do things a certain way, and if he didn’t do them my way, I’d get extremely upset.

Thanks to my experience with Nathan, I’ve learned to accept Owen the way he is, and to value everything he DOES do, not what he doesn’t do or what he doesn’t do my way. I am grateful for him just the way he is, even though he doesn’t spend all of his spare time researching therapies, even though he prefers to let me make all of the decisions, even though he sometimes doesn’t agree with some of the therapies I want to try. I am certain I would’ve never gained acceptance of Owen exactly the way he is if it hadn’t been for my journey with Nathan, without being able to “fix” or even substantially “improve” him.

The other day my dad asked me, “If you accept Nathan, why do you keep going with all these therapies?” I keep going because it’s not about me – it’s about Nathan. I have accepted him, and continue to learn deeper and deeper acceptance every day (acceptance isn’t a static goal, it’s an ever changing, ever deepening feeling).

But my acceptance of him doesn’t mean that I should give up on giving Nathan the opportunity to gain skills that will improve the quality of his life. As I have mentioned many times, every tiny inchstone gives Nathan a better quality of life. The fact that he can consistently roll from back to side means he can chill with his hands in his mouth, a position which he loves. Now that he’s saying “yeah” and “mo” he can get his needs met more appropriately. Even though seen individually these gains are not much, when you look at them from the point of view of Nathan’s life – and the fact that he can do so little – everything that he CAN do means so much!

Twice in the last week I have dreamed that I’ve seen Nathan walking. In my dreams I jump for joy. It was a beautiful feeling. Is this a possibility for Nathan? I don’t know! Maybe he IS broken beyond repair. Maybe he is not. Either way, we both continue to learn. To me, this is the most important thing in life – continuously growing and changing.

Post Update

Having re-read this, I realized that I can summarize this whole post in a sentence: From a spiritual point of view, which to me is what matters most in life, I am glad that progress with Nathan has been so slow as it has taught me so much about love and acceptance! If progress had been fast and easy, I would’ve missed out on so much! Sorry to be so wordy, most of the times I figure out what I want to say by the process of writing ­čśë

(At his dad’s birthday party this weekend).

Comments

  1. If Charlie said yes and no (or mo) I would dance a jig in the middle of the street. That is a big deal. But yes, I get what you mean–it takes a while to get to the point where you realize that there isn’t going to be one magic thing, but rather a lot of handwork and acceptance.

  2. Profound, Marcela.

    I will attest to continuing to work through therapies for long term quality of life and inchstones that are meaningful.

  3. Es muy cierto todo lo que escribes, me gusta aprendo mucho cuando haces este tipo de reflexiones, pero lo que mas me gusta es la forma en que vives la espiritualidad y que te ha hecho seguir con Nathan, y bueno a mi a veces me pasa que me olvido de ver a Johan de ver sus emociones por querer compensar lo que no hace, presionando para que lo haga, asi que cada dia tratare de verlo mas y pensar mas en mis emociones para que vea lo realmente importante en Johan.

  4. Cathy Jordan says

    Hi Marcela! Our job as parents is to challenge our children and be there with them to support them through all of their learning experiences. That’s what you’re doing…giving Nathan different learning experiences and I think that’s awesome!!

  5. No one needs to remind a parent of a special needs child that we no longer live in he garden. We see the wreckage daily, but in spite of our acceptance of how things are today, we know through Jesus that they will get better. The light shines in the darkness and we continue to follow the light and bring our children with us for healing through Christ. May God continue to bless you with strength, courage, and wisdom as He rains His healing power onto Nathan.

  6. Wonderful post Marcela. We do need to just Love, Accept and really put it in Gods hands. I too have tried to “fix” Cj and I have given up trying to “fix”. I have learned so much from him and he has made me such a better person! I love him just the way he is! I will never give up hope for more inchstones to come (and they do keep on coming!) I do believe certain therapies have really helped him and I will continue. I am now focusing on communication. Your post’s always hit home with me!

  7. I accepted you all (my children), just the way you are, bur I kept pushing you to challenge yourselves to always become human beings that came to this world to make a difference. Yes. I do and have done accepted my Nathan unconditionally, since the very first moment and never have wanted to change him. He’s my hero, my inspiration and the best thing that ever happened to me (close to my children, of course) as well as Belle. But I also want him to be with us for a very long time and the only way we can accomplish that is if we keep him healthy and strong. That’s why you can’t ever stop giving him opportunities and challenges. That’s part of being a parent. You also, are a great inspiration to me and my hero. Everything makes sense now. Through examining your life since you were a baby, I can understand why. Nathan couldn’t have gotten a better Mom. You two are the perfect match. I also would like to say that I have my own selfish personal reasons. Nathan has taught me how to REALLY love UNCONDITIONALLY, and that has made ME happy.

  8. Eh escuchado esa dulce voz de Nathan decir “yeah” es maravilloso!! claro que ├ęs un tremendo logro,Marce este post me ha hecho retroceder en el tiempo con mi Catalina,pens├ę al principio que seria f├ícil afirmar la cabeza,luego sentarce y haci… esperar esperar,creo que lo mas grande del mundo ├ęs el amor,el amor no se envanece,se acepta tal como ├ęs y si algo nos han ense├▒ado nuestros hijos es amar sin limites,alguna vez escuche decir que el amor de Dios solo se compara con el amor de una madre. Pensar en lo mucho que nos han ense├▒ado seria interminable de escribir,solo decir que coincido mucho contigo en lo espiritual incluso he llegado a pensar que nosotros los humanos buscamos tanto la experiencia espiritual y nuestros ni├▒os son seres espirituales viviendo experiencias terrenales,solo decir que me encant├│ este post.
    P.D=Un cari├▒oso saludo a Owen por su cumplea├▒os,eh sido testigo de lo mucho que ├ęl ama a Nathan!!
    Un abrazo.

  9. Sally Fraley says

    most of the time people don’t really have a plan to get their children from birth to adulthood. Having a kid who requires health/education/other special needs attention forces parents to think long term and establish goals for their kids. Things happen for a reason…I see from the glimses I get on this site that Nathan is a full of untapped potentials- just like any kid- and on the days you wonder if it really matters- think about Leslie Lemke and Wilma Rudolph –
    my 2 cents

  10. Beautiful! That’s exactly right! These beautiful little souls are sent into this world as perfect as can be…they are here to challenge US and help US see the true meaning of life and love. They are special needs children, but not because they have special needs but because they arrive to those who need someone special in their lives in order to make a difference. Thank you for sharing your special angel with the world!

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