Mission Impossible?

When we first met Ramon he referred to Nathan as Mr. Mission Impossible…and then he said, “Not for long”.

I have to admit today I am doubting those words. I feel like I am walking through a desert with no end in sight. I feel like it’s windy and dusty and there’s no sign of water and I am walking with all my might but getting nowhere.

I look at Nathan today and I see the same Nathan I saw two years ago. I see the same floppy head, raggedy andy trunk, the same rejection towards therapy. Still his head flops all over when he’s in his wheelchair and we cannot go 1 minute without having to fix him.

Here’s a picture of him at the beginning of the year in the Hart Walker. I see him today and I just don’t see any improvements.

I am sorry. I have tried so hard to stay positive. I have laid in bed all night thinking of all of the things he has going for him, I have sat and watched every single video where he did something remotely well. But then I look at the child in front of me who basically has the same skills that he had as a 6 month old and I wonder – am I undertaking an impossible journey? When do you call it quits? When do you say, it is what it is, and take all that money, time, energy and put it on something that actually HAS an ROI? Like, spending a month on a beach sipping Margaritas (virgin ones of course until the baby comes)?

I am sorry. I know you are thinking I must have multiple personality disorder. Just a week ago I was writing about acceptance and today I write about the opposite. Two days ago I said I was a mother warrior and would never quit, today I am writing that I am nearing the end of strength. Maybe it’s just that 1 month of being sick takes it out of you. I went from that awful gastroenteritis that really wrought havoc in me, then I got a UTI shortly after, I got 2nd degree burns on my feet, now a terrible cold. If I were home I’d know just what to do but here, I’m not in my familiar setting, I don’t have the tools that I would use if I were home. And today to top it off I got some kind of allergy and on top of this awful cold I itch all over and I can’t take benadryl or anything that I know of to stop the itching. How much more can one pregnant mother take?

A few people have written that they see a difference in Nathan. But the truth is, I want to believe you’re right, but I just don’t see it.

I was considering staying here at least until December, possibly until March. But now, today, I have to confess – I am all out of steam. I’ve nothing left to keep me pushing. If I saw Nathan progressing, if I saw him WANTING to progress, I would find energy somehow, somewhere. But for the last 3 weeks, since he’s been sick and recovering, he’s just not into it anymore. He seemed interested in the first 3 weeks and if he continued with that interest, I would’ve done anything, ANYTHING, to extend this opportunity for him. But I don’t see interest, I don’t see progress, and I’m oh so tired.

It’s time to pack up and say – I tried. I really really tried. Now it’s time to go home, lick my wounds, and recover some steam, try again later. But for now, today, I’m collapsed on the desert sand and spent.

I’m sorry if I’ve depressed you. I wanted to be a source of positive energy to others. But more than that, I want to be honest in our journey. And honesty requires sharing the deep dirty droughts too.

PS. I guess it’s in the air, Caliegh’s mom feels similar: October Rain. The sad thing is, I really can’t say Nathan is progressing in any areas, and really hasn’t, so I’m even more depressed now. And now I’m going to try to stop itching, coughing, and blowing my nose and get some sleep. Good night.

Comments

  1. I don’t have the words. I don’t have answers and if I said anything at all, I would probably be making it up just to make you feel better. But I can say that I’m here for you. I’m a stranger. I don’t know all of your history. But you aren’t alone and you aren’t a bad mom for feeling this way. Regroup. Do something for YOU, so you can inspire your son. You’re doing great.

  2. http://Mary says

    estoy un poco triste…. me isistes llorar…. Nathan has progressed a WHOLE LOT! not as fast as you would like but hes progressed. give it some time…… cuidense mucho,les mando un GRAN abrazo

  3. http://Kenia says

    Marcela lo primero: Todas pasamos por momentos donde nos comemos la vida y otros donde la vida parece que nos devora, es cuestion mas bien de un dia detras de otro y asi se aclaran las cosas, también que en cualquier terapia hay largos periódos de aparente estancamiento donde luego un buen dia sale lo que has venido trabajando, pero, si tu lo que ves igual no es cuestion de después de un avance una epcoa de estancamiento, entonces son palabaras mayores, entonces es posible que si nunca hubo un avance es que esto probablemente no le esté siendo fructífero. Yo soy de las que creo que detrás de la discapacidad haya UN GRAN FEO NEGOCIO. Por eso creo tanto en el trabajo de los padres con los niños, mucho mas que el que un profesional te cobra a diario, si son pautas y tu lo trabajas tienes que ser verdaderamente sincera con tigo misma de que estaá funcionando, no por las falsas expectativas, si no por el tiempo maravilloso que le estás haciendo perder a tu hijo en cuanto a juego, diversion y lo mas importante. otra terpia que le encaje a EL. a su genética, a su plasticidad, a su problemas. Todos no son iguales, lo que es bueno para uno no tiene por que ser bueno para otro. Por eso la madre sabe cuando SI Y CUANDO NO. y ahora te hago solo una pregunta. Por que no te replanteas ABR a ver que pasa?. Probablemente sea menos esfuerzo para Nathan, para ti con el embarazo y el pueda disfrutar de su entorno de casa y muchas mas horas de juego. Creo que despues de mucho probado puede ser una buena alternativa, te parece?

  4. What an honest post. I sometimes think the journey is so long and we are well prepared for it when we set out and then as the journey keeps going, we just want to stop, take a break, regroup. There is nothing wrong with taking a break. It is a long journey and we won’t get there in a week, a month, a year. We have a lifetime.

    And, with you taking a break I am sure that doesn’t mean not continue to work with Nathan, it just means it will look a bit less structured and he will learn with play.

    I have to say that you saw fire in Nathan when you first arrived. I saw how good he was doing in the videos. He inspired me! Gave me more energy, somehow, to continue on my journey with Emma. When you get sick, it is so hard to just bounce back. I’ve found with Emma that each time she gets sick she regresses and takes a long time to get back to where we were at and then plough forward. Maybe that is where Nathan is – the short period of regression before he finds his fire again. Also, you are away from family, your dogs, your natural surroundings while you are pregnant and sick! I’m amazed at the strength you are showing.

    Only you know what is best for you and Nathan. Don’t be afraid to change your route, duration, stop-overs, etc. on the journey. I wish you a good nights sleep! I find that I make my best decisions while I am having a good night’s sleep and when I wake up in the morning it is all so clear to me!

  5. Stacey, thank you for your support. Your post today said a lot – I guess it’s those ambiguities that make things sometimes exquisitely beautiful, sometimes painfully difficult! It’s a journey and sometimes I feel strong and I feel I know exactly who I am..others, I am tired and lost. But I love my son and I welcome every part of the journey!

  6. Mary – thanks! You’ve always been so positive – I wish I could maintain that same view!

  7. Kenia, ya empezamos ABR 🙂 Le hacemos entre 1 y 2 horas todos los dias. Estamos por el momento solo haciendo pecho, y cuando volvamos a la casa, voy a empezar con jaw y cuello.
    En realidad no creo que el problema sea Medek. A veces me pregunto si es que simplemente Nathan no tiene la capacidad de tener desarrollos fisicos. Es que tiene TANTO dano en el cerebro. No solo tiene la holoprosencefalia – que por si es un diagnostico bien terribe – tambien tiene los regalitos del neurocirujano que le causaron todavia mas dano – compresion del cerebro por 4 meses por hidrocefalia no tratada, y una meningitis bacteriana que no se trato por 6 semanas. Conozco ninos que tienen muchas dificultades con cualquiera de estos 3 problemas – al Nathan lo retan los 3. Entonces a veces pienso – tal vez el simplemente tiene muy danado el cerebro y en realidad estas terapias no lo pueden ayudar ya que el cerebro no tiene los medios para responder. Todavia creo 100% en Medek – estando aca con Ramon veo los cambios en los otros ninos que lo vienen a ver. Pero llega un punto en el que me pregunto – cuando digo “enough” y acepto que Nathan en realidad no puede? Es que hemos tratado tantas cosas – y en todas oigo historias positivas – menos Nathan que ha hecho de todo pero nada lo ayuda. Pero bueno, yo creo que mas que nada necesito un descansito, necesito volver a mis casita, a mi camita, para que me conscienta mi marido y mis perros y mi familia, agarrar fuerza, y luego salir adelante otra vez.
    Me alegra tanto tanto tanto que Cova haya visto tantos cambios positivos con ABR – y si, estoy 100% de acuerdo que la rehabilitacion debe estar en mano de los padres – Medek requiere de un home program que es tan, o mas, importante que los intensivos con el especialista. Pero es mas facil hacer esas cosas en la misma casita de uno!!! Un beso, gracias por tu apoyo!!!

  8. http://Karym says

    Siento tan de cerca tus palabras, hay veces en que se nos acaba la energía, que todo nos parece difícil, que no llegaremos a lograr lo propuesto, pero sabes que, hay un minuto en que miramos a nuestros hijos y nos despertamos, y para que pase eso, hay veces que necesitamos un tiempo de descanso, somos mujeres con demasiada ansiedad, queremos ver logros de inmediato, pero debemos dejar que nuestros niños se tomen su tiempor para demostrar sus esfuerzos y logros, Marcelita, te mando mucho ánimo, no tengas miedo a decaer, es tan válido, has luchado con todas tus fuerzas y permitete un descanso, verás que todo se rearma y tendrás energías para comenzar de nuevo, acuerdate después de la tormenta sale el sol, las alergias y las molestias pasarán y veras como todo se vuelve bonito, amable y confortable para ustedes. Me imagino que debes extrañar tu entorno, es tu segunda piel, yo me animo a decirte que cuentas conmigo para hablar y desahogarte cuando quieras, o tal vez pasar un momento distraido. Te mando un abrazo muy grande y mucho animo y ten fe que Dios siempre esta contigo, él te dará la confianza que de alguna manera puedes estar perdiendo ahora, te iluminará para encontrar el camino más adecuado, un abrazo grande amiga, cuenta conmigo.

  9. Hi Kristina, your comment was SOO perceptive and insightful, thank you! You were right – I did get a good night’s sleep and woke up not quite so sick and I did feel a lot more calm and clear. 4 weeks of being sick can really take it out of you! I have written a lot about self care and about how, if we don’t take care of ourselves, it’s hard to give our kids everything they need – and I think I am living proof of that now.
    Being here in Chile has been wonderful but I lost most of my usual self-care techniques that I did at home – yoga, massage, meditation, time away from Nathan to re-find myself – and without those things I find the energy tank runs real low. Both my mother and a good friend reminded me that Medek, and really any therapy, require a LONG TIME to show results and they only do so after months, sometimes years, of consistent effort. I agree to that – but I just need to be able to find the energy within me to keep going! A little break at home I’m sure will renew me and get me ready to go again.
    Nathan really was doing so well the first 3 weeks. I was so proud and happy and inspired. But then he got sick and he did lose his fire and I think he’s having trouble finding it again. I am hoping you are right and he just needs a little bit of time to regain his energy!
    I am so happy to hear that Nathan inspired you in your efforts with Emma. She is so strong and determined to succeed that I have no doubt she will continue to amaze you!

  10. Your not a bad mom and you haven’t given up. Trust me it takes awhile, look Ryland is almost 6 and it’s taken 6 years to get where he is. You’ve pushed and fought for everything that Nathan can do, heck your in a different country for your son and you feel like sh*t but you still made the trip.
    With Ryland we really didn’t start pushing more therapies till he was 3 and many of his therapist told me that this or that may take awhile because he needs to mature, which I believe is true. The walking didn’t really take off till he was 4 1/2 and now he can get the walker moving on the carpet, that’s if he wants to go somewhere.
    Everything you want for Nathan will come in some way, it may not be the way you want it but it will come in the way he wants it.
    I know your worried about the head control but with Ryland we never worried about it to much and really didn’t do much PT for it and he on his own started to hold it up more, we still he problems from time to time but he did it on his own and in his own way. Just like learning to drive a car, you can learn fast but it takes many years before you can drive and put makeup on at the same time.
    Let Nathan be Nathan and he will show you what he can truly do.

  11. http://Cybell says

    ¡¡¡que maravilloso sentir que un ejército está pendiente de uds. y entregando tantas energias positivas!!!creo que todas las madres pasamos por esta situación,quién no ha vivido una ansiedad o quién no ha vivido una situación incierta por este camino que a veces se torna con tantas dificultades,solo puedo decir que tu lucha ha sido sin limites con tu niño,que no hay dudas que eres la mejor mamá que Dios le concedió a Nathan,que eres capaz de enfrentar todo por él,pero creo que debes respirar un poco y descansar,debes darte el tiempo de reponer fuerzas y de recuperar tu salud ,al igual con Nathan¿quién puede rendir bién cuando se esta enfermo? todo tiene su proceso en la vida,y cuándo hay debilidad en el ser humano es cuándo el poder de Dios se perfecciona en tu vida, PACIENCIA(es tener paz y saber esperar) que cualquier tratamiento o terapia tiene su tiempo….hace algunos dias el kinesiólogo de mi hija me dijo “no le tengo miedo a ningún diágnostico médico,porque he visto niños postrados y luego de 2 o 3 años los he visto jugar a la pelota” esos son milagros que si existen!!!y sabes que lo encontré tán sabio,aún no esta dicha la útima palabra,este camino tiene altos y bajos,pero sé que ya saldrá el sol resplandeciente para tí.un fuerte abrazo.

  12. Marcela,

    I know exactly how you feel, and I’ve only been on this journey for seven months. I feel the same way sometimes about my blog-0ne day I am positive, and the next I am down in the dumps. I think it is okay to be down in the dumps every once in awhile, and it is important for those around us to know how we feel. We are human! We can’t be everything to everyone, all of the time! You are right…you need to get some rest and take a break. When you are feeling better, you know that you will get right back out there, and fight for Nathan! I hope you start feeling better soon! Get some rest! 🙂

    Carly

  13. Bueno, lo hemos hablado por fuera y también ya entre todas tus amigas se ha dicho todo. Todas pasamos por momentos así y está bueno expresar todos nuestros sentimientos.

    Pero creo qeu la clave es paciencia y CONSTANCIA. Tu dices que a Nathan no le resulta lo que a otros niños sí, pero cuánto tiempo llevan en las terapias los niños con los que estás comparando? Por ejemplo Rocío está muchísimo mejor gracias a ABR pero llevamos más de mil horas manuales y mil con máquina, más de 1 año y medio trabajando diariamente.

    Si sientes que Medek y ABR son la combinación perfecta, entonces trabaja en ellos como hormiga durante al menos 6 meses y entonces evalúa. Ninguna terapia rehabilitará a nuestros niños en unas pocas semanas.

  14. I wrote that too late… Me faltó decir que sí creo que Nathan puede seguir desarrollándose y lograr más cosas.

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