My visit from Mars, the god of war, left me with a very uncomfortable realization. It’s not like me to get so worked up over a bit of bureaucracy. I mean – I do have my temper – it’s sorta inevitable for me, given my heritage. But I work on it and try to keep my temper in check as much as possible.
So I had to wonder – why did I get so worked up over some medicine being held up by customs? And after some thinking and meditating (I had to, I was too much of a mess!!) I realized it was deep-seated, buried guilt.
Did you guys see Good-Will Hunting? The part where Robin Williams hugs Will and tells him over and over again, “It’s not your fault, it’s not your fault”? Consciously he knew what had happened in his life wasn’t his fault. But subconsciously he still felt he was to blame.
I guess that’s kinda how I feel. Even though I KNOW I didn’t cause Nathan’s malformation, deep deep deep deep deep down I still harbor secret guilt that I DID cause it. I made him. He was in my body. It was my body’s job to make him. And I made him defective. I used to joke with Owen telling that I cooked Nathan’s brain by getting in the spa before I knew I was pregnant. Or I drowned his brain by drinking too much water. But the one I never joked about because it hit too close to home was that I didn’t take prenatals, especially folic acid, therefore his brain didn’t form correctly. I was told by a neurologist early on while I was still pregnant that Nathan’s problem was likely caused by the fact that I didn’t take folic acid during those first 6 critical weeks, when I didn’t even know I was pregnant.
I’ve tried never to dwell on those thoughts. Just like Will I always say “I know it’s not my fault”. Consciously, I’ve never wasted time in that useless place of guilt.
But being pregnant again makes all those fears come right back up. Especially when my prenatals are taken away from me. When I heard that customs had my pills but wouldn’t release them I felt like it was going to happen all over again. No prenatals and another child to break. Illogical, irrational, I know…but there all the same.
This was all compounded by the horrible guilt that I felt over taking away Nathan’s 2nd CME session. For 2.5 months he’s done 2 sessions a day, but now he’s only doing one. The main reason was financial constraints, but I feel like I failed Nathan right when he needed me the most. He’s been doing so great, making progress, finally showing quantifiable results – and now I’ve reduced his therapy by half and slowed down his rate of progress. I feel like I’ve failed him. I feel angry at myself, impotent, and of course, guilty.
This guilt-fest has really worked a number on me the last couple of days.
Tonight as I was sitting in the goalie cage during water polo practice I had time to reflect and the words “It’s not a marathon” came to my mind. None of it is – Nathan’s development, or my journey with Nathan. I can’t just turn off the guilt switch in one day. I have to face the feeling, forgive myself, work with it, sit with it, feel it…until one day I can be released from that guilt. And as much as I want this therapy to be a marathon for Nathan, it’s not – he is a person first, a child, and I have to respect his feelings and experiences as one. So for both of us, we have to go slowly, at our own pace, knowing that sometimes we’ll be going uphill, others downhill, others we’ll be traipsing through a beautiful valley. But the key is that being results driven will only create expectations for both of us and take the humanity out of the journey and what’s the point of that?
So after I got scored on several times because my mind was truly not on that ball tonight I decided to chill out and once again, try to enjoy the journey. How can I not??:::
 |
| From Random |
I don’t know what you said, but appartently Nathan liked it. I am totally unschooled in your child- but it seems like he is trying to talk to you– not just making sounds- but —tell you all about it-
hmm-
I think he has alot to say—
¡¡¡verdaderamente Nathan es adorable!!!
Se ve muy lindo con su peinado en el baño,que imagino que disfruta mucho contigo,el video me pareció genial!!! se vé que tiene un mejor control de su cabeza y cuándo le hablas de su chocolate es maravilloso ver su reacción tán estimulado y tán feliz. Con respecto a las culpas todos alguna vez tratamos de buscar alguna respuesta para saber porque pasó o como pasó, o si hubiera hecho esto o lo otro o porque deje de hacer esto…..en fin somos un tremendo mar de dudas, creo que es parte del proceso vivir con ciertas culpas pero mi consejo y por experiencia propia,”NO” aprendas a convivir con ella,ya NO la aceptes “SI” desechala y ordenale a que salga de tu mente y sácala de raiz de tu vida y de la vida de Nathan,cuándo yo hice eso todo mi mar de dudas y de todos mis miedos desaparecieron,porque entendí que una vil culpa no me puede perseguir y yo no puedo estar bajo esa presion,sino que yo debo estar por sobre ese sentimiento erroneo que NO me pertenece, trabaja en eso sin tardar mucho para que liberes tu alma, NO puedes sentir culpa por no hacer terapia 2 veces al dia,piensa que eres afortunada de darle todo lo que existe de ti y de tu marido a tus hijos,lo aprendí cuándo vi a muchos niños con nesecidades especiales sin siquiera pensar poder tener la calidad de vida que hoy tiene Nathan y Catita, amiga yo solo veo en ti en tu marido y en Nathan y muy pronto en la prinsecita Isabelle una familia maravillosa, es realmente admirable ver lo que haces por lo que mas amas en la vida tu hijo, el estar lejos de tu marido,tu casa ,familia…eres una muy grande mujer y una “suuuper mamá”
Un fuerte abrazo.
Por favor,disculpa la extención de mi comentario.
Nathan is really chatty! I just love hearing the children’s voices. It is so cute! I never tire or it.
As for the guilt, well, I know about it. I got a virus while pregnant that is responsible for Emma’s issues. I didn’t even know I had it until Emma as 3 months old! and there was nothing I could do even if I did know I had it. But, oy!, the guilt!!!! It was me that passed the virus onto Emma and let it have a party while her brain was forming. But, as with most things in life, it really was out of my hands since I didn’t even know about it at the time. I’m doing my best to educate others about CMV now so they can prevent it when they are pregnant. I can’t take back what already happened, but I sure am glad that Emma’s mine! And, most days, that helps me let go of the guilt.
Oh my gosh he is so darn cute, and smart. I love how he understands what ever you are saying and his responses are amazing. I completely understand the feelings of blame that you are having. I took prenatals well before both of my pregnancys however I cannot let go of Cody’s damage caused by his Hydrocephalus. I knew something wasn’t right but let myself trust that the doctors knew best. I googled bulging softspot several times but his neurosurgeon told me he was just well hydrated. I called later and told them his head was getting mishapped and they said he was going thru a stage of rapid skull growth and that it would round back out….So I get it. I try to not let myself go there too much but some days/weeks I can’t let it go. I don’t think you caused Nathans troubles. I choose to think everything happens for a reason. Like it or not. You are a great mom and you are doing amazing things. I wish I could do half as much for Cody as you have for sweet Nathan. Hang in there.
OMG….he is so talkative. And I am not sure what you were asking him…maybe something about a latte? and I swear there was a slight head nod of “yes”
He is awesome and Daniel loves listening to this and he starts talking back to him!
So great to see Nathan chatting away. He is much more talkative than before. Marcela, you are an amazing mother and human being. I know we all have times of feeling guilty, but it does more harm than good. In that book I mentioned Emotional Freedom she discussed the feelings of guilt and how it hinders us. I just read another book–collection of essays from Louise Hay titled “Gratitude- A Way of Life”. It just reminded me of you. Miss you guys and wishing you the best.
I totally understand about guilt Marcela. I have guilt that Samantha is still not mobile, that she has seizures/cp. I wished she didn’t have to come out three months early. The guilt is forever b/c I am the person holding the baby. I don’t know when it will ever end. So I understand where you are coming from. But always remember how much you are helping Nathan. I hope you are doing better.
OMG!!!! He’s sounds so wonderful!!! I swear it sounds like he says mama when the video started. I love his expression when you mentioned the soy chai latte!! Oh Nathan you’re doing so well!
Amiga, acabo de leer este post, y encuentro que es válido que sientas todo aquello, pero sabes, yo creo que ya es hora de deshechar todo aquello que te hace sentir culpas, TU NO ERES CULPABLE DE NADA, tienes un hijo maravilloso, un marido que te apoya y una bella princesita que viene en camino, eres una increible mujer, con una fuerza impresionante, que tiene todas las ganas, fe, confianza, entereza, y capacidades de salir adelante, que le haces frente a todo problema, adelante amiga, paciencia para solucionar problemas, todo resultará bien, Dios te acompaña y los protege con su luz, y a mi niñito hermoso….. Nathan lo estas haciendo muy bien, sigue adelante, estas con la mejor mamà del mundo, la que te ama, la que te proteje, la que se preocupa por tí, la que juega contigo, la que daría todo por tí, ella es MARCELA, TU AMADA MAMA.
Animo amiga, besos
It is such a shame that we live so far apart! I think nathan and Emily would have great conversations with eachother. Thats how Emily sounds when she talks, I wonder if they would understand eachother? As far as feeling guilty, I think every parent with a special needs child feels that way. We all try and do so much for our children and when we don’t see progress happening fast enough, the guilt sets in. I just have to tell u that I DID take prenatal vitamins while I was pregnant. I don’t think that was the cause of Nathan’s issues. I truly believe he was given to u as a special gift from god! God wouldn’t give Nathan to just anyone………….he chose u! And when I start feeling guilty, I think to myself, God must think I’m pretty darn special for him to give Emily to me. It takes a certain type of person to care for these children and I feel honored to b in God’s good graces for him to give Emily to me. I could not picture my life without her! Keep doing what ur doing!