Decisions

You would think that the hardest thing about having a child with cerebral palsy is their lack of mobility..or the fact they can’t speak or walk or move..or the fact that you have to carry them around everywhere…or the fact they require so much work – surgeries, appointments, therapies.

In my opinion, the hardest part of having a child with CP is none of the above. I feel that the hardest part is the decisions that you, as a parent, have to make.

Which therapy is best? Where? How much? What medicines? What doctors? What surgical procedures? What orthotic devices? Equipment? What to fight for? How to allocate your resources? What is priority? When?

And even worse than the actual decision is the repercussions of your decisions. Because what you decide for your child can have very life-altering circumstances. If I don’t do X for Nathan it may affect his physical structure. If I don’t do Y for Nathan he may miss his chance to learn to do X, Y, or Z. You get my drift. Especially when you are dealing with medical stuff, like seizure medicines, other medications, orthopedic interventions. It feels like a house of cards.

Do you struggle with making decisions for your child?

Comments

  1. all. the. time.
    in fact, i’m fixin’ the write about how one such decision is not panning out the way I wanted it to!

  2. Yes, often. I can’t sleep, I have a headache but it is me who has to decide. It is exactly as you wrote. Sometimes a therapy can have an impact on the other therapies, on the future and I have to make sure not miss it. From the very beginning my husband said that he is the most afraid of the situation that someone says “if you started with that earlier….”.

  3. I am so with you on that.. Sometimes my brain just feels so full with so many different decision trees.. I often get to a point where I dont want anyone to talk to me.. And of course I always worry about Bella’s big brother Max and how its all impacting him too….

  4. http://Kenia says

    Ay Marcela, tremendo tema. Supongo que jamás estaremos en lo precisamente correcto, como la educaciòn por ejemplo de un niño “normal”, poque ya sabes que para casi nada en la vida hay libro de instrucciones (solo para electrodomésticos y poco mas). Ahi yo aplico la intuición como madre, siempre se que conozco mas a mi hija que los médicos que la ven en escasos minutos con mucha información de libro y miles de caso que se le entremezclan en la cabeza y pueden creer que tiene mi hija mas o tieme menos, pues las comparaciones también existen en ellos. En fin, si es verdad que la estructura de un niño si no está preparada no debería forzarle, pero también hasta donde valla pudiendo yo le daría TODAS las posibilidades de estimulación del movimiento por repeticiión posible porque la plasticidad es verdad que funciona. Siempre dije en mi blog que estoy con ABR y sigo, pero mi niña logró lo que logró por moverla, por hacerle, pro trabajarla muuuuuuchoo y su cabezita y sus posibilidades se adaptaban cada dia mas a lo nuevo que experimentaba, o mejor dicho, que yo le proporcionaba. En fin, es mi humilde opinión. Yo siempre con mesura he sumado (en rehabilitar a la niña), no me he limitado…
    Un besito!

  5. You have expressed this well, Marcela and I know Carla will give us a good understanding of how these decisions affect parents. I live in close proximity to this kind of stress. I wish I knew one overriding principle that mitigates the stress.

  6. Yes I do. All the time! Which is right which is wrong, am I over doing it or under doing it? I think most (not all) of the Moms do all the research on meds, supplements, therapies, Dr’s and then we do all changing, bathing, cooking, feeding, Dr appointments and doing all the therapies. Oh and also making all the decisions on IEP’s! I have a headache just thinking about it.
    My husband has no idea he just nods his head and says I am doing a great job. He is great Dad and helped a bit with ABR but he has no idea how much I struggle with choices and decisions.

  7. http://Gala says

    Hi Marcela,

    That’s so true.

    I sent you an email with couple questions. I hope you’ll have a min or two…

    Thanks!

  8. Me, too! Looks like we are all in good company. Not only do I struggle with the decision, I then struggle a bit after the decision is made. Did I make the right one? Is this what we should be doing? What are we not doing by doing this? You know, driving myself crazy 🙂

    I sometimes think the internet and chat rooms can add to my anxiety over the decisions – you know all the other choices out there where in the pre-internet age you might not have known all the options.

  9. hola marcela,. este post me ha tocado mucho porque siempre lo que pensado y cada que vamos a hacer un cambio en relaci[on a Johan es tan dificil porque no sé si es el correcto o mejor para él,. o lo hago pensando en mi aunque sea algo que le afecte directamente a mí,. y no hay nada que me de respuesta de que es lo mejor, solo el tiempo,. pero que dificil es!!! tienes toda la razón en lo que escribes… cada día es una toma de decisión pero una vez un psicológo me dijo que la mejor decisión es la que tomas en el momento y que no hay que pensar en el hubiera porque en ese momento fue la mejor.. aún así que duro!!!

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