The main problem with becoming a parent is the lack of instruction manual. It’s worse with a child who has special needs – no two children are the same, and even with something more common like autism, one parent’s methods are not going to be the same as another’s. With something much rarer like caudal…

The main problem with becoming a parent is the lack of instruction manual. It’s worse with a child who has special needs – no two children are the same, and even with something more common like autism, one parent’s methods are not going to be the same as another’s. With something much rarer like caudal regression, you can find the medical information you need easily enough – thank you, Internet – but finding other parents who’ve taken care of an afflicted child is not difficult, it’s nigh impossible.

It’s so hard to know what the right decisions are. Did I make the right choice for my child? How many surgeries are worth the possible benefits? How much pain is worth the possible benefits? How will I know? When will I know?

These are all questions running through my mind right now. Having had the night to think over what Namine has had done and what her doctors have said, I am sure of two things: Namine’s stoma closure was the right thing to do, and Namine will need several more hospital visits for her feet.

According to several ENT docs, what can happen with a trach stoma, especially after a long period of time being trached, is that the body grows skin, sort of like scar tissue, down toward the trachea. So what Namine had to have done was have that skin removed, and there’s understandably some pain in her neck. But the thing is, with that skin there, her stoma would never have closed by itself. And this morning some ENT docs took a look at her neck, and they think it looks good.

Her feet are another matter entirely. Like I said yesterday, they were not able to be brought all the way up into the normal position; the arteries are too small and fragile to sufficiently profuse her feet. So every two weeks, Namine will need to be brought in for another re-casting. This means more anesthesia, more being put to sleep, more hospital stays, and more pain.

When Jessica and I agreed to subjecting Namine to the club foot repair, it was under the impression that there would be one surgery. One surgery, and it would be done. The doctor never told us about the possibility that it would require several re-castings – something he mentioned that has been known to happen in other patients as well, something I might have liked to have known before. Of course we knew there would be pain. But now the consideration is not just the pain she is in now; there is also the prospect of pain to come, pain to occur every two weeks.

The pain, of course, is necessary, but for a greater good – to allow the possibility of walking. We didn’t know, we don’t know, if she will be able to, not for sure. But we decided that it was worth the risk, so that Namine would be given every possible chance for the most possible advantages. But having to consider all that pain and suffering she now has yet to go through, I don’t know. I don’t know what the right thing to do is. I don’t know anymore if I still think all that pain is worth it, even for my daughter. I do want her to have every possible advantage. But I would rather kill myself than cause her more pain.

7 responses

  1. You put yourself in a very difficult position in that last sentence. I encourage you to back off from that dichotomy. For both of you. And your wife. Perhaps you are just using hyperbole to express your pain at the thought of causing her pain. But similar to the seriousness of a weapons comment as one boards a plane, references to suicide are not to be taken lightly.

    There are parents who have been and are in your position.

    I’m going to suggest this video for you and tell you a bit about it so you can choose to watch it, or not. This is a TED production. If you are not familiar with TED, they are presentations that are inspiring and thoughtful. Amy Mullins is a bilateral lower extremity amputee after optional amputation of her two non-functional congenital legs. See what she thinks about her growing-up and about adversity.

    Namine needs you to get her through this. You can do it.

  2. Barbara, whoever you are, G-d bless you for sharing that video link. Namine is definitely not disabled.

    Paul & Jessica, I can’t pretend to know the pain you’re going through as parents. As a former caregiver, I know that sometimes you have to make painful choices to give the one you care for a chance at the best outcome, knowing that there will be long term physical pain. The memory of the physical pain decreases with time. The mental pain if “what if” or “should I have” is far more excruciating and lasts forever.

  3. I’d say hyperbole is more likely. I wouldn’t kill myself as long as my wife and daughter are still alive. I’m upset that Namine has to go through this, and I’m angry – mostly with myself – that I am the one to put her through it. My hope, however, is that one day, even if she doesn’t forgive me, she understands that I was acting on behalf of her best interests. That I was trying to give her as much as I possibly could in this unfair world.

  4. you are an amazing parent. Namine will forget the pain. She’ll never be alone, so she’ll never have to deal with the pain alone. That’s important. We make the best decisions we can as parents, God will bless those decisions and we need to leave the outcome with him. A tough thing too do, I know! We’re all in this together. I love you all.

  5. You guys are doing great! I know the first few years are hard. Do you listen to the doctors or to your gut. Alex was born with his knees and hips dislocated and was casted for the first three months of his life. We had to bring him to the hospital once a week for a re-cast and it did bring his knees back to the right position. We are now faced with a surgery decision as well do we try to put his hips in place or just leave them. Does Alex have the muscules it will take to hold the bones in place if we decide to do the surgery? If not and we do the surgery then we put him through an unneeded surgery. There is a reason God made these special little ones. How much feeling does Namine have in her legs/feet? Alex also has club feet and we might need to do something with the one foot that is getting worse. Keep looking to God for comfort and reassurance. Pray that the decisions he lays on your heart is the right one and God will allow Namine to complete what he put her here for. My prayers are with your family in this hard time. Seeing people suffer is always hard but it is gut renching when it is your own child. Please know that we are here for you. Not that are children have the same abilitites but that they do share the fact that they have different abilities.Let us know if you need anything

  6. Paul.. you and your family truly amaze me. Your heartfelt blogs… they are such an encouragement to me. Know that little Namine is in our Lord’s hands… as you all are. Continuing to pray for you all.

  7. I’m glad she is doing better today. I hope you get to go home tomorrow. Love you all.

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