My son has significant disabilities. I cannot afford to give him all the help he needs, so I resisted when he needed to be held and cuddled. This felt like an admission of my failure as his parent.

My son has a number of disabilities, including a genetic disorder that affects 1 in 100,000 people, and is often fatal in infancy or leads to severe disability. Luckily we live in a rich country where good medical care is affordable for us, and he was able to get the treatment he needed to keep him alive and relatively healthy. He is now 3 years old. <br><br>He has significant disability, is unable to walk or talk, and is largely unable to care for himself. He is also legally blind, although he has some small vision. He is otherwise generally healthy.<br><br>When he was a newborn, he could barely breathe, and needed a lot of help just to stay alive. He would sleep almost all day, and cry all night. I loved him so much, but I could see him, and I knew that I wanted a more interactive relationship with my kid, where I could play with him, and he would be able to cuddle with me and talk with me. I knew this might not be, and that I would have to learn to accept it, but I didn't yet.<br><br>And then, when he was a few months old, a series of viral infections hit him, and he almost died. After that, he could not even wake up to eat anymore, and could barely breathe. He needed intense medical care, and was not even technically alive, save for the aid of a machine. <br><br>He survived, but this pushed him into a category of disability that I think is often not discussed. He is not developmentally disabled (like autism or Down's syndrome) He is not physically disabled (like paralisis or RA). He is medically disabled. He is physically capable of a lot, but his body often fails him. <br><br>And then I realized that I was holding the wrong expectation of him. He was not sick because he was weak. He was weak because he was sick. His whole body was failing him, all the time. His heart was too small, his lungs could not bring in enough oxygen, his brain was too addled by medication to allow him to interact with us. His whole body was against him. And I was mad at him. I was angry that he was not enough, that he couldn't try harder. That he wasn't doing enough to interact, to play, to cuddle, to talk. I was so angry. Because I loved him so much. <br><br>And I realized that, if I couldn't love him as an equal, then I had to let him be a child. I had to learn to accept the fact that he needed more care than his father could provide. That the world was not a safe place for him, and that we had to shelter him from it. And that, as a parent, it was my job to shield him from that, to keep him safe. <br><br>And that meant holding him when he needed it. And talking to him slowly and loudly, as if he were hard of hearing. And babbling baby talk to him, and making funny faces. <br><br>And when we took him to therapy, I had to learn to accept that he needed more help than he should have to, just to do things that "normal" kids do not need help with. Because the truth is, I don't know normal kids. I only know my son. And I only know other kids with disabilities. Every kid I know needs some help. Some need a lot. And the more I got to know other kids with disabilities, the more I realized I had been trying to hold him to a standard he could not meet, and that I had been angry with him for being sick.<br><br>And I realize now that his sickness was not something he could control. That the best he could do was to endure it. And that it was not his fault. And that I had to learn to accept it, not just for his sake, but for mine. I was not going to get the relationship I wanted, not with him. But I could still get what was best for both of us, if I stopped fighting against the fact of his illness. <br><br>The other day, I was playing with him, and I looked in his eyes, and it felt like looking into my own eyes, when I was a baby. I loved him so much. And I could see that he loved me, in his own way, as much as I loved him. <br><br>And I am so grateful to have gotten that, even if it is not what I expected.