Monday, October 28, 2013

Loving our special children

I have mentioned a few times how I'm so glad that Patrick's developmental delays aren't severe, how glad I'm that he doesn't have Joubert Syndrome (a common thing in kids with OMA) and how glad I'm that most of his current health issues will disappear or at least diminish as he grows. I know that many of you who come across my blog, have children with Joubert syndrome, or with severe development delays, or with a health condition that won't get better after awhile, and that, perhaps, may get worse. Please know that by saying that I'm glad that Patrick isn't in that situation, your situation, I'm not trying to say you are in a bad situation. I'm not saying that I feel sorry for you and that you should feel sorry for your child and for you. Not at all.

I do have a child, Robert, who is healthy. He doesn't have any of Patrick's medical conditions. Knowing that Robert is healthy makes me so happy I feel like celebrating. It excites me beyond words to see him developing like most babies. I giddy when he learns a new trick very quick and on his own, like crawling, pulling up, giving steps with support. I'm a proud mamma when I see he is even ahead in the game compared to other babies his age. But, does Robert's healthy development make me feel sorry for Patrick? Does this mean I love Patrick any less? Does this mean, that I'm not proud of him? Do I have to live frustrated about his condition? Are we in a bad situation because of Patrick? Should I regret having him? Not at all. I love Patrick with all my heart. I would give my life for this kid if I had to. He is my favorite toddler in the world, and I can't believe I'm this lucky and blessed to be his mother. He brights my days, just like his brother. Just like his brother. He is my son, just like his brother. And that's all what matters to me.

And I know that's all what matters to you, too. I know you love your child dearly regardless of how he was born, because he is your son. I know, too, that as long as you love your child, there will always be a worse possible condition, for which you are thankful you are not in. You see, I love Robbie and I feel blessed to know that he is not in Patrick's condition. And you know what? I love Patrick, too, and I feel blessed (yes, blessed), that he has Ocular Motor Apraxia, without having Joubert Syndrome. I'm sure you love your son, and so you feel blessed that he has Joubert Syndrome, and not cancer, right? I thought so. You love your daughter, and despite of having cancer, you feel blessed that she is still fighting for her life. You love your son, that may now be death, but feel blessed that you got to have him once with you. Because having a child, regardless of how terrible his health condition is or was, will always be better, than to never have had him at all.

If you are a parent, then you know that you are in the best situation possible, and that's to be the parent of your child. Even if you were blessed to feel him only in your womb for a few months, you have experienced motherhood, and that's wonderful. God blessed you by letting you carry one of his special creations. God trusted you to be a father to one of his little angels. You are in the best situation. Regardless of what you suffer now, regardless of your struggles and your fears... no illness can out-weight the blessing of having someone to call your child. And along these lines, there is a powerful story that was featured on ESPN last year and that regained popularity on social media recently: Heath White, was a successful man whose life turned upside down after finding out that his wife was expecting a baby with Down Syndrome. He asked his wife to have an abortion, but she refused, thankfully. Weeks after the baby is born, Paisley touched his father's heart, making him change from being a truly egocentric person, to a loving, caring and proud father. You can learn more about their beautiful story here.

Sometimes I wish Patrick didn't have OMA, like I'm sure you wish your child didn't have Joubert Syndrome, or Down Syndrome, or Cerebral Palsy. These health conditions should happen to bad people, not little innocent babies. There are times when we wish they had been born perfectly healthy, there are other times when we accept they are sick, but wish they got cured already. And that's OK. Just make sure that the times that abound are the ones when we value the better person we have become, because their special needs were craving for that better person.

Had my son been born a perfectly healthy child, I would have never learned to treasure his sibling's first steps as much as I do. Had my son been born a perfectly healthy child, I would have never tested my strength, my patience, my perseverance, in the way I have. Had my son been born a perfectly healthy child, I would have continued to be a religious woman, without knowing what truly means to have faith in God. Had my son been born a perfectly healthy child, I would have never met all the special mothers, and wonderful therapist and friends I have made thanks to his condition. Had my son been born a perfectly healthy child, I would have never started a blog, with the only purpose of helping someone I don't even know. Had my son been born a perfectly healthy child, he wouldn't be him, and that would be a shame.

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