Rowan and I are the only ones up and going. We are up because his legs are still achy. I was going out to water the far plants (the ones in direct sun all day) before the sun got to high and hot. Rowan wanted to go too. Despite his pain he lugged three half buckets of water out all the way out there, helped water them, and do a bit of clean up (because the people around us have less respect then they should). We chatted about this and that. He saw a bug and told it to "GO!" off his plant. Amazing morning. Makes the lack of sleep disappear for awhile.
In response to a question asking if he is talking more: He has everyday words that we understand (and people who know how to listen well) that aren't all that clear to other people like NahNah is mommy, A-da is Dada, Caitbug is Cait-er-bug which is Cait's nick name. Go, car, drink, no, sissy (for Meagan) Octonauts (though not clearly, we know what he means), bye, hurt, leg....
Mainly he parrots or talks in syllables and signs for family and people he knows well. He doesn't talk to strangers other than a good bye kind of thing. He tries to "say" combinations like "go now" but *shrug* they don't think he will ever have totally clear speech or the muscle tone to achieve "everyday vocal communication" He looses strength so quickly.
The sometimes word that we get that makes me melt into a pile of goo is "ove ew" while he tries to do the sign for I Love You (his finger control makes sign very hard and then there is that whole lack of tone thing again)
A friend lovingly replied: that I should never forget the power of love. When her son was born they said he wouldn't live, but if by some miracle he did, then he wouldn't achieve anything. And he is now living on his own. We never know what the future holds.
I responded with: Rowan wasn't going to live, he'll be 5 in July. He wasn't going to walk, he runs sometimes. He wasn't going to hold a pencil, he scribbles me shopping lists. He wasn't going to say any word clearly, and I cried when he said "ove ew."
He lets nothing hold him back and I certainly would never add to his burdens. I will trumpet his success. BUT I have to keep some realistic points in mind when I publicly talk about him to family, friends, and others because while I see how far he's come, others don't understand how hard he had to work to make it happen.
They judge what he doesn't say, doesn't do on his own, or how he isn't like other kids. They see spoiled, babied, and lazy. They have never tried to understand the seizures and how they set him down for days on end, or how just eating half a slice of pizza tires him out, or how the heat can send him to the hospital. So when I get asked a question I tend (by habit?) to explain the why and the realistic noises that the doctors, therapists, and other caregivers make. (defense maybe?) If we know what others expect of him and we see him go past it, then they (those who don't understand or who doubt) know what I, what we, already know - that he is perfect just being Rowan.
One wonderful response: I received love and support from friends after that but I wanted to share one specific one. You may know here from some responses she has left on other posts. Sometimes I think she says what I mean far better than I do. *smile*
She said: "I understand quite a bit.. with my niece we lived through the hurtful things that doctors would say about her and even put up with "well meaning" family and friends who said the wrong things and we learned to survive the harshness of being judged and misunderstood. We learned that not all people are the classic patient in a text book and we learned to pick the right words when talking with professionals that had no clue what it was like to stay up all night with a sick child that couldn't speak and tell you what hurt. I do know what it's like being scared of the unknown and finding precious memories in the most mundane things that others would over look.. a uneventful day was a blessing to us.... "
My Point: It isn't easy to understand what really goes on in someone's struggles. I understand that dealing with a chronically ill child is hard, but even with all of my experiences, I can't say how it would be to have a child suffer through cancer or blindness.
But the understanding that I do have, helps me be more mindful of my reactions and treatments of others. I use what I deal with to know what I can do to ease the burden of another, even if it is simply knowing that a sleepless night means we are a little more raw, that therapy can be as draining for the caregiver as it is the patient, or that an hour that the family is all asleep means that mom can just be and that is worth gold prices and then some.
I judge less, I offer a helping hand instead of criticism, I talk to the child others won't look at. I do it because I know what it's like to be talked about cruelly, to have my children left out, and to be forgotten by those I thought I could count on. I also know what it is like to have friends and strangers pull together to help me, to have someone find joy in Rowan's smile even when he ignored them, and for someone to say that my words helped them through.
Just be there, try to understand, ask what is needed, take a minute to try and see it from there side. And if you must judge, do it somewhere else because no one needs that around them when they are battling ... something.
Be Nice to each other.