I am learning all the time. I knew exactly nothing about being a mom to a child with special needs before I became one. Nothing.
And though I have learned a lot – through experience, through conversations with medical professionals and therapists who know more than I do in their respective areas, through research – there is no manual. There is no “right” way to parent Kiran.
As his mom, I am still expected to be the one leading the way.
I wish someone could definitively tell me what course to take, with so many things. The area I am currently struggling with is feeding therapy.
As most of you know, Kiran has had a feeding tube basically his entire life, and it has been his main source of nutrition as well. (Some kids have a feeding tube because they can’t quite take in enough to grow as they should; whereas Kiran’s oral eating is really just practice, still, and has only recently been in any measurable quantity).
We have been in feeding therapy now for over two years.
At his last swallow study, when there was no sign of improvement with his aspiration risk in six months’ time, I entered into a bit of a state of despair. The question that fairly consistently gnaws at me, as it pertains to all of his therapies: What about quality of life? What about, at a certain point, accepting that this is who Kiran is and moving on with our life?
This is especially poignant with feeding, for me. He has made progress. He absolutely has. But it has been so rollercoaster – moving forward just to have to move back, time and time and time again – and it had felt very stagnant for at least that six month period.
This is not to say he isn’t doing well. He has still, other than illnesses and busy weeks, taken in more orally than he has in the past. We have successfully weaned down his tube meals from 1000 calories a day to 850. This is huge. I don’t want to discount how far he’s come, because feeding therapy has helped considerably, and his desire to eat has certainly grown as well.
However, his struggle with his swallow and his aspiration risk is keeping us at this point: purees and crunchy meltables are his only safe foods. Or at least that was the case until a couple weeks ago.
We (again) introduced small bites of mashables, namely, banana and avocado. It has been going pretty well in feeding therapy, and okay at home. He primarily likes to hold the food in his mouth – he tends to lose food and forget it’s there, causing more issues with the swallow/choking risk.
And frankly, I’m just frustrated. I had everyone on the same page – Kiran’s dad, his feeding therapist – that it might be time for us to look at taking a break with feeding therapy. The added challenge is we have had a sub for some time, as Kiran’s regular therapist just came back from maternity leave last week. So I obviously wanted her to see Kiran for a few weeks and get a sense of where he was before we decided anything for sure. But now, his dad is excited and feels we are getting somewhere….
And me? I’m just jaded, I guess. I’ve been in that chair at every feeding session for over two years. I know how many times we have gotten to the avocado and banana stage before, just to have to step back to what he is better at managing. What is safer for him.
I want a break from the rollercoaster.
But I struggle, because it is never about what I want. And I don’t know what is best for Kiran. I don’t have the answer here or in any other area of his life. I just know that I have come to terms with him needing the feeding tube forever. I also know that I will never give up on him, and we will continue to push forward as long as progress is being made. I just don’t know the balance of these things.
I want a break from being in charge.