Looking for advice – siblings of special needs children

Kellen and Owen and I were supposed to go to Tomah this week.  Kellen was excited to see his cousins, I was excited to see my grandma, brothers and nieces and nephew.  We woke up in the morning and started getting ready.  Owen was still asleep while his feeding was running, which is typical, Kellen was playing and I was folding the last of the clothes and getting the kitchen cleaned up.  The only thing left to do was pack our clothes.

Owen’s feeding stopped and so I took a break from folding to go to his room and turn off the pump.  He was still sleeping and his oxygen saturation numbers didn’t look like they should.  He also sounded really congested and had some light wheezing.  I walked out of the room with my shoulders slumped even more than usual (I have terrible posture).

Kellen met me on the stairs and asked about Tomah.  I replied, “I’m sorry, but we aren’t going to be able to go to Tomah.  Owen’s not feeling very well.  You’re going to have to go to school today.”  He didn’t cry for very long, I held him and told him we would do something special like Snuffy’s or McDonalds for dinner – his choice.  And then he asked, “why does Owen have a cold”?  It sounded a lot like when he still sometimes asks, “why does Scout make Owen sick”.

These aren’t the type of “why” questions that annoy me, these are the “why” questions that leave me at a loss for words.  They break my heart a little because I’d like to ask them too – and I have a few more to add;  How do you balance the needs of the whole family when you have one person who needs so much more? How do we become family centric instead of Owen centric?  I almost hate to write this one, because it’s harsh, but it’s also a real concern – how do we make sure that we raise Kellen in a way that he understands and feels love and empathy and not anger and resentment towards his brother?

Most of my Therapy Thursday posts I type and I can come up with the best answer for me.  But, so far, this is the part of the journey that I feel most alone in.  I’ve tried 6-7 different endings to this post and didn’t really think any of them were authentic.  The truth is, I need advice from you.  I’ve not met a lot of other parents with really young children who are on the special needs / micro preemie ride with their family.  I need advice from those of you who are the sibling to a special needs child and from you parents who also have/had young children when they had a sick/special needs child.

At the end of the day, I don’t think Kellen is royally messed up – I do know that he’ll learn a lot and be a better person because he has a brother who needs him.  What I’m looking for are the right words to help him understand  “life’s not fair and that’s okay”.

The only thing I really don’t want to hear, is “Kellen’s too young to remember”.  Truth is I remember a lot about my life at 3.5, I expect Kellen will too.

PS – if you’re wondering, Owen’s doing okay.  Back on steroids, which is disappointing and at least a one month step backwards in the path to no oxygen, but if it gets no worse, we’re okay with this – life’s not fair and that’s okay.


© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

2 thoughts on “Looking for advice – siblings of special needs children

  1. No advice I’m afraid…just hugs. Sooooo sorry about the trip, O’s illness, and K’s disappointment. Ice cream and kisses.

    On a brighter note–catching up on the blog and Owen is doing amazing stuff!!! Great to see.

  2. Chris grew up with a special needs brother and has talked to me a lot about it. I am happy to talk to you about it sometime.

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