autism · Down syndrome

Too.

I wore the thickest pair of rose colored glasses after Abby was born. It wasn’t wrong, and I think to a large extent it was my own naivete and denial. I patted my own back as I said, “Well, I’ve done special needs before with Casey’s autism, I can do it again. I got this!”

But “again” was the wrong word, and as I’ve spent a few more years doing this special needs thing with yet another child, the more appropriate word…the word that carries the real weight of what we’re dealing with is: “too.”

I figured I that I would be okay because I knew my way through Early Intervention. I am well versed in IFSPs and IEPs and all of the other acronyms. I had already had been schooled by life in special needs. But I hadn’t been in Down syndrome. And definitely not in having one with autism and one with Down syndrome, too. I saw the two disabilities as separate from each other. I didn’t think much about doing them at the same time. I didn’t see that they would be added to all of the “regular family” issues we deal with our two neurotypical kids.

Day to day, there seem to be a million little issues. The big issues come, and are mostly related to Abby’s health, but basically, what we are dealing with are small things. Too many small things. Today Abby had her post- op appointment with her ENT. We then scheduled an appointment for another swallow study, sleep study, and another appointment with him before we schedule the surgery to fix her laryngeal cleft. He said he’d work on moving her hearing aid fitting up with the lady who did her ABR and let me know. Tomorrow I have to call and get ophthalmology appointments for Casey (he’s starting to have a little bit of a lazy eye) and Abby.  I will make a call to get her in to see an orthopedist because it looks as though she has hip dysplasia, along with the issues she has with  her feet and ankles.  Her immunology appointment is next week, and Casey’s appointment with the Developmental Behaviorist is the week after that.  All four kids have dentist appointments and their yearly physicals in the next few weeks, too.

It’s a lot of appointments. It’s a lot of little freakouts by Casey at home. It’s a lot of frustration by Abby because she can’t always tell us what she wants. It’s a lot of Yo Gabba Gabba turned on too loud so that Abby can hear it.

And, quite honestly, it’s a lot of random pangs of sadness for me. I’m not a sad person and my kids aren’t to be pitied. They are happy and are going to have great lives. There just are times where I’m sad that it’s not the lives I had planned for them. Where I have to deal with what could have been and what is. The tears that came out of nowhere when I was in Toys R Us and realized that no matter how many baby dolls we buy Abby, she’ll never be a mother. The pain I feel when I visit the school and find Casey eating lunch alone. The weight I carry that I’m not quite sure how to take off, or if that’s even possible. And I know well that this isn’t about me. That some might see this ache as selfish, which is fine. It’s real, and something that I have to deal with, too.

Along with the million little hard things, there are enough freaking amazing things that keep a quiet balance of joy in our home. When Abby learns a new sign or when Casey makes a new friend who loves him for who he is. When Carter makes the basketball team or when we found out that Peyton is “gifted” (and also so super crazy). I wouldn’t trade my life and what I’ve learned. I wouldn’t trade the person I have become or even the little people I’m watching all of my kids become. Our family was meant to be this way. I believe that. And no matter how hard things get, it is all offset by the big hunk of a man I call my husband. He makes the hard days not so hard, the good days great.  He deals with everything that comes at us much better than I do. With ease, and with patience.

And he has to deal with ME, too.

 

20 thoughts on “Too.

  1. Lexi: Your post brought tears to my eyes. I agree that you have a right to be sad and that is okay. I pray that you find the strength to continue to be all you can be to your children. Sending hugs your way.

  2. You deserve some major hugs! I think half the challenge of being a parent to multiple kids with special needs is dealing with all the appointments. Sometimes just THAT part gets to be too overwhelming…. Props to your husband for being able to support you properly too. I’m certain I would have lost my sanity long ago were it not for mine (and knowing we’re not the only ones living this kind of craziness)!

  3. I am so absolutely relating to this post. My daughter has Childhood Disintegrative Disorder (which is on the autism spectrum) and then my son comes along and gets diagnosed with autism 2 years later. And I thought “Well this sucks, but I got this! I know everything about this!” Oh, how wrong I was. They are both SO different and though their disabilities are both within the same spectrum , their varying medical and behavioral and educational needs are vastly different. It’s kicked my butt. Now I’m keeping an eye on kid number three and thinking “Oh crap, if you are too….well, I guess I kind of know what to do.”
    And I certainly don’t see the pangs of sadness as selfish, just honest. If you told me they never happened, I would question your humanity.

  4. Oh man. Totally understandable pangs. That’s a lot of little somethings going on with some big ones. Selfish doesn’t quite seem right. It’s your life, it’s your feelings. They are your kids and this is your life.

  5. I really feel you on this. The pain when Casey eats alone and joy when there is a friend. I completely get that! That is Johnny and me. It’s okay to be sad. It really is. I relate to that feeling. I was on the couch for 3 days in tears when we learned Madeline would have Down Syndrome while Johnny was still an 8 year old toddler. Too much. There is real grief in being sad for lives you hoped for. Everyone wants that for their children.

  6. I am the mom of 3 – the oldest is 3 1/2 – my middle man has Down Syndrome. Coming across your blog has been one of the greatest therapies for me! I love your honesty. I love how when I read your posts I feel like we are the same person. I don’t even know you but I think you are a wonderful mother and an amazing person for sharing your story. I can’t express how grateful I am for your words. You make me realize I am not alone! Thank you!

  7. Beautiful work…I get the sadness, that our family will finish with us, no grand kids or marriages. I too deal with two and its a very different experience with both physically but emotionally it’s the same journey…

  8. The heart of this post resonates deeply with me. “I’m not a sad person and my kids aren’t to be pitied. They are happy and are going to have great lives. There just are times where I’m sad that it’s not the lives I had planned for them. Where I have to deal with what could have been and what is.” YES. And it hits out of the blue sometimes.

    Sending you hugs and love.

  9. “And, quite honestly, it’s a lot of random pangs of sadness for me. I’m not a sad person and my kids aren’t to be pitied. They are happy and are going to have great lives. There just are times where I’m sad that it’s not the lives I had planned for them. Where I have to deal with what could have been and what is … The weight I carry that I’m not quite sure how to take off, or if that’s even possible. And I know well that this isn’t about me. That some might see this ache as selfish, which is fine. It’s real, and something that I have to deal with, too.”

    Wow, you are actually a mind-reader or an empath or something. What you said. Exactly. Except written down and not spinning around my brain wrapped in a guilt pita wrap to hold it all together.

    *thank you*
    Karen

  10. I can totally relate to this bittersweet journey. When we adopted a little boy with special needs, I thought it’d be old hat to us, since my daughter has DS. Boy, was I wrong! It’s a steep learning curve trying to rearrange our family for 2 needy littles with what seems like opposite problems most days. Becca is easily overstimulated, needs predictability and a lot of structure. Sebastian is extremely hyperactive, sensory seeking and needs constant stimulation – also, he’s adopted so we’re working of attachment which is exhausting. Silly me, I thought it would be seperate challenges to overcome, but it’s really about a new dynamic and the sheer workload of it all.

    It’s clear you have embraced your new kind of crazy-busy life and are flourishing. And that is encouraging for me to hear too. Thanks.

  11. Chiming in to say that you are doing the best you can do! I have a kiddo with special needs and…oh, those first few years. She had a colostomy bag (bag of turds hanging off of her side) and I wanted to PUNCH IN THE THROAT those people who said, “at least you don’t have to deal with dirty diapers!”

  12. This resonated with me, especially this:

    “The weight I carry that I’m not quite sure how to take off, or if that’s even possible. And I know well that this isn’t about me. That some might see this ache as selfish, which is fine. It’s real, and something that I have to deal with, too.”

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s