Mother’s day came just a few days before Andy and I got married. I was expecting him to pick me up so we could go to church together, but I did not anticipate him arriving with a gift. I remember telling him, “But…I’m not a mother yet.” He replied that some day I would be, and I would be the mother of his children, so he thought that should be honored. He’s sweet that way… ♥

Being a mom was always on the tippity top of every to-do list I have had since childhood. I always thought that I would end up having more kiddos than two, but I feel blessed nonetheless. I could write my feelings about them into phrases that unfolded and sparkled like tender petals glazed in dew, but that would only limit the dimensions of emotions so richly felt. So I will leave it to simplicity to illustrate and say that my children taught me that every other emotion I thought to be love was a tepid shadow.

So here we are, mother’s day weekend fifteen years later, and I have been posting my writings on this blog four months now. If you reflect back on the topics you will no doubt notice that Tony’s challenges dominate the narratives. And yet, two children live here, and two children are deeply treasured here.

This mirrors what happens sometimes in the homes of families with a member who has more significant disabilities. We all know what it feels like to want an equal share of the time and attention of those around us, and ideally I think that is what each child should have from their parents. What you have read so far is probably casting some light on why that is not always possible. However, in real life the balance isn’t quite as skewed as it is on our blog, although I am also going to be honest with you and tell you there is no conceivable way we can make it equal at this time.

Even though the support Tony needs is generally quite extensive, I have been working as hard as I can for years to give Hannah as much of my time as I can. I always try to do the bulk of my therapy stuff with Tony when Hannah is at school, however there are innumerable, unavoidable ways his care impinges upon my ability to split my time between them fairly when she is at home with us. About the only way we can make sure our time together is uninterrupted is to wait until after Tony is in bed.

Currently, we spend half an hour alone together each night reading books. Sometimes though we do watch Studio C on you tube or Yu-gi-oh on Netflix. Some of the books we’ve gone through have been pretty cool- I particularly enjoyed “The Girl Who Drank the Moon,” by Kelly Barnhill. She really liked the Verity Gallant series we checked out from the library, and currently we’re working our way through the Harry Potter books. She did have to ask me to tone down my attempt at a British accent though 😉

I also bought a fancier tea set once upon a long time ago so that we could enjoy some herbal tea parties. This past Sunday we were enjoying one of her favorite flavors, “Caramel Apple Dream.” That particular blend is one of Celestial Seasonings winter holiday teas, but I found that you can order it directly from their website other times of the year. Occasionally we do puzzles together. She asked me to try and teach her to crochet the other night, and decided it wasn’t her thing. I told her that’s OK. We don’t need to adopt each other’s interests in order to love each other or enjoy time together, although I have somehow managed to pass on to her my love of Def Leppard and 80’s hair metal bands in general.

Andy also spends half an hour with Hannah each day. They usually watch cartoons, but they also like to watch Bob Ross together. On Saturdays they often make a fancier, treat like breakfast for themselves to go with Saturday morning cartoons, and sometimes they go out to IHOP.

Despite these efforts, I was just being really hard on myself about my inability to carve out more time for Hannah and pretty much torturing myself with this sense of failure and guilt. I know that Tony’s needs have changed how we are able to function in so many areas of our lives, and there are times where this has led to her missing out on experiences the way she wanted to have them.

So I started researching information for recommended amounts of time to spend with siblings of special needs kiddos to help preserve their sense of importance and being loved. I assumed my efforts had to be insufficient, and while my schedule already seemed hard to sustain, Hannah’s well-being is every bit as important to me so I wanted to make sure I was doing all I could.

I was a bit taken aback when everything I looked at indicated a goal time far less than what we have been doing. Everything. In that moment I realized I had to try and embrace the idea that I was doing better then I originally thought, even though it may not be everything I wish, and that I should probably stop emotionally flogging myself. That, I will tell you, is still very much a work in progress.

I read a blog post once about all of the positive ways being a sibling to a kiddo with special needs can enrich and beautify a person. I believe that is so, I see it in Hannah every day, and I try to focus on these positives as much as I can when I have those moments where I can’t give her equal focus the way I would like to. Because two children do live here, and two children are loved here.

I have attached a link to that blog post I mentioned above so that you can read it for yourself if you would like.

https://themighty.com/2014/12/a-letter-to-special-needs-siblings/