Holidays With Specials - Adjusting Expectations

Holidays with Specials

Adjusting Expectations

With Thanksgiving just behind us and Christmas and New Years right around the corner, I can’t help but think of how different our holidays can be compared to the “traditional” family. I have always loved this season with so many holidays back-to-back. We decorate early for Christmas and Clover loves to help with it all. When she was little, she would carry around the baby Jesus from one of our Nativities and she is always so excited to put out all our decorations. I cherish the feelings these holidays invoke, the spirit of giving, love, and selflessness. I have tried to make our home a festive place that encourages those feelings as well. But things are different when you have a special needs child.

Our first winter/fall with Sage was harder than our previous years. After just a few months of our introduction into the Special Needs world, I thought I had started to come to terms with Sage’s multiple diagnoses, but the reality of what that meant for her really hit home that Christmas. When we were opening presents on Christmas morning, Clover had to open all the presents for Sage and show her each present. Sage wasn’t very interested, to be honest. I also remember it was a really rough seizure day for her which in turn put strain on the rest of us.

At that point she was 8 months old but was nowhere near doing what a typical 8-month-old could do. I remember the pang of not needing to worry about her getting into the presents to rip them open before Christmas, because she had no ability to even get to the tree…. When trying to figure out what gifts to even give her we had to consider that she wouldn’t really play with any of them independently. It was yet another reminder of all the things she couldn’t do, and it hurt. This year as well, we have had to get creative of what gifts to get her. Brandon recently said that we have over 2 years’ worth of baby toys, and most of those she still doesn’t play with much, if at all.

I really loved this post by my good friend whose daughter has PVNH. She wrote this on Thanksgiving 2023:

“Happy Thanksgiving 🦃

Shoutout to my medically fragile mama bears whose holidays look way different than their friends and family. We are handling seizures, meds, tube feeds like every other day, have hard time leaving home or have to pack the whole house to get out the door. Holidays are isolating and lonely at times. If you’re feeling down today, you’re not alone in your feelings💜 I am thankful for my support system and loved ones who come through and bring cooked meals, call (even when I am always unavailable), make me laugh through shot nerves and make my hard days feel less daunting.

I hope you all had a very happy thanksgiving. I am beyond thankful despite Elani being sick I got to enjoy a bunch of extra snuggles from both my babies all day.”

She said it so well! For those with Medically Complex kiddos, their conditions/ disorders don’t take a break for the holidays. For our family, personally, we still have to give meds, deal with multiple seizures (most likely) and navigate their after math. If we try to travel to see family, which is very rare these days, we need to bring extra equipment for Sage and navigating social situations when she has seizures can get uncomfortable for those who aren’t used to seeing them.

The expectations of what most people typically do on these holidays can be daunting for us, and we have learned that we have had to adjust our expectations of what our holidays look like. They have become a much more intimate affair.

I follow many special needs pages on Facebook, and it is encouraging to have people out there that I can completely relate to. One page that I feel has so much amazing insight into the Special Needs World is called Payton’s Path. They recently wrote this about Christmas:

“It’s December and Christmas is right around the corner.

Christmas has always been a hard holiday for me to swallow.

It’s the one that reminds me of what experiences the special needs life has stolen from me as a mother.

Does that sound selfish?

It might,

But it’s the truth.

While I have learned to adjust my expectations and make the holiday special for our family in our own way, I still despise it.

Hear me out, as special needs parents we are allowed to not accept everything we are given with grace.

We are allowed to be upset over having to constantly adjust our expectations from what we imagined.

We are allowed to be tired from gracefully accepting things that we could have once never imagined would be a part of lives.

I despise Christmas.

There, I said it.

I hate that we don’t write letters to Santa,

And that I don’t stay up late on Christmas Eve building toys.

I’m sad that I don’t wake up to excitement and chaos and wrapping paper flying,

And that trying to buy gifts makes me cry.

Yes, we will always make the holiday special in our own way,

But I’m allowed to hate that it isn’t what I dreamt of for my child, for our family.”

I can’t express how much this post resonated with me! I don’t hate Christmas, I actually still really enjoy it, but it can be hard how different our life is now than I had expected it to be. This time of year is a cruel reminder of how hard some parts of holidays can be; like visiting family has become that much harder, buying meaningful toys for Sage that isn’t just more of what she already has, or even just going to holiday parties can be overstimulating for all of us. Even with all the things we can’t do, there is still so much that I am thankful for.

Because of our circumstances, we have had to make our own family traditions with our little family rather than rely on our extended family. We have learned how to involve Clover even more with gift giving and she absolutely loves doing that for her little sister. I would be lying if I said I didn’t wish things were different. I wish both my girls could run giggling in Christmas morning to rip open presents, I wish there were two, not just one, who talked non-stop about all the things they want for Christmas. But life has given us a different hand. Instead, we have one talkative loving girl that still tries to involve her Special sister in all her play and loves to help in any way she can. And we have one Special Needs little girl that has taught us the importance of quality time, patience, and being there for each other in our times of need. We are the odd man out and have told Clover the truth about Santa from when she was really little, and this year she is so excited to “be Santa” for Sage. She gets to participate in being the gift giver and is so here for it. What a special thing for her to experience, where she gets to bring that Spirit of Christmas and share her excitement with her sister and the rest of our family.

We get a slow down when it comes to Sage during the holidays. We get to do things a bit slower and more purposefully. We spend a lot more time in our own home with just the 4 of us, which is actually pretty nice. It has helped us step back and really focus on the true meaning of Christmas. We talk about the Christmas Story and why we really celebrate Christmas. We talk about Jesus Christ and what a gift he was to the world, we get to celebrate his birthday this wonderful holiday and give gifts to each other to remember that HE was the ultimate gift.

I feel like there are a lot of expectations to get to every party and do all the festive things to make the Christmas season feel “special”, but we have learned that that is definitely not the case. We don’t make it to every party, or even any parties some years, and we try to do the festive things at home instead of having to get out to do them, like making cookies or watching Christmas movies. I make it a point to watch mainly Christmas shows all December to help bring that spirit into our home.

There is another Facebook page I’d like to share called Special Soul Mama and they shared another holiday post that hit home.

“It’s December.

Officially Christmas.

The start of this season, fills my insides with a mixture of joy, anxiety and sadness every year.

Joy for all that it is.

Anxious for what it might be.

And sadness for everything it isn’t.

Christmas’ gone by were easier when he was little. I mean, looking back, they were still exhausting for sure. But they still felt like Christmas and as each year comes and we take the lessons learned from last year and implement ‘easier’ into this year, it gets to be less Christmassy and more, samsies.

Christmas now, as a special needs family is completely different to what Christmas was prior to being a special needs family.

Christmas now is nothing like the Christmas I had as a kid.

Christmas now is nothing like before we had our kids.

Christmas now is nothing like when he was little or when his sister was little or even like the Christmas other special needs families show.

Christmas now, is completely different.

It’s not full of family. Or friends. And even the decorations can be too much for his change-disputing heart. The traditions of advent calendars, Santa photos and grandparents coming to stay have all slowly washed away as time’s gone by from the overwhelm they hold on him.

The gift giving is kept to a minimum. The routine stays stringently the same and there’s no relaxation or holiday time. Going places is hard with almost every place becoming overcrowded. And even staying home can be difficult, too.

There’s no drinking cheer or late night Christmas movie bingeing. And this year even, for fear of it being completely destroyed, we aren’t completely convinced we should even put up the Christmas tree.

There’s no dinner parties or bbq’s or even just afternoon catch ups with friends.

And in fact, when his last day of school rolls around next week, it’s not exactly the start of the ‘holiday’ season for us. It really means we knuckle down and work harder. Instead of getting the only break we ever get while he’s at school, we start a caring shift for 24 hours a day, 7 days a week.

And it’s our job, I know. I’m not complaining. I’m prepared and willing and I’m here for it and I’m even really grateful that he has school and we get that small “break” because I know, there are others that don’t even get that.

But Christmas, for us and for him, is somewhat similar to all our other days.

It doesn’t feel like Christmas time.

It really just feels like, another day.

And for my Christmas-loving, people-adoring and relax-wanting heart, that’s been hard to get used to.

I desperately want to have what everyone else is having. With all the Christmas glitter and trimmings and drunk uncle stories to tell.

But right now, and maybe for a long time or even for an ever time, it’s not for us.

Things are different now.

Right now, in our family’s season, it’s a little less festive, and just a little more, staying neutral.

And that’s okay.

It is.

If this life has taught me anything it’s that, we are different.

We don’t do anything the same as other families and trying to resist the acceptance of that, really does make things harder.

I’m not going to force Christmas into our home, I’m just going to go with what is. If we get to put up the tree and it lasts a day, so be it.

If we don’t get to drive our neighbourhood and look at Christmas lights because it’s not what feels right, so be it.

If no Christmas baking happens and if our gift giving is broken up into sections and even if it’s just us, so be it.

This year more than ever, is calling for the need to go with flow of it all and I really am okay with that.

Keep going dear Mama, I know this time of year is stressful and harder than usual, but just remember, we don’t have to try hard to make it what it isn’t. We do it differently.

And so be it. That’s ok.

Keep going.

I love you.

Love, Christine x Special Soul Mama”

 I really loved the part: Joy for all that it is. Anxious for what it might be. And sadness for everything it isn’t. It is completely okay to have all these feelings together. I am so thankful for this time of year and all the joy it truly brings me and my family. I do have a lot of anxiety about what our day to day could look like, some days are just hard and sometimes those hard days fall on Thanksgiving or Christmas or any other holiday. As I said above, having Special Needs kids you have to accept that their conditions/ disorders don’t take a break for the holidays and can often get even more triggered by the change in routine or environment. And finally, I do have sadness for the things that I feel Sage has to miss out on because of her physical disabilities, but we work hard to make sure she still gets all the experiences and happiness that comes with this time of year. I do also have sadness for what our family struggles to do because of our circumstances, but we make the most of what we are able to do and try to make things as special as possible.

Holidays with Special Needs children are definitely different than most, and we all have had to adjust our expectations of what we can do and what our kids can do. Sometimes we can be surprised at how well they adjust to certain situations, and we are able to do more the next year, but other times we need to follow their lead and pull back to a simpler holiday. The key to it all is following your child’s lead, they will tell us in their own way what they can or can’t handle. Don’t worry about what other people are doing this holiday season, there is no need do what other people are doing. It’s okay to change what we expect of ourselves and our kids, they are what should come first.

On the first day of Christmas, the good Lord gave to me: a child with special needs.

On the second day of Christmas, the good Lord gave to me: a heart full of love for my child with special needs.

On the third day of Christmas, the good Lord gave to me: an ache in my heart and a heart full of love for my child with special needs.

On the fourth day of Christmas, the good Lord gave to me: a tear in my eyes, an ache in my heart and a heart full of love for my child with special needs.

On the fifth day of Christmas, the good Lord gave to me: an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the sixth day of Christmas, the good Lord gave to me: a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the seventh day of Christmas, the good Lord gave to me: a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the eighth day of Christmas, the good Lord gave to me: supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the ninth day of Christmas, the good Lord gave to me: remarkable doctors &; therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in heart and my heart full of love for my child with a special needs.

On the tenth day of Christmas, the good Lord gave to me: an appreciation of small accomplishments, remarkable doctors &; therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the eleventh day of Christmas, the good Lord gave to me: a sense of pride and courage, an appreciation of small accomplishments, remarkable doctors &; therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the twelfth day of Christmas, the good Lord said to me: Reach out and share your sense of pride and courage, your appreciation of small accomplishments, your remarkable doctors &; therapists, your supportive friends, your sense of humor, your ray of hope, your unsuspected strength for the tear in your eyes and the ache in your heart and your heart full of love for your child with special needs.

Author: Noah's Miracle

I hope you all find ways to make this Christmas special for your family and those with Specials, I hope you find your special moments with your amazing sweet Special Needs kids. Merry Christmas 🎄