“I don’t want to carry gratitude in seasons. I want to carry it in my bones. I want it to rest on my tongue like it is a language that I never stop speaking.” -Arielle Estoria
I saw this quote the other night and it really resonated with me, especially with the holidays just around the corner! Yes, Thanksgiving is a wonderful time to celebrate all of the blessings in your life, and yes we all know we are of course just as thankful throughout the remainder of the year, but do we really focus on that gratitude outside of the holiday season? A lot of us do not. And what about when life has been particularly hard to us? How can we focus on gratitude when we feel like life has been unfairly cruel?
Having a special needs child has completely changed the way I celebrate gratitude. Madison is a constant reminder to be thankful. When you have watched your child fight for their life, and when they are left with needs in which people can’t tell you what to expect or how long you’ll have with them, every single day with that child becomes a blessing you are immeasurably thankful for. Every moment with her is a reason to be thankful because I truly don’t know what her future holds.
And special needs or not, the day to day of motherhood is HARD. There is no question about that. In fact, for many women their journey to motherhood is HARD. It doesn’t come easy to everyone. And when you’re longing for a family of your own, the holidays can be tough to bare.
When in the moment each day seems so hard, it can be difficult to be thankful. There are days when I just curse this universe for what it’s done to Madison and my family. How can I feel thankful when the daughter I’ve waited for my whole life was stolen from me at just 11 days old? And sometimes I let myself feel that way. I let myself have days where I’m angry and sad and that’s ok, because I have every right to be. That’s right mamas, you can be thankful AND be sad! We can be grateful AND be angry. We can feel all of our feelings, as long as we don’t let ourselves get stuck in the sad ones.
I have a lot of hard days as a special needs mama, but then I remember how much sadder I would be had Madison not survived. I think of all of the incredibly strong superhero parents that I’ve seen lose their children far too soon, and I know that I’m lucky I have this time with her. So even though I don’t always like this special needs journey I’m on, there are still things to be thankful for. There are still things all of us can be thankful for, even through the darkest times when it may not feel true.
Personally, I am thankful for my husband and his unconditional love and support. I could not get through life without him. I’m thankful for our family and friends who stand by us everyday, help us when we need, and simply check in on us to see how we’re doing. I’m thankful for the doctors, nurses, specialists, and therapists who saved Madison, who continue to make her care a priority, and who have helped her get to where she is today. I’m thankful for the other special needs mamas that I’ve connected with over the year. These mamas have helped me immensely in learning about new treatments or side effects, have given me stories of hope, and also been those I could vent to knowing I would not be judged because they are the only ones who truly know what I’m going through. It’s a tribe I never thought I’d be a part of, but I’m blessed to know so many incredibly strong women.
It’s important as mamas that we find our tribe and hold onto them. For some of us our community consists of family or friends. For others, a yoga class or coworkers. Hell, your community might be an online support group of women you don’t even know in person, it doesn’t matter! Let’s value those relationships ladies, and be thankful for the people in your life that make you smile and lift you up, even when you may not realize it.
Sometimes it’s hard to see how far Madison has actually come, but when I think back to last year I realize how much more fragile she was. It’s so easy to focus on the areas our children struggle, especially when your child’s developmental goals are things that come so easy to a healthy child, but we need to remember to celebrate the inchstones too. Any progress is better than no progress and is something to be thankful for. No matter what Madison is able to accomplish, you can bet I’ll be proud of her. We cannot compare our child’s accomplishments to another’s. Try not to stress on the missed milestones or areas your child is struggling. Take it from the mama of a medically complex babe, these things truly don’t matter! Celebrate their health. Celebrate the things they CAN do. Celebrate the fact that you have a child when so many women long to be mothers. Celebrate your child for exactly who they are and watch how much fuller your heart becomes.
Being on the special needs journey will mold you into a completely different person. I can’t tell you how many times people compliment me for my strength, but in all honesty, I have no other option but to be strong. Being an advocate for a medically complex child will make you more resilient, unafraid to speak your voice, smarter, more compassionate and understanding, and less judgmental. I have no time to worry about anything in life other than Madison and my family. Nothing else matters. And I’m thankful for this strength that has allowed me to think like that. It can be hard to be confident in our mothering abilities. We all wonder if we’re doing enough, even though most days it feels like we couldn’t possibly give any more. But trust me, you are enough. There is no one stronger than a mother. The days may be long and hard, but remember to be thankful for them; for they have made you the strong, badass woman you have become!
I’m also extremely thankful to have so many educational resources at my fingertips. With each diagnosis and with each failing medication, all I do is research what else I can do for Madison. What meds haven’t we tried that might work? What alternative treatments are available? What therapies have worked for others? I can’t imagine going through this journey in a country where the access to education and resources is limited. We’re lucky to be able to research and learn on our own and to have the ability to travel freely to esteemed medical professionals. Fertility struggles? Marriage problems? Addiction? The list goes on and on for the plethora of difficulties we might face, and yet there are so many resources available to help us through. Going through hard times can cloudy our want to be thankful, but it’s important to remember that we have resources to help pull us out, and that is a blessing in itself.
The pure chaos of motherhood may seem like something silly to be thankful for when it’s also the thing that drives us crazy, but trust me, it is. So your house is a mess? Be thankful to have a roof over your head. Be thankful your child is able to make that mess. It means they are learning and playing and figuring out this world, a joy that a mama of a disabled child, like me, would give anything for. So you’re juggling therapy and doctors appointments for your medically complex child? Be thankful you’re able to offer them care and opportunities to grow. So you’re balancing fertility appointments or childcare with work? Be thankful you have a job, a safe place to send your child, or the means to explore the wonderful advances science has to offer in helping you start or grow your family. The chaos, as exhausting as it might be, simply means we are living!
Let’s also remember that feeling grateful and being grateful are two different things. No one feels grateful for the bad things that happen to them, but despite those things, we can choose to BE grateful for the things we do have. Being forced into some really tough times has showed me not to take anything for granted, as I’ve seen firsthand how quickly life can change. When you learn that the things you love most can be taken away in an instant, you become immensely more thankful for them. My gratitude for the good times has also provided me hope and the will to keep going.
So as you sit with your loved ones this holiday season and reflect on how hard this year may have been, remember to instead focus on all that you DO have. There were moments and people and learnings and even your own bravery through these times, that you can and should be thankful for. Let us remember to be thankful every single day, and not just during the holidays. And above all, please be thankful for the health of yourself and your children. Not all mamas, like myself, are as lucky in that regard. Hold those babies close and I promise you, you’ll feel more reasons to be thankful than you ever imagined possible. Here’s to a wonderful holiday season mamas! We’ve got this!
Kelly Backiel is a wife, and SAHM to her daughter, Madison. Madison was diagnosed with meningitis at 11 days old, leaving her with severe brain injuries and complications. Kelly blogs about her experiences as a special needs mom, and hopes to spread awareness and support to others in similar situations. She is a fan of the beach, and a nice glass of wine! Read more about her here!