“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.”
Happy Thanksgiving! I saw this quote the other night and it really resonated with me. 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.
Having a special needs child however has completely changed the way both John and 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, every single day with that child becomes a blessing you are immeasurably thankful for. Every moment with her is a reason for us to be thankful because we truly don’t know what her future holds. And there was a chance that we may not have been able to have any of these days with her, hard or not.
Ironically last year on Thanksgiving, Madison had her first seizure post meningitis. We had gone for an EEG just 2 weeks prior that showed no seizures, but lots of irregular activity. Then bam, Thanksgiving night she had her first one. She started having clusters of seizures everyday after that and about 2 weeks later she was diagnosed with infantile spasms, which we’ve been trying to get under control ever since.
When every day is 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 our 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 not thankful, I’m angry and sad and that’s ok, because I have every right to be. 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.
I remember that 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 who have helped me immensely in learning about new treatments, side effects, have given stories of hope, and also been those I could vent every thought and feeling 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.
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.
Being on this 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.
My strength in faith has also grown. Now don’t get me wrong, I have my days where I question why God put us on this path. I have a lot of those days honestly. And I don’t think I’ll ever understand it. But, I look to God more than I ever have before. I don’t think I could get through the hard days without prayer; without believing that it will be okay. And so I’m thankful my parents enforced the importance of faith in us growing up.
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 live so close or be able to travel freely to esteemed medical professionals.
So as you sit with your families tomorrow and begin to reflect on everything you are grateful for, please remember to be thankful for all of the little things, no matter how hard this past year may have been for you. Remember to be thankful everyday, and not just during the holidays. And above all, be thankful for the health of you and your children. God bless & wishing you all a happy, and healthy year!
“Give thanks in all circumstances; for this is God’s will for you in Jesus Christ.” 1 Thessalonians 5:18