My Tribe

The day before Mother’s Day the Down syndrome Alliance of the Midlands hosted a Mom’s brunch. Over 60 women attended and it felt like a reunion with my closest friends. 

Without so much as a formal introduction, a woman and I started chatting about our daughters, just months apart. We had never met in person, but, thanks to Facebook, knew pretty much everything about the other’s daughter. As more women joined us at our table, the laughter and conversation flowed, and my soul got a boost of energy it so desperately needed. 

Then the inevitable happened. I noticed tissues being passed around. The “veterans” knew what was coming–the introductions and words of encouragement. Each of us was asked to share something they have learned on this journey, or wish they had known before starting their trip to Holland.

Some of my favorites are below. 

1. Your child will surprise you a million times over.

  • I cannot express this enough—our children are amazing. The earth shattering moment when we were told Claire had Down syndrome has been overshadowed by the joys she has given us. There are no limits to what this girl is capable of.

2. Laughter is the best medicine.

  • Guess what? It’s OKAY to laugh at your kid! Yes, AT, and of course with, your kid. Adam and I constantly call Claire our little “T-Rex” because of her short arms. One mom said her son reminded her of a drunk Keith Richards when he ran. Many moms laughed and nodded their heads in agreement over the amount of times their child just walked inside a neighbor’s house. If you can’t laugh about your life, you need to take a step back and start. Don’t we all laugh at our “typical” kids? It’s okay to laugh at our “different” kids too 🙂

3. It’s okay to be sad sometimes.

  • Yes, I’m strong. Yes, I can do hard things. But there are days when I am just sad. Sadness is also a part of this journey. It doesn’t make my love for Claire any less, but I have to own my emotions. Some days just suck. When I see a 6 month old crawling, or a 10 month old walking, I’m bummed. When I buy size 3-6 month shoes for her and they are still too big at 12 months old, I laugh, but I’m also sad. 

4. You are your child’s biggest advocate.

  • Clearly, I have a huge respect for doctors and modern medicine. That being said, I pissed off our pediatrician last week and couldn’t care less. The details are irrelevant, but I was passionate about something and wouldn’t budge. If Adam and I had listened to the surgeon when Sam was 11 months old he would have a fundoplication right now. We are the voice for our children, and our voice must be heard. 

5. Get connected and you will find your tribe.

  • Getting a packet from a geneticist titled ‘Down syndrome Alliance of the Midlands’ was the key to finding my “people.” I have been so fortunate to find an incredible support system and lifelong friends. We are all in this together: motherhood, advocacy, special needs… we are part of a secret society and we need one another. Facebook groups, love ‘em or leave ‘em, also led me to some amazing friendships. 

6. No one, NO ONE, has the life they envisioned.

  • Did I envision this insane life we lead? No. No one hopes to live hundreds of miles away from their family while raising 4 kids 5 and under, two with significant medical issues. No one hopes to one day be living paycheck to paycheck and drowning in medical bills. But guess what? I can’t name a single person who is living their “dream life.” Even my friends who have what appears to be the most perfect family have struggled and faced demons. Life is about growing and learning and laughing. The saying, “If you want to make God laugh, tell him about your plans,” is so accurate. Nothing in life is guaranteed, so making the most of the life we have is of paramount importance.

7. Don’t let the fears of tomorrow keep you from the joys of today.

  • Oh, how my heart and mind needed to hear this. The fears are constant, the future unknown, but that cannot keep us from enjoying our children in the present. I wish someone had slapped my hand away from my phone during the first few weeks of Claire’s life and told me to just appreciate my beautiful new baby girl and live in the moment. I will never get back the early days but I can stop worrying about the future. Her future is bright and my devotion unwavering.


One Comment Add yours

  1. kara says:

    Beautiful post, Trisha — so much wisdom packed into seven bullets. I’m so glad I discovered your blog. Thanks for sharing these universal truths. You are a beautiful writer.

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