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Why Pitt-Hopkins Awareness Day Feels Bittersweet for Our Family

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These days there is an awareness day for just about everything. It is awesome, but very bittersweet for us. September 18th is Pitt-Hopkins Awareness Day, and as much as I love our new extended family, I wish we were not a part of this day.

The Bitter:

I try to keep things positive, but in all honesty, I despise this syndrome. I hate that Logan has to deal with all of the hardships that come with it, that she is not experiencing a fun and care-free life like most kids her age, and I hate the limits that Pitt-Hopkins can put on our family.

Her constant, severe GI episodes really get to me – it’s hard to watch her struggle. The constant guessing of what is bothering her, or trying to understand what she wants all throughout the day is exhausting for not only her, but all of us at times. Thankfully, she is getting better and better with her Tobii, and I feel like I know what she needs, and know what her cries and noises mean, but 90 percent of the time only I know this. I can go on and on about what I feel we all are missing out on as a family unit, but doing that puts me in a dark place. Having a rare disease limits our family’s freedom, especially Logan’s.

I have spent countless hours researching therapies, medications, natural remedies, products that cost more than a car, IEPs, and so much more that I didn’t even know existed. I’ve cried tears in the middle of the night worrying about her future and all of the “what ifs” if something were to happen to me, or my husband. This takes me to an even darker place than the missing out on life. I hate that this has tested my faith over and over again.

I hate that she doesn’t qualify for extra help or services, and I hate asking for any help. I also feel extremely uncomfortable asking for donations for our fundraisers, and am grateful to each and every one who has donated and does so time after time. You are what gives us hope.

Which brings me to…

The Sweet:

I think awareness day is felt mostly within the community of families. In our small community, the months leading up to September 18th are filled with gathering pictures, quotes and accomplishments of our kids to share with the world. People are supporting fundraisers put on by other families, are encouraging each other through the good and bad, and it just seems more positive.

We are trying to make the world see our kids through our eyes, not through their disability. Without these amazing families, I would be lost. These moms (and dads) have taught me more than any doctor, have shown me how to be fierce and to not back down, ever. They’ve been my lighthouse and sounding board. They get our life and our struggles, and get just as excited as we do when Logan does something that would seem so small to a “typical” family. So one of the biggest “sweet” parts of this day is these families.

And then there is Logan. The sweetest of them all. Without her, we would not know these incredible families, we would not know the beauty in the smallest of things, we would not fully understand or feel unconditional love, and we wouldn’t be “us.” We no longer take things for granted. She is an angel sent from above. If God were to ask me if I wanted a beautiful little girl who would show me love over and over again, would make me see that anything is possible — a little girl who has the sweetest smile and most infectious laugh with the kindest eyes, I would not hesitate to say yes.

I would choose her over and over again, even knowing about the syndrome and hardships we all would face.

She fills my heart in a way that I cannot explain, and one that I will never give up on.

She is the reason why I don’t give up, and why I don’t hide on this day.

As emotionally difficult as it is to be a part of this awareness day, I love being a part of it for her. I love being a part of her.

So my advice to those who do not “celebrate” an awareness day personally…

Surround them with love. Call, text, “like” one of their posts…whatever you can do to show you are thinking of them. A dear friend of mine, Tracy, once dropped off flowers at my door with a sweet note on our awareness day. It was amazing not only that she remembered what was happening that day, but that she wanted us to feel loved and not alone. This was a big gesture, but any gesture would do.

Talk to your kids about it. Explain what makes people different, and how they can be a friend to anyone. When you start looking with your heart, you see much more than your eyes. Also talk about the siblings of kids with disabilities. It’s not easy for them either, but man, these siblings are a force to be reckoned with – to me, they are angels on earth.

Understand why we’re posting so much to social media, or may be asking for what seems like a never-ending request for donations. If your child was in their place, nothing would stop you. Plus, would you rather read about an incredible human being, or read another political rant from either side?

Don’t give up on these families! Their awareness day is a good day to remember this. We are constantly changing plans, canceling, responding at the very last minute (or days later!) and may seem to have turned into hermits at times. We are just surviving the best we know how. We still love you and want to hang out and be included, and we want to celebrate you and your kids! Don’t hold back on telling us exciting news or accomplishments from your children. We are truly happy for you all.

One day I hope that we won’t have to have such an intense awareness day. I pray for a cure, and for these dark clouds to just go away. While being affected by Pitt-Hopkins and having to raise awareness for a rare condition is less than ideal, the little girl who brought us here is simply amazing.

the author's daughter, Logan

This story originally appeared on Logan’s Luxuries

Originally published: June 10, 2019
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