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.
I try to keep things positive, but in all honesty, I despise this syndrome. I hate it more than I’ve hated anything. I hate that Logan has to deal with all of the hardships that comes with it, that she is not experiencing a fun and carefree life like kids her age, and I hate the limit it puts on our family.
Her constant GI struggles (I’m talking serious constipation and painful bloating here) and her inability to be independent are what really gets to me. The constant guessing of what is bothering her, or what she wants all throughout the day are maddening and exhausting for not only her, but all of us. 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% of the time only I know this. This puts such a limit on what we can do as a family, and it is usually me that stays behind with her. I can go on and on about what I feel we are missing out on, but doing that puts me in a dark place. Not for myself, but for what I feel the boys are missing out on. In a way, we don’t have our freedom. Logan doesn’t have her freedom.
I hate the countless hours I’ve spent 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 hate the tears I’ve cried in the middle of the night worrying about her future and all of the “what if’s” if something were to happen to me, or David. Ok, that takes me to a darker place than the missing out on life part for sure. 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 super 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.
I just hate this syndrome, and am always praying it will just go away.
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’s” of being a part of this day is them.
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 takes things for granted. She is an angel sent from above. If God were to ask me if I wanted a child with a disability like Pitt Hopkins, I would not hesitate to say no thank you. If He 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 much as I hate being 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 special needs kids. It’s not easy for them either, but man, these siblings are a force to be reckoned with. Talk about angels on earth!
Don’t get annoyed with the constant social media posts, or the what may seem 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 this whole black cloud to just go away. What got us included in awareness day truly sucks, but the little girl who brought us here is simply amazing.
If you’d like to be part of the cure, you can do so HERE!
14 thoughts on “The Bittersweet Awareness Day”
Beautiful! My 3 year old granddaughter, Kadence, was diagnosed with PTHS last October. We live in SC. My daughter is a single mother who amazes me every single day with her love and patience. Our sweet Kadence brings so much happiness to our lives but watching her struggles hasn’t been easy.
I just want to say, the parents who care for these precious children are so very special. I pray for all of you and the journey ahead. Thank you for sharing such real and raw emotions. Your daughter is beautiful and I love that you share her with all of us!
Oh, Kadence is such a beauty (like her mom, AND grandma)! We must meet up sometime soon!
Beautiful Brooke. Thank you for writing and sharing. I hate it too. Always have, always will. Which is why we will never stop fighting.
We never will stop either. Thank you for starting the foundation and never taking no for an answer…without you we all would be lost.
Sweet Brooke, your raw honesty is so powerful- we love you guys and want to be there to help out on the tough days. Thank you so much for sharing.
Thank you, Jenny. You all have done so much and have been Logan’s biggest supporters in every way. We love you!
I have a 5 years old daughter with PTHS. I can feel every word… Thank you.
You have such a gift with expressing the feelings that so many of us feel but don’t know how to say. You are an amazing mom to Logan! Thanks for sharing!
Elaine(mom to Jonathan with pths)
Thank you for sharing your heart so honestly! Thank you for using this opportunity to make me and us all more “aware” in the best way.
What a bittersweet day for sure! Know that there are families near and far who are praying for you and celebrating joys with you as well. I have a cousin who lives in SC, and her son, Jonathan, has Pitt Hopkins. Jonathan’s parents are simply amazing, but I know that they experience the highs and the lows of this disease that your wrote about. Like your Logan, Jonathan adds so much to our family! I simply couldn’t imagine life without his beautiful smile and willingness to give a high five!
Celebrate your day! And know that we are praying for you…
Thank you! We appreciate every single prayer.
To Brooke, precious little Logan and your sweet family,
We’ve never met but my family simply adores the Bomar-Harris crew and I want you to know you are all being prayed for and prayed over with such intention❤️ As a fellow mama of a child with a rare (autoimmune) disease, I know the absolute roller coaster of emotions you speak of. The nights of sobbing uncontrollably, the countless hours of googling and Facebook group posting and chasing down diagnoses—and the willingness to try absolutely anything diet- or natural remedy-wise (hello, CBD oil) if even one person says it works. The questioning “God, WHY us???” followed by the guilt of feeling faithless. I had tears rolling down my cheeks as I read your original post because, like y’all, our first big break came about through absolute, undeniable divine intervention. My mama’s instinct would not let up and I knew we needed to see a specialist but I had no clue where to begin. Then in one single day, 2 different, unacquainted friends from 2 different states reached out to me with the same name. Both then called and texted this poor doctor relentlessly until she actually called me and said, “I’ve got a lot of people coming at me from a lot of different directions. Someone is looking out for you.” We got in with the specialist the next day and then discovered that we were neighbors! I knew then and there that although God did not bring this disease upon my son, He sure was going to lead us through it!!!
I, too, struggle with the bitter/sweet feelings of sadness over the loss of his carefree childhood and empowerment that we are now part of a community of affected families who could affect real change for these children. No matter where I’m at on any given day, God’s got this. Be kind to yourself, feed your soul and hold this verse close to your heart:
“A bruised reed He will not break;
A dimly burning wick He will not extinguish…”
Sending much love and prayers your way,
Taylor, your story gave me chills! Isn’t is amazing how things unfold?! I’m sorry you have the same fears and challenges. I’d love to meet one day! Thank you for that verse…it is extremely comforting, and one I will for sure hold on to. Sending love and prayers your way as well.
So beautifully written, Brooke! Although we’re far, I hope you know that we’re always here to help in any way possible. We love you and are so proud of your family.
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