Grateful to be a part of something special …

Yesterday Reese participated in the Special Olympics Regional Games Track and Field events. This is her second year as an Special Olympics athlete. I can’t imagine that there will ever come a time when I’ll get used to how incredible these events are. If you have ever questioned the value of Special Olympics, I encourage you to attend. The joy and pride I have seen on these athletes faces is absolutely life changing. These are the REALEST of moments and the most GENUINENESS of feelings I have ever witnessed. I can’t help but be moved to tears by this level of beautiful humanness. Thank you Special Olympics! To encourage, to help and to give another human being the opportunity to DO and ACCOMPLISH great things, is nothing less than heroic.

Well, I hope you all have a day where you are grateful to be a part of something special!!!

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The bigger picture …

This is a LONG ONE but it’s about Reese, my 9 year old daughter with Down Syndrome, and since I am her voice I felt it was time to write this all out. So please read with an open heart and mind. This is for the benefit of someone I love more than anything.

We had a situation today and I just want to share a glimpse of the BIGGER picture that sometimes gets overlooked. Reese is scared of animals. She never was, then one day, she decided NO THANK YOU. She never had a bad or scary experience. One day, developmentally, they just became scary. And that is OK. I am confident that one day she will learn to love domesticated animals again. I don’t care if she ever likes wild animals, they can certainly be avoided.

But let’s get back to domesticated animals, specifically dogs. I would absolutely love for Reese’s fears about dogs to fade away. And here’s why: I want Reese to have the benefit of a service dog one day. They can be so specifically trained that she could one day have a furry companion who helps her with her nutritional needs. AND they could help her to live independently.

Now, let me share my experience with dog owners. They absolutely love their dogs, AS THEY SHOULD! Almost every person I know who has a dog, or anyone I have casually come into contact with who has a dog, believes that their dog is “the sweetest” dog ever. This may, in fact, be true. But to Reese, they are all ferocious beasts. Telling her (and I) how good your dog is, isn’t going to change her mind about any of it. Hopefully time will. And most importantly, HER time will. I truly believe that every person who tries to sway her thinking only does so with good intentions. But it’s actually harmful. Forcing it will only delay or deny giving her the benefits of having a service dog one day. And that is why I wrote all of this down. Please don’t “push” a relationship with your adorable, loving and gentle pet on anyone, child or adult. It is disrespectful at its core and you truly don’t know the damage that can happen if you do. For Reese, and other people with disabilities, it could be a huge factor in hindering their ability to one day live independently. When Reese is ready, I want her to be able to feel the joy of having a loving and loyal pet. That day will only come if her fears and feelings are respected now. Thanks for reading.

Well, I hope you all have a day where you see the bigger picture!!!

Happily interrupted by the Sunday snuggle factor …

I forgot to factor something into my Sunday morning. It wasn’t a guarantee being so early so I proceeded with my plan. I wanted to wake up before everyone else, do some yoga and some serious stretching and then go for a short run. I don’t normally run on Sunday but I felt I needed it. I thought it was all A GO, but then my favorite 9 year old, who went to sleep really early last night, woke up. I know that Reese is mine, but there is absolutely nothing sweeter than seeing this messy-haired, tired-eyed peanut drag all of her favorite blankets (there are three of them now) and her heavy rice-stuffed lamb, Kellie, into my room to cuddle. My world stops for her. I don’t even know how to not stop it. It just happens naturally and all of my heart and intentions turn to her. Nothing else seems more important. Nothing.

Well, I hope you all have a day where your plans get happily interrupted!!!

Celebrate EXTRA …

Happy World Down Syndrome Day everyone!

March 21 was designated as a global day of awareness that has been officially observed by the United Nations since 2012. This date was chosen to represent the triplication of the 21st chromosome (3/21) found in individuals with Down Syndrome. As you all know, my daughter Reese has Down Syndrome and she is the most amazing human being that I know. She is strong, smart and beautiful. Anyone who knows Reese will say that she makes the world a lighter and brighter place. Seriously you guys, she is THE BEST. I am truly blessed that God chose me to be her mom!

Well, I hope you all have a day where you celebrate EXTRA!!!

EXTRAordinary human …

Last week I mentioned that there was a project that I had been working on. Well, I can share it now! I had the privilege of being part of a video for Voices for the Voiceless that was released for World Down Syndrome Day! The video was posted to social media today and it shares various stories about the experience myself and other moms had upon learning that we would have a child with Down Syndrome. Sadly, many of us had a less than pleasant experience with medical professionals and faced people who suggested that we abort our precious babes. For the record, no mother should ever have to defend the value of her child’s life! I encourage you all to watch the video and feel free to ask me any questions. If you haven’t noticed I absolutely love sharing about Reese and our very special world. Also, tomorrow is World Down Syndrome Day and as you all know Reese is my hero! So we will be celebrating HUGE!

Well, I hope you all have a day where you love an EXTRAordinary human!!! https://youtu.be/okgcAn4uIEA

Finding out who you are …

Over the weekend I found myself at Urgent Care with Reese. Saturday night she presented with some signs and symptoms that seemed vaguely familiar to me. After putting all the pieces together, it hit me like a ton of bricks. Reese has a hernia. Sure enough, my suspicions where right. She was diagnosed with an abdominal hernia, and after seeing her pediatrician yesterday, they suspect that she may also have a small ulcer from stomach acid and the stress she experienced from vomiting so much. This makes everything she has been through the past few weeks finally make sense to me. Which thankfully brings me a lot of peace of mind. Not knowing was very upsetting. But with the learning of this kind of information, actions must follow. This is when being a social worker, with a boatload of medical experience, and a mom all seem to come together perfectly. Or so, this is my hope.

If you ask most people who know me, they will say that I’m a pretty happy and excitable person. But when it comes to stressful situations, I’m calm. Unusually calm. So calm that it often angers my children. They think I’m too “matter-of-fact” sometimes. But I honestly, can’t help it. Usually when I’m presented with a fairly stressful situation I consider the information I am given with objectivity and discernment. I look at all of the facts, tap into my existing knowledge on the topic, research any questions that I may have, develop a plan and go from there. This whole process gives me a feeling of control over seemingly out of control situations. This also pairs nicely with a promise that I made with myself long ago as a way of dealing with some anxiety that I was experiencing. I don’t worry about ANYTHING unless it is literally sitting on a plate in front of me. The bottom line is, for the most part, I can remain rational when most people can’t. But I will tell you that as a parent, having dealt my children’s health issues in the past and as of present, this can become hard. REAL HARD. I am thankful that I can boast a pretty successful track record of “pulling it together” … so far.

I admit that in the past few weeks I have been emotional regarding Reese’s health. Her symptoms have been concerning and I was presented with no solid answers to why she was experiencing them. Well, we had some, but my mama’s instinct said that there was more. And there was. But that period of unknowing really unnerved me. Thankfully, we now know what we are dealing with. And even better, it’s fixable. THANK YOU GOD.

So now it’s time for action and THIS what I’m good at. THIS I can handle.

Today we see the surgeon. It is all happening much faster than I expected. I’ve already done a ton of research on treatment plans and I feel ready for this meeting. Finally KNOWING the UNKNOWN I feel confident again. I want my daughter pain-free, symptom-free and restored to her happy healthy active self. I know that these goals will keep me focused, grounded and driven. And that feels good.

When I earned my MSW in 1995 it was YEARS before Reese was even a thought in my head. Yet it is through her that I have a complete understanding of my being. You see, God knew she was coming. Gracefully and purposely He molded me into exactly what Reese would need to live her best life. He educated me through books and life and love to turn me into the mommy I am today. A mommy full of crazy fierce protective unconditional love for this incredible little girl who has so much to teach the world. Today that mommy and the social worker in me collide (again) and I get the privilege of doing my life’s calling, my purpose, for her. For this amazingly beautiful little soul that God has gifted me with to raise and to love. I can’t help be but humbled by His trust. And grateful. So. So. Grateful.

Well, I hope you all have a day where you find out who you are!!!

Changed for the better …

Last night was the 40th Year Celebration of our local Down Syndrome Association. It was wonderful! I have been blessed to serve as the facilitator for one of their support groups for almost 7 years now. The event could not have been more perfect. The venue was lovely, the entertainment was fantastic, the food was tasty and the guests were simply amazing. It was a great evening connecting with old friends (and making some new ones) and celebrating the organization that has so positively and profoundly impacted our lives. What an accomplishment it is to serve a community of people with such dedication and diligence for four decades. It literally brought me to tears last night. I am truly grateful to have shared in DSAOC’s incredible history both as a client and as a facilitator.

When I was pregnant with Reese and found out that she had Down Syndrome I never shed a tear. Reese was going to be who God created her to be and I was the woman He chose to make sure it happened. I promised Reese that I would always be the mommy that she needed me to be. And that I would make sure that she would become who God intended her to be. Even as a social worker, at the time, I wasn’t quite sure what that all would look like. But I knew that I loved my daughter fiercely and that I would somehow figure it all out. DSAOC helped me do exactly that and I simply couldn’t be more thankful. Without a doubt, I would not be the person, or mommy, I am today without their influence on my life.

Well, I hope you all have a day where you are changed for the better!!!