Faith, love and miracles …

I know that this is the 10th year that I’ve been blessed to share this story, but I still cry like I wrote it yesterday. This story is about our beginning together. The story that we all fought so hard to tell. It is a story of faith, love and miracles.

When I was about 11 weeks pregnant we were told that she did not look quite so “typical” … I didn’t care. I loved our baby. And I prayed.

A few weeks later we were told, that not only was our baby “not typical”, but that there was a chance I would be delivering her stillborn. I wanted our baby even more fiercely than I had before. And I prayed.

Several weeks later, we almost lost our baby … to which I screamed an angry and adamant “NO!” And I prayed.

A month later we were told that our baby had a “very large hole in her heart” … to which I said, “I don’t believe you.“ And I prayed.

Two months later we were told, “Your baby is small” … to which I laughed and said, “Of all the things that you have told us, this seems pretty manageable.” And I prayed.

Two weeks later, on what was supposed to be a brief doctor’s visit before we headed to our local water park, we were told that our baby was not growing, that she was too small and that she was not acting the way that she should be. We were told that I would be given another amniocentesis to see if her lungs were developed. If they were, my doctor wanted to take her right away. I felt like my body was failing her. And I prayed.

My doctor gave me a drug to speed up our baby’s lung development. The results of the amniocentesis were not what we had hoped for. My doctor told us that our baby’s lungs were not developed, our baby could not breath on her own. Now we had a team of medical professionals. They hoped nothing would go wrong for the next 48 hours so that the steroid that they had given me would have time to help our baby’s lungs grow … to which I said, “OK”. And I prayed.

Less than 24 hours later I had a hospital room full of people wearing blue. They were running around and pumping my body full of fluids and drugs. We were told that we could no longer wait. We were told that our baby would not be breathing and that she would be very small and weak … to which I cried in her father’s arms and said, “I’m scared.” And I prayed.

Minutes later I was strapped to a table. I had refused anything that would alter my mental state. I wanted to be there for our baby. It took a long time to get her out. I was told that she was so small that she kept slipping through the doctor’s hands. I kept screaming, “Is she out?!?!” And I prayed.

Then, I heard a cry … to which I thought, “That is a loud cry for a baby who is supposed to be weak, small and not breathing.” And I prayed.

A few minutes later our baby was brought over to me, warmly swaddled, pink as could be, breathing all on her own and with no hole in her heart. (Sure, she had some extra chromosomes, but who cares about that?) And when I saw her I thought, “You are my miracle and I love you.” And then, I praised God for our beautiful daughter.

Ten years ago today, through God’s amazing grace, Reese Lindsey Grace was born by emergency cesarean section. She was 6 weeks early. She weighed 2lbs 15oz and was 15 ½ inches long. My world has not been quite the same since that day … and I would have it no other way.

Well, I hope you all have a day where you celebrate a miracle … and always remember to pray!!!

I’m back and happy about it …

I took a few months off from writing. Well, I guess I was still writing just not the way I usually do and I didn’t publish anything. It’s the longest break I’ve taken away from my blog since I started it. And although a break was much needed, I did miss it terribly. This blog has very much become a part of me. The daily hope and silliness I seek to write when I am “here” is so valuable to me. It’s a habit that is now hard to break. And that is very good thing.

This summer was all about possibilities, opportunities and change. So I guess I just felt I needed to give myself some time to feel it, figure it out and to grow with it. To put it mildly we have had A LOT going on over here. For starters, I took and completed an herbal apothecary class that I needed to keep up my Nutrition and Wellness Consultant Certification. I absolutely loved the class. I learned SO MUCH. I couldn’t wait to personally add and implement the things I learned into my lifestyle. It definitely took up a chunk of my time but it was well worth it!

We also had a busy summer getting my son, George, ready for his year abroad. He left for Europe a few weeks ago and he’s settled into his dorm now. He’s enjoying the language and cultural summer program he’s enrolled in and will start his university classes in a few weeks. He has made some nice friends and has been able to do some day trips already. I am so happy for him! But as wonderful as all of this is for him, it’s been really hard on this mama’s heart too. I miss him HUGE and the worry is like NO OTHER. But like I always say, there is nothing more beautiful than watching your child chase their dreams. BIG SIGH.

Our summer wasn’t going to be complete without a few visits from my oldest daughter, Sidney. Luckily she had some time before her summer classes started to hang out with us. She lives in the Bay Area full time now and when she visits it’s always a whirlwind. We pack so much in when she is here that it’s shocking. I need at least week to recover when she leaves, HA!

Anyway, we also took a few small local trips for fun and a big trip back East to do some college visits for Libs. That is another season that we are in … again. This is my third senior year as a mom. It’s a time filled with an abundance of heartbreaking LASTS and exciting FIRSTS. Libs has a lot on her plate with school, tennis and performances this next academic year. I hope that she enjoys this time and savors every moment. I know that I will. History reminds me that this will also be an incredibly busy and unpredictable season with the completion of college applications, acceptance letters and decisions to be made. It’s a roller coaster to say the least. Libs has worked hard (this may be the biggest understatement I’ve ever written) to open doors for herself. Now I put my faith in God to decide what doors He will allow her to walk through. As a mom I’m ready for whatever opportunities come her way and I trust that God’s plan for Lib’s future will be good and that she will end up exactly where she needs to be.

On top of all of that I had some big decisions to make this summer about Reese’s schooling. At times, schooling for my typical children was hard to maneuver through, but having a child with special needs, I find that I put a whole different level of pressure on myself. I am so worried about making a mistake. This little girl deserves the best. MY BEST. I am her voice and I am her advocate. Responsibilities that I do not take lightly. As a social worker I typically feel like I know my stuff. I confidently move forward with my decisions once I think I have finally done enough research and had enough meetings and consultations to make the best ones for her. It’s getting to that point that makes for a stressful process. It took months to work out, but plans are set for the next three years and I feel good about them. Thank god.

So between ALL of that, birthdays, holidays and LIFE, I felt that my focus was needed elsewhere. And a lot of elsewhere-s at that! But as usual I severely underestimated my need to write daily. Be it a brief blog entry or a long journal entry, I need it. Writing is the creative outlet that nurtures my brain and my heart equally. I forget how much I process my world and my experiences through writing. And along with running and yoga I find that it’s part of what keeps me happy, healthy, growing and thriving.

Well, I hope you all have a day where you are back doing what you love!!!

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!!!

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