Honoring heroes …

Today Reese’s school had a Veterans’ Day Ceremony and all the Girl and Boy Scouts participated. Reese is a new Brownie so today was a BIG deal. OK, I think I was way more excited than she was, HA! Anyway, Reese got to be one of the flag carriers. And she did GREAT! Now, I know she’s my kid, but goodness this little girl could not have been cuter and her mom couldn’t have been prouder. I was thrilled that she got to participate in something so meaningful.

Well, I hope you all have day where you honor your heroes!!!

Advertisements

Run your little heart out …

Today is Reese’s school Jog-a-Thon and she was SO EXCITED this morning. My little peanut loves to run. Which of course makes me incredibly happy. We haven’t done any formal training yet but when I see her run she has THAT look. To call it “freedom” is an understatement. To call it “joyful” doesn’t seem like nearly enough. It’s just so much more. I bought Reese new running shoes yesterday and this morning before we put them on her she stood next to them and started running in place. I totally GOT it. Yup, running. When it has you, you know it … and it feels incredible.

Well, I hope you all have a day where you run your little heart out!!!

The lucky few …

Today was The Down Syndrome Association of Orange County’s BUDDY WALK 2017. And I absolutely love this day. Nine years ago I had no idea that in just a few months my life would be filled with new people who would change me for the better. People who would unknowingly become some of my greatest heroes. People who I would cry with and celebrate with. People who would so generously trust me to share in their lives. And people who would lovingly share in mine. Yet, here I am. This event is so much more to me than just a fun fundraiser. It’s a collectivity of people I have come to know and respect. Many of whom I had the privilege of meeting just days into their introduction to Down Syndrome. They have blessed me so much. I can’t hold the tears back at this event. I love these families. I love being one of them. And I love this organization and its’ mission. There is a moment at each Buddy Walk that I take for myself. I look out across the stadium and see the crowd that has gathered. It is beautiful. At this event I’m not just the facilitator of our Circle or Friends group, I am part of an incredible community of human beings who understand the gift we have all been given. I am honored and humbled that God chose me for this. And I will always be grateful to stand in the presence of these warrior souls who are all just a little more tender, fight just a little bit harder and love a whole lot deeper than anyone I’ve ever met before.

Well, I hope you all have a day where you are part of the lucky few!!!

Celebrating my greatest heroes …

October is both Down Syndrome Awareness Month and Breast Cancer Awareness Month. Needless to say, it’s a huge month around our house.

Well, I hope you all have a month where you celebrate your greatest heroes!!!

Girl Scouts …

I took Reese to a Girl Scout Open House this evening. I really wasn’t sure how it would go. Sometimes Reese can be very outgoing and sometimes she can be quite introverted. Being that this was her first day out of the house since she got sick, I really didn’t expect it to be well received. I figured it might not hold her interest or that it would be too overwhelming. I even told Libs, as we walked out the door, that we would be back in about an hour and a half … or 20 minutes. HA! Anyway, I wasn’t going to push it. I really wanted this to be Reese driven. I wanted her to chose it, not me.

And boy, did she!

Within two minutes of arriving a swarm of adorable little girls came to greet Reese. Soon thereafter they were holding hands and bringing her into the activity room. Reese was all smiles! When I went in to check on her, after I signed us in, I was greeted by a friend. I had no clue that she was a Girl Scout volunteer! The night was going great and my nerves were definitely being calmed. Having a child with Down Syndrome and special needs I often worry when we enter in to a new environment. Will people understand her speech? Will it be too loud for her? Will she be asked to eat something she can’t? It can be very stressful. But when I saw my friend there I was instantly put at ease. Phew! Not only that, I looked around to find Reese sitting in a circle with the other girls already participating in the activities! They had an older Girl Scout watching over Reese and giving her guidance. This momma was overjoyed! They were so helpful and accommodating! They didn’t bat an eye. They just jumped in and did all they could to help Reese fit right in. It was honestly beautiful. Reese had a ball with the girls and she was so proud of the bracelet that she made and the picture she colored. Needless to say, I signed Reese up for Girl Scouts tonight and I signed myself up as a volunteer. The leaders are working to find a local troop that will suit Reese best. Tonight couldn’t have gone smoother. And I couldn’t be more excited to see where this new journey takes her. Thanks Girl Scouts, thanks. You really know how to make people feel welcome, safe and included.

Well, I hope you all have a day where you become a Girl Scout!!!

A story about faith, love and believing in miracles …

I post these words every year. I don't think I will ever be able to change them. To do so would be an injustice to her. To me. And to all our family and friends who stood by us then and who continue to share this life with us now. This story is about our beginning together. It is a story of faith and love … and believing in miracles.

We were told when I was about 11 weeks pregnant 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 still born … 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 adamant and angry “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 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 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 who 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 on her own and with no hole in her heart. (Sure, she has 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.

Eight 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 … 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!!!

The lucky few …

I have written many times before that my youngest daughter, Reese, has Down Syndrome. I’ve also written about her biggest delays, which are in her oral motor development. Her speech is severely delayed. She also doesn’t chew her food. She has many food aversions because of it and really doesn’t understand the whole social part of eating. It is just a means to an end. Well, last night and this morning we had some HUGE break throughs!

HUGE. HUGE.

Last night we went to Dave and Buster’s and Reese picked up a menu and told me she wanted macaroni and cheese. She has NEVER done that before. She ate almost the entire bowl of mashed up mac and cheese and she drank their lemonade served in their cup. She asked to try all of our drinks too. Again, this NEVER happens. Not only THAT. When it came time to trade in her tickets she picked a Funko Pop Wonder Woman and … a piece of CANDY. It was all she could talk about! My kid, talking about CANDY! Say WHAT?!?! When we got home it was after midnight and she went straight to bed holding her Wonder Woman and CANDY. I assumed that she would soon forget about the candy and it would end up in the trash at some point.

NOPE.

When she woke up this morning she walked out of her room holding both. She immediately asked to eat her candy.

Candy for breakfast? Um. For this child to STILL be interested in candy THE NEXT DAY was HUGE. For her to ask to eat something knew, EVEN MORE HUGE. So, candy for breakfast? HECK FREAKING YEAH!

The candy was a little tricky for me because I didn’t actually understand what “Nerd Rope” was. My older kids didn’t eat a whole lot of stuff like this and I had never even heard of it before. Anyway, I broke it apart into tiny pieces and Reese immediately put a “Nerd” in her mouth ALL ON HER OWN! Then she tried the jelly-ish rope part thingy. She tried a few more pieces of both and really tried to CHEW. I was in SHOCK. I STILL AM! In about 12 hours of time Reese made more “feeding” progress than she EVER has. She appears to be making up for all the years of “kid food” that she missed too. HA and YIKES! But she is getting it! I am SO HAPPY! This is HUGE AND AWESOME! A dream come true and a MIRACLE! She has come so far. SO SO FAR.

Days like this I am reminded how good my life is. To find this much joy in something so simple makes me know just how much this little girl keeps me grounded and REAL. She is a blessing. I love how she has taught me to look at our lives and the world around us. There aren’t a lot of people who may understand us. Heck, some people might even feel bad for us. But I can you this with all sincerity. Viewing life with Down Syndrome goggles on leaves you with a beautiful perspective.

Well, I hope you all have a day where you are one of the lucky few!!!