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!!!

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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!!!

A glimmer of hope and a Joe’s O …

I’ve mentioned before that Reese’s biggest delay is in her oral motor development. One significant issue we have is that she doesn’t chew. Despite years of therapy and trying to teach her how nothing has “turned-on” that ability for her. Nothing. And no amounting of testing, evaluations and specialists can tell us why. So I purée, mash and grind all her food. She’s a great eater but she is choking hazard. And that’s just scary. Really, really scary.

As a parent, you do what you have to do. Therapy, puréeing, whatever. If your child has a special need, you just meet it. You change and do what you have to do to help your child thrive. The changes soon become part of your daily activities and a part of your normal routine. But in addition to these adaptions a slow disappearance of hope occurs too. You start to forget what you had originally wanted for your child. You mourn and move on.

Until this morning I wasn’t even aware of the amount of hope I had lost in this area of Reese’s development. We have adapted well to her limits and her nutritional needs are met quiet well if I do say so myself. Let’s be honest, it was no coincidence that I chose to become a certified nutrition and wellness consultant. I’ve always loved nutrition but my Reese was a huge motivator for me to get my certification.

Anyway, I say that I “realized” all this this morning because twice today Reese picked up 1/4 size pieces of Trader Joe’s Os and put them in her mouth. She needed help getting them to her molars to “chew” them but she totally got the concept. WHOA. This is HUGE.

And IT all came flooding back to me. The hope and dreams I have for my little girl.

Perhaps I’m being selfish but I also want those things for me too. Simple things that parents don’t think twice about are things that Reese and I have never experienced together. I have never seen my daughter delight in eating her birthday cake. I have never seen a smile come across her face when she was given her favorite cookie. And I’ve never not worried that she would choke if I wasn’t there to meticulously monitor her food intake. Yes, I selfishly want all that … for her.

Well, I hope you all have a day where you are given a glimmer of hope!!!

A chocolate chip …

I have mentioned before these Reese’s biggest delays are in her oral motor development. It’s common among people with Down Syndrome and speech therapy works wonders for them. Reese still only speaks minimally and when she does speak she is often hard to understand. Her family, teachers and caregivers understand her but most everyone else would have a difficult time. This means I have to trust that the people I leave her with will take the time and make the effort to figure out what she needs when she is distressed. Reese also does not chew. She is a choking hazard. All day, every day. Awake or asleep. If this isn’t enough to keep a mother from ever sleeping soundly at night, I don’t know what is. Again. I must trust the people I leave her with to make sure she is safe. That she is watched around food at all times. And that she isn’t forced to eat something that she can’t. It’s terrifying to think of the consequences. Terrifying. Especially on days when I go to clean out her lunchbox and find a chocolate chip.

A chocolate chip.

To most of us when we see a chocolate chip we think YUM. Or SWEET. Or COOKIE. And I admit, I am one of those people.

But Reese, is not.

To her, an innocent chocolate chip is something that could potentially harm her. It is anxiety provoking. It is not a treat. It is a threat to her well-being.

I don’t normally focus on Reese’s delays. To me she is developing just the way God intended. She is capable. She is smart. She is loving. And so so silly. I think she teaches me more than I teach her. She reminds me to slow down. To stay in the moment. That life is precious. Every. Moment. She is a gift. She is a joy. MY JOY. And I love her fiercely. 

Whether you have a typical child or a child with special needs, parenting is not for the faint of heart. There are days when I feel like a warrior for my children. I would walk through fire for them. Literally. Loving them has given me a strength I never knew I had. An invincibility and fearlessness allowing me to protect them against any concern that comes their way. And yet, there are those days when I find myself reduced to tears by a single chocolate chip.

Well, I hope you all have a day where you don’t worry!!!