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!!!

World Down Syndrome Day … 

Happy World Down Syndrome Day everyone! Down Syndrome is caused by the triplication of the 21st chromosome. That is why today, March 21st (3/21) was chosen as this global day of awareness. Pretty cool, huh?!?! Anyway, you all know that my youngest daughter, Reese, has Down Syndrome. This child is a GIFT! She is the sparkle in my eye. The smile on my face. The determination in my soul. And the joy in my heart! She teaches me every day to slow down and enjoy the moment. She is my fountain of youth! Today I celebrate her and others with Down Syndrome all over the world!

Well, I hope you all have a day where you love someone with extra parts!!!

Looking forward to a whole lotta fun …

Tomorrow is World Down Syndrome Day and I am absolutely excited! I’ve ordered blue iced cupcakes with yellow sprinkles for Reese’s class so that her friends can celebrate with her. After I drop her off at school in the morning I am running a virtual race with a friend of mine to promote Down Syndrome awareness. Later in the day we are attending a big event hosted by our local Down Syndrome Association at Downtown Disney. I even bought Reese and I matching leggings that have blue and yellow Down Syndrome awareness ribbons all over them. Oh. My. Gosh. It’s going to be such a great day!

Well, I hope you all have a day where you are looking forward to a whole lotta fun!!!

A day filled with wonder …

Reese is at a very inquisitive developmental stage. She asks “What’s that?” about EVERYTHING. I know that some of her questions are for comfort seeking. She may not understand something or hears something that frightens her, so I make sure that I take the time to tell her what everything is and assure her she has nothing to worry about. But aside from her need for reassurance there is this complete and utter curiosity that she has about her world that I find endearing. Her eyes are so expressive. They are the window to her mind and heart. I love watching her absorb new ideas and processing her thoughts. Reese shows me that there are still so many things to learn and that I should enjoy seeking new knowledge just like she does. Goodness, this little girl teaches me so many lessons. She is absolutely precious and I am blessed to be her mommy!

Well, I hope you all have a day that is filled with wonder!!!

She loves me and it was worth the wait …

Reese has never told me she loves me without me saying it to her first. When she says it in response back to being told “I love you”, instead of saying the word “love” she says the word “heart”. “Heart you”, if you want to get technical. It’s adorable.

I have mentioned before that Reese’s biggest delay are her oral motor skills. Don’t get me wrong, she gets her point across, one way or another. She signs, approximates words and uses visual cues to help express herself. But she still doesn’t talk a lot and when she does talk she is very hard to understand. She’s been in speech therapy for years. It’s just all coming together very slowly for her. But thankfully she continues to make progress.

Reese also doesn’t initiate a lot of conversations unless she wants or needs something. She communicates with you if you start the conversation, but again, it’s rare for her to just say something without prompting. Yet, last night she surprised me.

Reese and I were just quietly relaxing on the couch when she looked at me and made a heart shape with both her little hands. Then she pointed at me and said “YOU!”

I was stunned.

It was precious and beautiful. It was something I have wanted for years now. And it came so randomly and without prompting. It was genuine. And it was perfect. Exactly on her time, as I would want it no other way.

Well, I hope you all have a day where it was worth the wait!!!

Celebrating and praying … 

I post these words every year. I simply cannot bring myself 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. It is 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.

Seven 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!!!