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!!!

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Enjoying life to the fullest …

I spent a lot of my 48th year recovering from an illness that I never thought I’d have to deal with again. I was wrong. Very, very wrong. And it really made me think.

I have always treasured life’s simple pleasures. I have made sure I have remained appreciative of both the large and small moments in my life. I hold on very loosely to material things as I know they are not what really matters. I believe that love and the people I share it with are the most important things in the world. I felt like I was doing life right. Then disaster hit. Again.

I really think that getting sick can be a way that God gets our attention. And I also believe that age old saying, ” What doesn’t kill you, makes you stronger”. So I felt the need to look long and hard at how both those things related to my second bout with meningitis. I’m not sure I have all the answers yet, or if I ever will. I’ve made peace with that. But I am very sure of one thing. God had more time planned for me and I’m not going to waste one second of it.

Well, I hope you all have a life that you enjoy to the fullest!!!

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!!!

Awake again …

Meningitis makes you tired. Very. It’s not just during the active part of the virus either. At least not for me. The two times I have had it the fatigue lasted a very long time. The first time it took me about 8 months for my family to really notice a difference. That’s a long time. And I think that must be my standard. Where I felt the heaviest of my fatigue pass in about April this, 6 months after I was diagnosed, my mornings remained very difficult.

I have ALWAYS been a morning person and for most of my life I’ve needed less sleep than is typical. But not since October. And it has been a hard adjustment. Don’t get me wrong, I am very pleased, as are all my doctors, with my recovery. I’ve done exceedingly well. I am beyond grateful. But the struggle I’ve faced waking up has been a real life changer. I decided sometime in May to make peace with it. It wasn’t what I wanted but I had to accept that the old me “morning me” may never return. I needed to forget about the woman who bounced out of bed in the morning before most people in her timezone ever woke up, HA! I needed to be thankful for all the extra hours God had so generously given me in the past to enjoy my day. I needed to move on and embrace the me that was left after surviving another of life’s battles. And I did. 

The came June. I’m needing less sleep and rising with a familiar energy that seems like I’ve found a long lost friend. I’m enjoying the silence of a sleeping home again. I’m working out earlier. I’m getting more accomplished throughout my day. I can’t say I’m 100% myself, but I am pretty darn close. And I really couldn’t be happier.

Well, I hope you all have a day where you feel AWAKE again!!!

Happily falling apart …

Most people who know me would say that I hold it together unusually well during times of stress and change. I deal with things straightforward. What’s on my plate that day, gets my effort and attention. When I was younger I was a worry wart. I was anxious about EVERYTHING. That all faded away. Now I save my efforts for the real stuff and even then I remain pretty calm. And optimistic. It drives my crew crazy sometimes. I think they want to see more “emotion” out of me. Trust me, I am one emotional woman. I’m a crier. I laugh at just about everything. And I’m usually the happiest person in the room. But when it comes to stressful situations or change I just gave up freaking out about them. It’s way easier to just deal with them. In a “matter-of-fact” kind of way I muddle through the tough times. I do make a TON of lists. They tend to keep me focused. Plus they are a great visual for me to measure my progress through the problem or situation I’m currently in the thick of.

Regardless of what I’ve been dealing with, when the day comes when I feel like I am finally passed it, I tend to fall apart. I’ll cry more, sleep like a rock and sometimes I get sick. It’s like my mind and body can finally let their defenses down. It’s funny. Even though this is when I feel like a mess, it’s also a time when I feel my strongest. It’s like earning another battle scar. And it’s a reminder that I am a survivor. Again.

Well, I hope you all have a day where you happily fall apart!!!

A BIG SIGH of relief …

I woke up this morning feeling something I hadn’t in a very long time. RELAXED. Sidney has been home from college for about a month now. George graduated from high school last night. Libs and Reese have their last day of school today. Our absolutely exhausting, unpredictable, and stressful school year is OVER. There were many times when I wondered if we were going to make it out of this one unscathed by our circumstances. It was a tough one. This past week one particularly memory has come to mind time and time again.

I was just recently out of the hospital. On top of everything else my vision was terrible even with my glasses on. Between the medications and being so sick everything was just a blur. But there George and I were, sitting in front of his computer finishing up his college applications. I remember thinking HOW? How exactly are we going to get from HERE to THERE? And what if we didn’t? The worry was incredible. So much “hinged on” those applications. Too much to even imagine the loss. He needed my guidance. He needed my help. No excuse was good enough. It all had to get done and it had to get done then. His future wasn’t going to wait for me to feel better and for me to see clearly again. So we did what we had to do and got them done despite our obstacles.

And here we are. Many months later. Sid home for summer and soon to be entering her Junior year in college. Libs with a Distinguished Scholar Award for keeping a 4.0 her Freshman year. My Reese thriving and ready to take on 2nd Grade. And George, a high school graduate leaving for college in just two short months. I can’t believe we got from THERE to HERE. Their resilience amazes me. They persisted and it all paid off. We made it. THEY made it.

Well, I hope you all have a day where you breathe a BIG SIGH of relief!!!

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!!!