Miracles To Milestones’ Big Debut

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What initially started off as a busy week for Miracles to Milestones (meetings, interviews, and more meetings), ended up with a quick change in plans as Benjamin decided he needed a trip the the ER. Benjamin fought a cold all weekend, but on Monday, he had pretty much thrown in the towel. This is the same cold Isla and Lennon had while they ran around the neighborhood and played in the backyard all weekend. Benjamin just can’t fight it off as easily as the girls. So, Monday afternoon, we rushed to the ER, and earned a trip to the PICU. After IV fluids, Benjamin started to perk up, and was on the mend. We arrived home Thursday morning with just enough time to clean up for the news’ crew.

Here is Lennon’s, Isla’s, and Benjamin’s big debut. 🙂 Thanks to WGNO and Vanessa for sharing our dream.

http://wgno.com/2013/10/24/st-charles-parish-mother-builds-inclusive-park/

Thanks so much for all the kind words and support we have received. It keeps us motivated and optimistic. So much is in the works for Miracles To Milestones. 🙂

If you would like to donate, we would prefer that you mail it directly to the bank:

“Miracles To Milestones”
First American Bank And Trust
Luling Branch
13919 River Rd, Ste 100
Luling, La. 70070

But if not, you may use this online website: http://www.gofundme.com/miraclestomilestones.

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Success

Sharing our dream for the playground also opens the door for questions about Benjamin and his condition. Today it really hit me hard that the first question many people ask is “will he ever be able to walk?” As a pediatric physical therapist, I understand the importance of walking, and it was definitely a tough pill to swallow when we realized Benjamin would probably never be able to walk. Though I have tried my hardest to help children reach their potential physically, I never judged their success on this. Why must society decide that our success is based on how well you walk or run, when our success should be based on how many lives we have touched, and what positive changes we are able to make while we are here? In that case, Benjamin and the hundreds of kids I have had the pleasure to meet as a therapist, have accomplished more in their lives than most. They tend to use their gifts given to them by God, much more efficiently than the rest of us.

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Picture is of Benjamin cheering on his sister at her soccer game.

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God, I Am Listening!

Sometimes it takes a devastating event to open your eyes and strengthen the bond that was already there between you and God. Maybe that is where He is the loudest, or maybe that is where we finally decide to listen out of desperation. Growing up Catholic, praying was a huge part of my life, or so I thought. I have very early memories of saying my nightly prayers, trying to make sure I listed everyone I knew, afraid of what might happen if I left anyone out. As I matured and grew older, I prayed at night, for meals, in thanksgiving, for family and friends, and for guidance. What I didn’t do was listen…too much talking, not enough listening. I was waiting for God to DO something, instead of letting him lead me in the right direction or guide me in what I NEEDED TO DO. It wasn’t until Benjamin, that I finally started to listen. Sitting in silence for hours a day, staring at a helpless infant can do that.

Once my prayers in the hospital were answered, and Benjamin came home from the hospital and started to thrive, my fears of never being able to have more children weighed heavily on my heart. I found myself throwing out baby clothes and toys that Benjamin wasn’t able to fit into or be able to play with because of anger and sadness knowing that we might not be able to have any more children. Long pajamas were thrown out because of Benjamin’s monitor, and onesies were thrown out because they make feedings difficult. I realize that we are so blessed to have three happy, smart, and beautiful children, and I know many people would think that three is enough, but ever since the day KC and I decided we wanted children, we knew we wanted a full house. 🙂 So many of our homilies in church recently have been about our vocations… while it is not for everyone, I am happy to say that being a mother and wife are mine. Love is not divided among children, it is multiplied.

While I was too busy feeling sorry for myself, I never took time to listen for God’s plan, until the day he guided me to join in on a Woman’s meeting one Saturday morning. That morning she sent us to pray over the scriptures. Like I mentioned in an earlier entry, I was expecting nothing and received everything I needed. Not only did I receive comfort for Lennon and Isla’s well being, I also received a message I have waited until now to share. While in prayer with my eyes closed, a vision came to me. It was a vision of Benjamin lying in the bed playing with a baby. Benjamin was around two and the baby around six months. They both looked so happy, responding so well to each other. Immediately, a weight (that I didn’t realize was truly there) was lifted, and I knew that KC and I would be blessed with another child. Tears flooded my eyes and a sense of peace swept over me. I had listened and He was answering. That day, I shared my story with KC. Much to my surprise, with open arms and heart, he agreed that he was definitely ready for our family to grow once again.

A few weeks later, I was with my family on a trip. I hadn’t shared my experience with anyone else, scared of their reaction. “Are you crazy? You already have three! How are you going to be able to manage everything?” This rolled through my head all weekend gnawing at my heart and stomach. On the drive home, at the end of my rope, I prayed….and listened. I repeated over and over, “Lord, is this what we are suppose to do? How will everyone react? Can we handle it?” I briefly closed my eyes, and had a vision of Jesus with His hands and arms open, moving towards me ready to wrap His arms around me. Once again, I knew it would be fine. I looked down, fighting tears, and noticed chill bumps covering my arms. The weight once again had been lifted off my heart…I was listening.

The next week, I attended a graduation at Ursuline Academy. As we were leaving, we went a different route through the school halls, making it a little easier on Benjamin’s wheelchair. We walked down the beautiful halls of Ursuline Academy noticing all the history through pictures and art work. As we turned a corner, my heart stopped and tears filled my eyes once again. At the end of the hall, standing in the middle of an empty room, was a statue of Jesus with his hands and arms open ready to wrap His arms around me. This statue of Jesus was the same vision I had seen the week before. I know many statues of Jesus have him posed with his arms out, but this was exact. I had never seen a statue quite like this, and I had never been to Ursuline Academy. If I wasn’t listening before, I was definitely listening now.

The next Monday, still with just a small bit of doubt in my heart about “if we can do this,” “how will our family handle it,” I went to morning mass. This day, there was a visiting Priest, and once again, God sent me a message. (I am sure by now, He was wondering how many I needed) 🙂 The Homily focused on worrying less about the logistics of things and leading more by FAITH. Thank you Father! So many times, we begin to doubt, when all we need is Faith in God and in ourselves. After mass, I went to the statue of Mary to pray. Anytime I feel “mommy stressed,” I always try to remember Mary as a mother. She endured so much, but never lost FAITH. I sat there quietly, just listening, and as I closed my eyes, I had a vision of Mary walking towards me, handing me a baby… Our baby. It was only a matter of time…I was listening.

Going into our appointment with the geneticist last month, I was anxious, but I was at peace. (if that makes any sense) I just felt as though KC and I would be OK to have more children, so when he handed us the results, it was almost as if I had already received them. Maybe I am naive, or maybe it’s Faith, but I knew we would be just fine.

So why do I share all of this now. Well, this story brings us to today, thirteen weeks pregnant, and we couldn’t be more excited. We know this is all in God’s plan for us, and the girls couldn’t be more excited. Isla is hoping for a “gurl,” and Lennon is praying for a boy. I am sure Benjamin is just hoping for a good sleeper.

After I finished writing this, I read the scriptures I was assigned in a class I am taking. Just in case I needed to be reassured, this is what I read…

The Lord will give you bread in adversity
and water in affliction.
No longer will your Teacher hide himself,
but with your own eyes you shall see your Teacher,
And your ears shall hear a word behind you:
“This is the way; walk in it.”
when you would turn to the right or the left.
Isaiah 30:20-21

Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests known to God. Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus.
Philippians 4:6-7

Jesus looked at them and said, “For human beings this is impossible, but for God all things are possible.”
Matthew 19:26

God, I am listening!

Looks like the Sirmons are going to need a larger swingset. DSC_0314

Take Your Candle, Go Light Your World

When you first find out that your son has a rare disease, you reach out for support, answers, comfort, and understanding. KC and I found all these things in a small MTM-CNM community. With this community along with social media, we are able to follow and share the triumphs, accomplishments, birthdays, and special moments of other children dealing with similar battles as Benjamin. Along with these special moments, also comes heartache. In the past year and a half, we have watched a few of these kiddos gain their entrance to heaven, but until this week, we had never met, or physically touched any of them.

This past summer in Minnesota, we met such wonderful people and kiddos that will change our lives forever. Among them was a sweet family with an adorable, full of life five year old. Matteo loved cars, was mastering the power chair, and had quite a sense of humor. His parents were so fun and full of energy, you could easily see where he inherited his love for life.

Last night, his parents held him until his heart stopped. I can’t imagine what his parents are going through right now, and I find it very difficult to come up with words to comfort them, if that is even possible. At times, it’s hard for me to find comfort myself. His parents have shared their journey with us, and I am in awe of their strength through such a difficult time.

This is a harsh reminder of how fragile our children are, and the uniqueness of our situations. Benjamin and his friends are so happy and full of joy, that is it so easy to forget the severity of the situation. When people ask how Benjamin is doing, I am always happy to answer “great.” He continues to grow, improve, and has stayed healthy this summer. Unfortunately, these times remind me that my son lives on life support, and has a shortened life expectancy. Benjamin and his buddies, though, help you enjoy life’s little things and open your eyes to a beautiful world, that otherwise I might have taken advantage of.

Since we have prayed for this little angel with the girls all week, I thought I needed to share with them that he was now in Heaven. In our house we talk about Heaven frequently. Living with a little brother with a medically fragile disease, I feel it is very important to prepare them, and let them know that death is not the end. We emphasize how wonderful Heaven is and that Benjamin will be able to breath and walk on his own, and that we will all be together again one day.

I feel so blessed to have met this amazing family, and I hope one day we will meet again. Lennon even asked this morning if we could go visit them, so they are not alone. Though our community spreads across countries, we never feel alone with so many families to lean on for support. This journey would have been much bumpier without them.

In mass this morning, we sang “take your candle, go light your world.” It is not important how long your candle can last, but how bright it glows. For Benjamin’s friend, Matteo, his candle did not last as long as we would have wanted, but the bright glow from his candle definitely lit up our world.

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