All Are Welcome

Only 4 more days with my safety net of Simply Thick!! On Thursday, we will discontinue use of it and let Sloane have liquids in their natural form. I would have to say that we will be hyper alert for the next few weeks. My hubby told "the machine" last night when she questioned if Sloane was ready for no thickener....exactly what I was thinking.....we will know very soon if Sloane isnt ready to safely handle liquids in their natural form. Hyper Alert.....I'll be watching, listening and navigating every sip for the first few weeks. And I am sure that I will put my head against her chest frequently to hear her lungs. Hyper Alert!!! I have been told by many medical professionals that I will know if Sloane has pneumonia.....I, for whatever reason, can't rationally wrap my head around that and think I will miss the first sign and the runaway train will begin.......

Sloane has been drinking well, but she also has become a juice box hoarder. We have every flavor milk box, the Odwalla juice boxes (thank you to our friend Cheryl who found them at Market Basket) and yogurt smoothies. She loves them all, but more than drinking them...she loves to insert the straws into the boxes. She has become a hoarder and we have in a very Jerry Seinfeld way become the Juice Box Nazis.....No more, Juice Box for you!!

There was a full force tugging war over vanilla milk today before church. Perhaps that is the reason that our one hour of religious devotion today didnt go so well? Going to Sunday mass is something that was a tradition in my family. It was usually followed by going out to breakfast which made it all the more fun in my 9 year old eyes. It was a tradition that I treasured and continued to embrace until my mother passed away 16 years ago. I like to say that I took a sabbatical from my faith for a while. I needed to sort some things out with my higher power. Once my hubby and I decided to make a life together, we both headed back to a place where our spirituality took more of a priority in our lives.

I have always been a praying girl and having a child only amplified that. We prayed for a baby, then we prayed for our baby to be born healthy and then...... we started praying for all sorts of things that you shouldnt have to pray for in my opinion.
Things like:
please let my baby take another breath,
please let my baby not turn blue,
please let my baby wake up from anesthesia,
please let my baby not tug at the tube hanging from her belly, please let my baby not reflux so badly that she aspirates her reflux into her lungs,
please do not let my baby catch a cold. We prayed and prayed. And we still pray!!

Now, I am sure if my hubby would agree.....that God has been good to us. He answered our prayers and gave us a place to ground ourselves. Our church is one that has welcomed us in open arms. The sign above the door reads: All are Welcome. I love that. I have some issues with old traditions of the church so it is nice to see in some ways they are evolving with the present day.

Our priest is a family friend. He is a good man who bent over backwards to give us peace of mind while Sloane was in the throws of her laryngeal cleft diagnosis. He even broke some rules and let us have a private baptism because the thought of germs floating around mid winter in our church was one that tortured me. I begged my hubby to beg the Father to have a private baptism so we could keep it germ free. Church, while Sloane was an infant with a feeding tube, became a scary place. A big, bad, germy place.

We went to church as a family when it wasnt cold and flu season, when we werent needing a tube feed, and we sat in the back row far away from anyone coughing on our backs. Now that life has become more manageable and we have become more rational, we all pile into the car on Sunday mornings to get in touch with our spirituality. It has been going well. There are special snacks, whispers and some quiet play.

Today was a different story. Sloane was a bit too chatty and energetic for church. Now, I have had a conversation with our priest about the tolerance of children in the congregation. He is not bothered by it and in fact welcomes it. I will assume the thought is that toddlers/children have to learn how to behave in church and the only way to do that is to come to church. I am sure I don't have to explain why we wouldn't make ourselves comfy in the "cry room". To us, that would be like being locked in a box full of germs.

Sloane chatted and ate her way thru the homily. I could feel the eyes of the congregation on me. Many probably thinking.....shhh!!!
My hubby decided to take Sloane for a walk during the time for "peace with you." The jury is still out on whether Sloane needed a walk or my hubby needed to remove his hands from an unsolicited handshake. LOL!! Once they were gone, I immediately felt my shoulders relax. It hit me.....church was no longer a tradition for me.....it was a stressor!! I am all tied in knots because I am so worried about Sloane disturbing the people around us or in the worst case scenario...the priest. Last week, when he was all finished with his homily, Sloane piped up with a chipper "all done!!" for those near us to giggle at!!

I know the sign says "all are welcome" but I worry that the fine print read..."quietly." It isnt the church, priest or steeple that make me feel this way; its the people. I am sure there are those who remember when or those who appreciate the social butterfly that my daughter is. Hopefully, the 50+ woman that Sloane initiated a game of Peek A Boo with today!! But, there are also those who are in church for the solitude, peace and organized routine of it. Those people are the ones I think that are glaring at us, wishing we dont sit near them, and wondering if know there is a cry room???

The stress that comes with going to church is stressing me out. I dont know what to do and I dont know how to fix this. I like going to church and I want Sloane to respect the tradition of spending an hour with your faith each week. Maybe I'll ask our priest to add some fine print on the bottom of the "All are Welcome" sign that reads "even the toddler named Sloane Jacqueline"!!