Life

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It is not easy for me to explain what seeing Addi and Matt meant to me.  The past five days were a blessing.

I had grandiose hopes of surprising Matt right outside of the security checkpoint, thanks to the airport police, but unfortunately, my GPS chose that day, of all days, to not cooperate.  After driving in circles for thirty minutes while it “rerouted,” I received a text from Matt that they had landed…twenty minutes early.

Our initial reunion did not play out like I had in my mind, but that doesn’t make it any less meaningful.  I fought back tears of happiness as I hugged Addi and Matt and said a silent thank you to everyone who made the reunion possible.

After making it back to our vacation retreat (GPS decided to work), it felt like we were picking up right where we left off.

Matt and Brian broke out in a serious tickle war, which ended with Brian, way too zealous to tackle Matt, smacking his mouth and cutting the inside of his lip.  It took a little bit to calm him down, but it didn’t dampen our excitement.

Maybe things did not go as planned, but isn’t that how life is?  I’ve always loved the quote, “If you want to hear God laugh, tell him your plans.”  I don’t think God was laughing at us, but maybe just reminding us that he is the one in control, not us.  (Does anyone else sense a theme here??  God, I KNOW you are calling the shots!)

We did a little sight seeing, but for the most part, we just spent time together.  Also, thanks to the generous and amazing support of the Philadelphia Fraternal Order of Police, Matt was able to help Brian and I move in to our new residence.

The whole visit was just what Brian and I needed on our end, and I hope Addi and Matt left feeling the same way.  I’m still exhausted, but I feel a renewed strength to face the unknown and possibly very long road ahead.

Brian has been free of food for almost three weeks.  I was over the moon when he began to have normal bowel movements shortly after removing food, but then they turned to constipation.  The GI department suggested one cap of Miralax a day to help with the problem.  After one dose, we had the opposite problem and were dealing with pure liquid, multiple times a day.  Without the medicine he goes a couple days without having a bowel movement.  I tried to lower the dose, but still ended up with the same problems – drastically changing from one extreme to another.

In addition, last week Brian woke up gagging and chocking.  He spit up a little bile, but the act was loud enough to alert another mom in the house where we were staying that there was a problem.  We both came running to check on him.  He spit the bile in my hand, swallowed a few times, and then fell back to sleep like nothing had happened.

I called the doctors again and they recommended starting Nexium and that an X-Ray of his stomach might be necessary to determine if there was a back up causing the constipation.

Then last Friday Brian began choking on a drink of water causing me to quickly pull over the car on the side of the highway and check to see if he was okay.  The same thing has happened twice today (once while drinking and the second while just standing still).

As if bowel issues and choking were not enough to deal with, Brian also developed a new rash yesterday on his arms, legs and stomach, which has grown worse today.

I’m hoping no one will fault me for saying I am confused and frustrated by these issues.

My research and discussions with doctors say that once food is removed, these symptoms should begin to disappear, not increase.  Then, after hearing the saddest “please” in his very hoarse voice, my heart broke.

I would do anything to help my little man feel better, as shown with our move across the country.  I know tomorrow will be filled with phone calls and questions.  Sadly, I do not think that we will make it to September 10 before having to see a doctor again.

In an effort to lighten my sadness over Matt and Addi leaving, I bought some flowers and placed them in the only container I have…a Spiderman cup.  Brian jumps up on the chair to smell the flowers every chance he can.  They make things feel a little more “homey” for me.

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Tonight, when Brian is asleep, I know the tears will fall.  I miss my family and my home, but I know how blessed we are to have so many people looking out for us and taking us under their wings, especially the Philadelphia Fraternal Order of Police.  I hope those guys are prepared for Brian and I to show up at the lodge far too often, because I do see it as a home away from home.

Even when my emotions get the better of me, God has a way of showing that Brian and I are never alone; whether through a phone call checking in or a package reminding us other are backing us up in this fight.

Today, “Brothers for Brian” bracelets arrived.  I don’t know if I will take mine off, and Brian prefers to load as many as possible on his arm and then fling them around the room.  If anyone would like one, please do not hesitate to send me a message and I will make sure one is sent off immediately.

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I speak to our family, friends and strangers when I say thank you for making a reunion for our family possible.  Thank you for finding us a place to live.  Thank you for just being there.

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4 thoughts on “Life

  1. Your strength and courage will help you keep going as you continue on day after day on finding ways to help your lil man. Know that you are loved and missed by all that are thinking of you.

    Liked by 1 person

  2. Ah Erin, my heart breaks hearing your struggles. I’m sending love and prayers.
    Oh, btw, you are an amazing writer!!! You
    Really have a style in the midst of all of the chaos. I am so impressed at how Brian is handling all of this and it looks like he smiles a lot! I would like to be one of the people that helps get you what you need. Is there a website or should I call your mom? I love you honey!
    Hang in there. Love to both of you!😍

    Liked by 1 person

  3. Hello Erin. I suffer from a chronic disease and found your blog a few days ago while doing some online research. You remind me of my own mother, you are the kind of person willing to do anything for your child. I hope Brian’s symptom will soon be under control, I feel for him 😦 I hope you and the little guy stay strong, I do know how hard it is at times..well, most of the time actually. I do enjoy reading your blog. Hang in there 🙂

    Liked by 1 person

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