Overload

I just finished filling out a huge pile of paperwork for Maggie's appointment with the neurologist tomorrow. It is these moments when I have to organize, list and sort through the past year or so of our life that I get overwhelmed. I had to answer a huge list of questions about Maggie from in utero until present. I am reminded of how sick she has been and our journey the past year. It always amazes me how much she has gone through in such a short time. Most importantly, I always come away feeling grateful for the huge list of blessings I am reminded of.

I am a bit scared about the appointment. It is another specialist who will have a huge list of questions. Plus the basic exam and possible tests she will want to run. I just want to get this next step over with so we can move on. Poor Maggie struggles every day with her head hurting. It exhausts her but she still keeps on with her spunk and sparkle. The edges are starting to fray a bit and she is showing signs of the stress. The child who never naps is now sleeping during quiet time. There are a few more temper tantrums and a struggle with separating from Mom. I have spoken with her pediatrician and the developmental pediatrician for reassurance and advice. Both have shared some great ideas and empathized that the kid is going through a rough time. Sooner or later she is going to show it in some way.

Ricks is having his own medical struggles. He has been experiencing red/inflamed ears. They are pretty painful. It has caused him to lay on the floor holding his ears and rolling around in pain. There is no consoling him. We have to somehow get ibuprofen in him and wait until it takes effect. I can't seem to put rhyme or reason to why this is happening. So off to guess who to try and figure it out? If you guessed Dr. T you are right on the button.

I made an appointment with Dr. T for June 17th a couple of weeks ago when I wasn't so worried. I called today to move it up and am waiting for a call back. I am worried that Ricks has an autoimmune disorder and that is why he has the red ears and the pain. I am not sure what it all means and have tried not to read on the internet. I am scared and praying. It is hard because Maggie's medical issues are always so large and demanding. It feels as if Ricks gets pushed to the back. I joke that he suffers from "second child syndrome" I just get so tired of taking Maggie to the doctor and managing her issues that I don't jump on his as fast. I probably should have acted faster and not waited until his 3rd episode to get him in sooner. But I can only do what I can do.

So now we do the next right thing with Maggie and the neurologist. I take Ricks in to see Dr. T as soon as possible to start figuring out what is happening with him. And hopefully I get to the salon soon for my pedicure and maybe even a massage. I just keep praying and staying in the moment. It is days like these that the fear can overtake me and I feel like I can't breath. It is like my heart is in my chest and my world is spinning. But tonight I feel overloaded but safe in the knowledge that God is present. All I need to do is the next right thing and it will all turn out as it should. Now to just keep myself organized and remember all the paperwork!

Check

Just went in to check on Maggie. She woke up and sleepily looked at me while I tucked her back in her sheet. I leaned over to kiss her and she put her hands on my cheeks. She gave me a kiss and told me, "Momma you are the best Mommy ever. I love you." Then she closed her eyes and drifted back off to sleep. These are the moments I live for. This is the moment that makes this morning and every other frustrating moment disappear. I love this girl with all my heart and soul. Thank you God for blessing me with my little firework!

Behind the 8 Ball

This morning I was feeling so overloaded with the to do list. I had so much I felt should be done and organized but so little of it done. It all started with a jolt when Maggie woke me up and I realized I forgot to set the alarm. We raced to get ready for gymnastic's camp which means A LOT of nagging. Plus Rick advised me at 8:45 that he forgot he had to meet his Marketing group at 10 so he had to leave by 9. This meant Ricks had to be fed and changed to take Maggie to gymnastic's camp. I barely had time to brush my hair before it was time to jump in the car.

I walked in and saw all these Moms who "appeared" to be so much more together. Maggie had a bit of an anxiety attack due to her separation issues. She has been struggling the past month on saying goodbye. It seems to be related to all the medical stuff going on and we are doing our best to support and deal. While trying to be as patient as possible and get her in to camp, Ricks pushes a little 18 month old girl. I didn't notice until I saw the other Mom reprimanding him. I felt a bit embarrassed and quickly did my best to discipline him. Ricks did not seem to care and I was frazzled.

I got home with plans for cleaning and a nice shower. Instead I got a phone call that lead to another phone call and before I knew it was 10:45. I wanted to spend some time playing with Ricks and had to feed him lunch. Soon enough it was time to pick Maggie up. I hadn't showered or changed or got any of my cleaning done. I walked into the lobby and looked around at all the other Moms. I felt pretty yucks next to most of them. I knew they were all looking at my crazy boy and felt sorry for this Mom who couldn't even find a moment for a quick shower. Yes I was a bit paranoid and crazy!

All of that craziness because I am struggling with the basics around here of housekeeping. I may not be "put together" when I walk out the door some days. I have clean laundry piled up in the hallway and dirty dishes in my sink. You think I would have worked on it during nap time. But the truth is I was exhausted so I ate lunch and laid down on the couch. Then we had a playdate with friends, dinner and a visit from some out of town family. Finally the kids went to bed and I had some other things to do. Rick and I actually spent some time talking. It wasn't about finances, medical stuff, his school or the basics of running our house. It was a great conversation about our relationship, our present, future and love. We have struggled at some points with all the stress going on and it was nice to connect.

In the end I doubt my kids will remember the laundry baskets lining the hallway. Or that the dishes took until dinner to get cleaned. What they will remember is the time and the memories we made. I hope Maggie remembers the love and support I gave her to go in to gymnastic's camp when the anxiety seemed to take over. I hope Ricks remembers the 1/2 hour spent playing cars. That is what I want my kids to think back and hold onto. I want them to feel the love and warmth of the memories we make together. The other stuff will be there in the morning!

Just Be

It has been an exhausting weekend. I am bushed and wish I had a down day to just sleep and relax. The reality is we have an early morning tomorrow for school. It is Maggie's last week of preschool. After Tuesday, summer vacation officially starts! The first few weeks of vacation are busy with gymnastics, Vacation Bible School and a Nature Center camp. I wish I hadn't been so busy making plans. We could just sit back and enjoy the summer from the get go.

The next few weeks may be bring a lot of other craziness as we try to figure out what is happening medically with Maggie. On Thursday we have an appointment with the pediatric neurologist and we go from there. It all can seem overwhelming but I am just trying to stay in the moment.

All I want to do is just be. Just sit back and enjoy the beautiful weather. I want to be able to slow down and watch my kids as they master their new swing set. It would be awesome to just sit and listen to their laughter and chatter. We may have a lot on the calendar and I think I may have to do some rearranging. I may need to insert some more time to just be and less time for activities.

Hyped Up on Lollipops

Maggie is a tiny bit hyped up on sugar today. It was the St. Clare parish festival and we were working the lollipop game. I think she ended up having just a few to many lollipops during the 4 hours we worked. It was all fine with me though because for the first time in about a month I saw her show an excitement that had been clouded. She ran from game to game, playing and laughing. And then she would return for another turn at the lollipops. I have a bag full of cheap junk she won but it was all worth it for the laughter and smile.

When Maggie told me she wanted to go work with me at the festival I was a bit hesitant. Four hours of running a game and a four year old's patience level did not seem to go together in my mind. Even with that, I agreed and off we went. I explained the situation and warned her that to much whining or fussing and I would call Daddy to pick her up. That means no rides, no yummies and no fun after our shift ended.

I have no idea why I was so worried. She helped me run the game, ran to each booth and played all the games around us. When the afternoon sun got hot and she was a bit tired she crawled up on my lap for a quick break. Through it all she was patient and happy. It was if the sun and activity had lighted that spark that had been dampened by feeling sick. I could have cared less how many lollipops she ate, that all she at for dinner was potato chips, fries and lemonade or about the ice cream which was her appetizer. She was happy and this is a once in a while event.

So at the end of the day, she crawled into bed and told me what an happy day she had. The consequence of the sugar has her bouncing off her walls and singing herself to sleep. The happiness lingering in the note of each song she sings. As her Mom I tell her to close her eyes and go to sleep. But in my heart I am so happy to hear her joy and to have seen her revel in the fun. It was much needed for both of us!

Exhaustion

I am exhausted. Last night I was asleep by 9 and tonight I am going to bed immediately following this post. I can't even think I am so tired. I think all the crisis adrenalin is gone and the tired is catching up with me. The best part is the fun is just getting started. Maggie has an appointment with the pediatric neurologist on Thursday. I have no idea what that will mean or what we will have to do. I just know I have to have her down to Rainbow at 4 on Thursday. So I am going to crash while I can!

Get Real

I have a new favorite book! It is called Heaven is for Real by Todd Burpo. It was recommended to me a couple of weeks ago and I read a few pages that were available online. I immediately wanted to read more and anxiously waited until it arrived in the mail. It was one of those books I just couldn't put down and I finished it in one day. Last night I picked it up again and started reading it for the second time.

It is an amazing story from the eyes of a father of his son's experiences in heaven. The little boy has a medical emergency which leaves him close to death. After he has recovered and throughout a significant time span, this story comes out about his visit to heaven. It just gave me chills as I read it. I chose to believe that this boy had these amazing experiences. It filled me with hope in so many ways.

The best message I took from the book (the first read through) was a person can be real with God. What a wonderful message as I walk this journey of primary immune deficiency. I can have a conversation with God where I say all that I am, feel and think. I have to admit that in my most angry moments I have even used the "f" word. To me God is like a parent who stand back and lets me vent, cry or throw my temper tantrum. When I am done He gently puts His strong arms around me and says "Now are you done?" And much like I do with my kids, He kisses my head and tells me "I love you." Like my kids, I don't always get what I want, when I want it. But I do always know He is listening.

I suppose that is the best part of my faith. God isn't some Deity sitting on a throne passing judgment. He is this amazing, loving Force who sometimes has to be tough to help me learn and grow. I grew up believing in Him but feeling He had made some major mistake with me. I was never connected to Him and felt that big hole. I endlessly tried to fill the hole with one thing or another. Today there is not gaping hole in my life. It is full with the good, the bad and the plain goofy. I thank God every day for each moment, experience and blessing I have. One of the biggest is a relationship with Him that is real, strong and always present.