Renewed faith, hope and joy!

It's April Fool's Day, technically nearing the end of the day, and as I type I am reminded of the events of this day nine years ago. I had just returned from a wedding in Durham and Fred had made his way back to me from Australia. It's as clear to me as if it happened yesterday.

We met the previous October in Charlotte, but he was technically living half way around the world, water skiing for Sea World. As much as I wanted it to happen, it was hard to believe he would ever leave that world, his amazing friends, the beach and a ridiculously fun job, to head back to the East Coast of the US with nothing definite in place.  But sure enough, it happened. He surprised me that night  by simply showing up at our house and I guess you could throw in the old saying, the rest is history.

It was a day filled with excitement and joy, unknowns and unspoken fears. But I wouldn't have changed it for anything in the world even if it didn't turn out the way I had hoped and prayed it would.

It's funny how life works and how there are many of the same feelings over and over again, although the circumstances surrounding them change.

This April Fool's Day is also filled with excitement and joy, unknowns and unspoken fears...nine years later.  The circumstances however, are drastically different. But once again, I wouldn't change anything even if that were an option.

What I can tell you, is that life has taught me volumes since the first day of April 2001. I now understand that even though I would not change the circumstances that were accumulated to create my life to this point, I have the power, with God's help, to affect my life going forward. And my life now includes my best friend (who I affectionately refer to as husband), and the angels with whom God has blessed us.

So, that brings me to where we are today.  And since this blog serves as my ongoing story to the boys as well as an update to everyone, I'll recap the last couple of weeks.

Hang on, there's been a lot hapnin' 'round here!

March 11
Little did I know that after my last post we would head off to visit our friends at Levine.  The short recap is: Logan woke up around 4:45am with one of the seizures where he cries afterwards for 2-3 hours. At the time we didn't know if it was an ongoing seizure, because during the 2-3 hours of crying his face and body twitches and he cries every time that happens. After being admitted, getting a video EEG set up, a heated discussion with the hospital neurologist because we did this through the ER and not by making an appointment, setting our neurologist straight and reminding her that we were told by her office to head into the ER if he had another one of these episodes and finally capturing what we were talking about on video, we were told that there was one 20 second seizure in the 18 hours of video monitoring. The other episodes were clusters of Myclonic jerks and the crying could not be explained because it was not seizure activity...he must just be fussy and irritable. Nice.

March 12
We head home from the hospital with a little fuel to our fire to get a second opinion for Logan.  He has a decent evening and we are all glad we are resting in our own beds. The hospital sure doesn't get more comfortable the more often we visit.

March 13
We decide to enjoy the day as a family!  This can also be translated as me going a little overboard with the activities, but we still had fun.  We had signed Freddie up for a Basketball clinic, however we didn't really give him much information on it before he and Fred headed to the first class. Oops. Let's just say he wasn't thrilled to participate. After that we decided to head uptown to the Charlotte St. Patrick's Day Parade, which we will likely participate in next year with our company. It was fun, but tough with all of the people and lines. The little ones got a little tired after a while, so we headed to the bookstore at SouthPark Mall where Fred and Logan took a little cat nap and Freddie and I enjoyed storytime and playing with the Thomas trains. We had already planned to have dinner in Concord with some wonderful friends and luckily all three boys took a nap on the way there!  Needless to say, everyone was completely exhausted by the end of the day. And to top it off, after carrying the camera with us all day....I didn't take one picture. Figures.

March 14
We rested.

March 15
Logan had surgery for tubes at Presbyterian Hospital at 10am this morning and everything went very well! He came through like a champ and didn't miss a beat. Nana and Freddie hung out and he got away with things that only happen when he has a special day with Nana.

March 16 - 21
Back to a somewhat normal schedule. Freddie to school and Logan PT, OT, his Early Interventionist visit and another interview/meet and greet with a nurse candidate.  Freddie loves school these days, so it's wonderful to know that he gets to do that two days each week.

We had a wonderful dinner with friends Friday night and then headed to a Spring festival nearby on Saturday after Freddie's basketball clinic.  Logan had a rough night Friday night and it spilled over into Saturday, so the Spring festival was a little tough.  Everyone started to shut down and we headed home to hopefully get everyone to bed at a decent time.

On Sunday, we rested, again.

March 22 - 28
This was a big week for us. Logan is now scheduled about 3 days out of the week with therapy and we are getting ready to add another. Granted, they are only hour long appointments, but we still have to schedule around them. So, currently he has OT on Monday morning, PT Tuesday morning, we will soon add another PT session on Wednesday afternoon and then his Early Interventionist comes on Thursday mornings.

This week we decided to throw in a Dermatology appointment for me, a trip to MUSC in Charleston (both on the same day, what was I thinking?), a vaccine appointment for Logan, an appointment with the nursing company, swim lessons for Freddie and a tour of a possible rental house.

Whew.  But it was good stuff.  We also had Logan's bath chair and wheelchair approved through Medicaid!!!!

We have had some minor struggles.  Swim lessons have been the same as the basketball clinic was for Freddie. The first lesson....and we were only scheduled for 4...he screamed and cried, would only sit in Fred's lap and refused to participate. It was frustrating and heart breaking all at the same time. All we wanted to do was scoop him up in our arms, wipe away his tears and tell him he never had to do that again. But we knew that wasn't what was best for him. We left that practice and he agreed that we would take a break for a day and then try again. Before the next class I literally spent about 30 minutes having a discussion about trying it. I explained that he had 2 choices. We were going to try it again and if he chose to cry and throw a fit, I would not be able to stay and watch, but if he tried like a big boy without crying then I would be able to stay. Those words were straight from God. I had dreaded even thinking about going back, but I knew we had to. I prayed and asked God to please give me the words to help Freddie.

We turned a corner that day with Freddie. He loves swim lessons and now enjoys basketball!  He even came home with the trophy last week from basketball! If that's not clear enough to show God's love, power and guidance then I don't know what is. He never said it would be easy, but He will always be there to guide us if we will just ask.

Current week
So, here we are.  It's Thursday, the first of April. We had a nurse start on Monday.  This was something that I truly believed would take months to finalize, I would have a very hard time allowing someone to come into my home and care for my child and I knew the boys were going to have to adjust to having someone here. Apparently God, as usual, knows much better than I. The boys absolutely, without a doubt, love her. Freddie thinks she is his new best friend. That's been a little challenging because she is really here to take care of Logan. But we'll work on that. And Logan has taken to her and has been comfortable with her from the first day. Believe me, that is something much more than just answered prayer.

We also worked on the home repairs for our house sale, got an estimate for moving, had an appraiser come out, did a little Easter shopping and managed to provide food for everyone each day, about 3 times....I won't necessarily call them meals or balanced, but everyone is still functioning!

Freddie had a blast at his Easter egg hunt today at school and we're going to one at church on Saturday. We actually have coordinating outfits and the boys have matching sweaters for Sunday morning, so I'm hoping...and praying once again...that I can get a great picture of all of us out of it!

It's not just our home life that is traveling along at mach speed.  Fred has so many decisions to make with the business it's unreal. But they are good decisions, just a lot of them all at once it seems. But that's how life is. It doesn't sit around and let you decide when to live it.

So that's what we're trying to do. Amid all the chaos and major, life changing decisions we are making, we are trying to live and enjoy each and every day that God grants us.

I can't begin to count the blessings in our lives. God continues to open doors and deliver amazing people to us.

Our trip to MUSC was wonderful. It may not have provided earth shattering new information, but it is helping us to continue to navigate our way through this crazy world of brain abnormalities, epilepsy and neurological stuff.  I prayed we would find someone who saw our child as just that... a child.  More than data on a chart. We found that. They seemed to understand that there is more going on than just a diagnosis and treatment. Logan has so much life to live and currently he is not able to do that to the fullest extent. But that update will come in another chapter, because we have to make some decisions and steps to get things rolling. Prayers for God's guidance, patience and grace would be much appreciated in helping us know the best way to proceed.

So now the boys are all sleeping....well, sort of. I know Freddie is for now. Logan is having seizures and struggling to breath with what we think are allergies. That poor child just can't catch a break. But he his more alert these days and making more progress developmentally than we have seen in a while. You certainly can't keep these little ones down. If he can smile and squeal with all he has going on, I can certainly find the joys in life to get excited about!

Sweet dreams sweet boys! I'm excited for our Easter weekend! It's the first one where Freddie is beginning to understand, the second one for Logan and one in which my gratefulness and joy for the Lord is greater than ever before.

Happy Easter everyone!  May God bless each of you throughout this joyous weekend!