Washington DC

We just got back from 6 day road trip to Philadelphia for my brother's wedding. We went through 7 states & DC, stayed in 5 different hotels & spent about 34 hours actually travelling. Fun times! Wedding photos to come in a later post.

Since we were going to be going around DC on the Capital Beltway anyway, we decided to spend one night in Chevy Chase, MD and take the subway into DC for a couple of hours. We managed to see the major monuments from the Mall & gets some pictures of Joshua in front of them.



John & Joshua in front of the Washington Monument.

We didn't have time to get close to the White House, but if you look in the background you can see it a couple of blocks away.

The Lincoln Memorial from the WWII Memorial.

Joshua & I at the WWII Memorial. He loved all of the fountains.

Summer Reading

I know summer is really over, but I am just now getting to posting this. I have considered many times but just never did. With Joshua having less therapy sessions during the summer, I somehow decided I had more time to read....even though I didn't have any time to read during the day. Anyway, I wanted to share a couple of books that I read. I think it shows alot about where my heart is & really where I still am in processing much of what we have been through.

The first is A Symphony in the Dark: Hearing God's Voice in Seasons of Grief. This book was recommended by a friend on her blog. I literally read it in a couple of hours. I couldn't put it down even though it is a heart-breaking story. I think anyone who has lost a child of any age should definitely read it. I think my favorite quote from the book is "the Creator of all beauty knows that in His living works of art and song the most beautiful are those who have known the darkness of pain and loss, thereby magnifying the lightness of great joys and delights" (by Barbara Rainey, pg 26).

The second book, which I am still reading, is Unexpected Journey: When Special Needs Change Our Course. Many people don't realize that Joshua is considered "special needs" at this point in his life. We have no idea if this will always be the case or not, but for now, we find ourselves to be caretakers of a special needs child....a job we didn't sign up for & didn't (still don't) feel prepared for. However, we are learning as we go & have seen many blessings from his precious life. This book is written by parents of a special needs child (now an adult). They continue to care for their son but also cared for parents who had special medical needs in their declining years. I think everyone should read this book for a couple of reasons. First, you never know what the future holds. An accident or medical condition could put you or someone you love in the role of a "special needs" person or caretaker. Second, it gives so much insight into what life is like for a family that has a person with special needs. I have read so many things in this book that I have thought & wished I could share with others but just didn't know how.

What is next on my reading list? I have already started a book that was written by the doctor who developed a certain type of therapy that we are trying with Joshua, and have another of his books that further discusses that therapy. After that, I plan to try to get to When God Breaks Your Heart: Choosing Hope in the Midst of Faith-Shattering Circumstances, The Hidden Smile of God, and The Challenging Child (yes, I admit that even though my child is cute & sweet....he is a challenge!). I think after all of that, I will be ready for some light reading. Of course, maybe all of this balances out the thousands of readings of Brown Bear, Brown Bear and Llama Llama Mad at Mama!!

Since I know it is wrong to post something so long & serious without any pictures, here is one from playing a couple of nights ago:

State Park

We have been loving the cooler weather lately! Sunday we decided to head to our local state park to visit the petting farm. We also decided to try out the Tree-Top Trail...we had tried to find it before & missed it. It is only 1/3 of a mile long, but is easy for little ones.

While we were paying to get in, the lady at the gate looked back at Joshua & asked, "Is he under 5?" Are you kidding me?? He isn't even 3 yet!! I often get the comment that he looks 4, but no one has ever asked if he was 5. I thought it was ridiculous!

This is on the tree-top trail. We opted for the stroller only because Joshua will decide that he wants to be carried. Neither of us were up to carrying him 2/3 of a mile! There are some pens (cages?) with rehabilitating birds in them along the trail.

At the petting farm. Joshua kept rubbing his head on the animals & grabbing the goats by the horns. I don't think they appreciated it but Joshua sure loved it!

Sleeping Woes

I promise I have not fallen off of the face of the earth! We had a rush of therapy, doctor's appointments, etc & now we have a much needed break. Giving me time to finally think through things for the first time since life seemed to turn upside-down....more on some of those thoughts later.

I finally got a diagnosis for my chest pain & some other issues that I didn't think were related (one being difficulty sleeping): mitral valve prolapse. My doctor gave me a med to help me sleep....which would be great if Joshua would let me sleep!

Confession time: we just moved him out of his crib 3-4 weeks ago. I know....he's so big (almost 3 & half feet tall!), but he never tried to climb out. It was just easier to keep him in it. However, he is a rough sleeper & kept hitting the sides of the crib causing crying, so John said we had to move on. The first 2 weeks he did great! Only fell off twice & would stay in his bed even after he woke up in the morning. Then, after I started sleeping well, he decided to come find us at 1:45 am!! He was ready to play. After about 3 hours he went back to sleep. Since then, we have had him come in to our bed a couple of times randomly throughout the night. It's great: the dog growls, I wake up with no clue what is going on because I took a sleeping pill! Usually, I could get Joshua to go back to his bed & stay until at least 6:30 (oh for the days when he would sleep until almost 8:00...like last week!). Last night, he joined us at 11:55. John decided that was it & went to another bed. I put Joshua back in his bed & went back to sleep. This scenario repeated 2 more times before I gave up & just let him sleep with me. He slept in a ball at the foot of the bed on top of the covers....so funny. So, now I am playing detective to try to determine why he won't stay in his bed...since he can't talk to tell me what's up. I really don't think it is just that he wants to be with us. My first thought is his room is cooler than the other room upstairs (he won't stay covered up). So, I bought a deflector to go on his vent today. Also, there is a fleece blanket on our bed & he is very tactile, so I bought him a fleece blanket today for him to sleep on top of. The other thought is that he just wants a bigger bed than a twin. We'll see. I can't stand the thought of locking him in his room, as some parents do to keep their toddlers in bed. And, I am afraid that a gate in his doorway would either not withstand our strong guy, or he would just climb over it. Maybe we will get this figured out soon!

Shoes

Today we went shoe shopping for the whole family. We had never officially taken Joshua shoe shopping. By that, I mean we had never actually had Joshua "fitted" for shoes...because his behavior can be so bad we just didn't want to put up the fight. However, now his PT has recommended a special insert for his shoes because his ankles are still rolling in a good bit on both feet causing instability. So this time we knew we would have to have help getting the right size. I'm not completely convinced the salesman got us the correct size but then again, what do I know. I couldn't believe how big these shoes are! I took a picture of Joshua's shoe next to mine. At this rate, we'll have the same size foot by the time he is in kindergarten!

New Pictures

We discovered last night that it is actually possible to get decent pictures of Joshua! Usually, by the time the picture actually takes, he has stopped smiling & gotten very serious. John's mom was able to get these pictures last night.

Today

This time last year, I never thought this day would come. Joshua has been seizure-free for six months!! Such a praise & blessing! There is never a guarantee that this will continue, as people can suddenly build up a tolerance to medication, but we are thankful for each day that he goes without a seizure. Our prayer is still that his little brain will be completely healed. Thank you to all of you who have so faithfully prayed for our precious one!