Saturday night and it is past my bedtime. Rob's dad drove in today for a visit. We LOVE when he visits. The kids love to have grandpa around.
Jack and Sophie had a great week at camp. I had a nice time with Derek, although he definately got bored during the last part of the week when I was de-cluttering our house. He is ready for football practice to start, he has more energy than all of us put together. He officially starts Wednesday night (why is there football practice, the first football practice on a Wednesday night when I am sure many on the team have church?) sore subject. He will miss Wednesday night, I still have to call the coach and tell him, because Jack has been invited to Dyess Air Force Base on Wednesday to be a Pilot for the day. Our family will go to the base Wednesday afternoon when Rob gets off work and Jack, Derek and Sophie, will don their flight suits and we will get to experience life on the base. We are all looking forward to it. I will take plenty of pictures, and I am sure I will put together a slideshow and post it Thursday or Friday, so be looking for that.
About an hour ago I just laid it out to the Lord, I need His joy, His hope and His peace. And as much as I am sure that He is willing to give it to me, I heard Him say get in My WORD!!!! The road to hell is paved with good intentions. I am weary and I am needing God's intervention but the fact that I haven't sat still more than once this week to be in scripture and let Him transform me with His Word is the reason I feel so empty. I am living the saying if the devil can't make you bad he will just make you busy. A couple of weeks ago in bible class this was written on the board:
If your busy today, just skip your devotional time with God.
signed, the devil.
I am heading off to open up scripture....the Psalms, or maybe the Gospels. I lift my eyes to the hills, where does my help come from, my help comes from the Lord, the Maker of heaven and earth.
July 28, 2007
Saturday night and it is past my bedtime. Rob's dad drove in today for a visit. We LOVE when he visits. The kids love to have grandpa around.
July 26, 2007
Thursday. This week has gone by so quickly. The twins (Jack and Sophie) have been going to day camp at ACU this week. I just don't think they could be having a better time. They both love their counselors and Jack is enjoying his leaders and his helper counselor. I am so appreciative of the kindness being shown to them. Jack was not able to participate in some sports stuff yesterday, so he was invited to help set up snacks and get some copies made in the camp office. He had a great time and I don't think that he could have felt any more blessed. I am so grateful.
I don't know who to thank, but we have a new roof on our house as of yesterday. A man knocked on our door last Thursday and said that he would be showing up Friday to put a new roof on our house. We have had a leak for a couple of years, that I think was there when we had to have a new roof put on about 5 years ago or so due to hail damage. It only ever leaks when it rains HARD. It would leak through our light and fan fixture in the middle of our living room. I would put a bucket under it and not turn on the light fixture for a couple of days and call it good. I realize there are many people who just read the last sentence and are flabbergasted by my lack of interest in the leak. Dealing with all that goes along with a new roof was just too much for my stress level. Fix it stuff is a stressor for me. And, this is West Texas, it hardly ever rains, and when it does it is often not that hard of rain. So my level of avoidance needed only be addressed maybe 2-3 times a year. A couple of months ago I came home to a roof that had 3 leaks, a broken washing machine, and I was driving a loaner car from the dealership because our van had officially died the day before. I did not freak out. We bought a new washing machine, a good used van, but still I couldn't call a roofer. La, La, La, La. Closed my eyes, covered my ears and just couldn't take the stress.
So thank you to whoever you are, because I wont have to have a bucket handy any more. You have taken something from me that stressed me out so much that I couldn't even let the thought live in my head for more than a moment. May the Lord bless you and keep you. Most gratefully and sincerely I say thank you. And every time it rains that crazy hard rain, my heart will be filled with renewed grattitude for your kindness and love.
A blessing of incredible magnitude.
July 23, 2007
I got some results today, late afternoon on Jack's MRI. There is no growth on the tumor, which is consistant with the last several MRI's and the swelling looks like it is still subsiding, so Jack's steroid dosages are being cut into half. Good news.
I went out for a girls nite out tonight, we ate at Johnny Carino's and then went and saw Hairspray. We laughed. Denise sang her way through the movie and it was a movie that made you want to sing and clap right along with it. It was rated PG but I thought it would be too racey to take Sophie to. Wouldn't recommend it for kiddo's.
I took bridal portraits on Friday night. I love taking bridal portraits. It is a very special time to take a portrait. There are times when everything comes together to make a spectacular shoot, the bride, the dress, the amazing storms that seemed to be going on everywhere which made amazing cloud formations in the sky. The lighting was as close to perfect as it could have been, the breeze kept it a bit cooler than a typical July and kept the bugs away for the most part. I am so grateful to the Lord for allowing me to be in the business I am in. I love what I do. To see these beautiful portraits click here. click here
I just took Jack and Sophie to camp at ACU. ACU has been kind enough to give Jack a "buddy" counselor that will be with Jack all day. As I was explaining to him Jack's physical difficulties and what Jack has trouble with I started to cry. I had tears streaming down my cheeks. I get emotional at such inopportune times. They were not tears of hopelessness or despair. I think they are tears for the lack of normalcy right now for Jack. He has gained 20 lbs in just a month because of the steroids and has no right side peripheral vision and that has impacted his abilities. Thank goodness Jack was off getting his picture made while all this was going on.
Today as I was driving home from ACU I was thinking about how normal it has become for Jack to hold my hand all the time now. He is not comfortable in his frame and his agility shows that. He never knows when he will miss a step and take a tumble, so he just walks with me so I can keep him steady. Lord willing there will be a day that Jack will not need to hold my hand to just walk without tripping, but I continue to cherish each and every time he slips his little hand in mine. I love to hold Jack's hand. It is a feeling of being there for him in his need, it is a feeling of connection with my child, it is a feeling of overflowing love that I can not even explain. If I feel this much love for my child (and children) who is hurting how much more love does our Father feel for us? I can not even imagine how much God loves us, but in scripture it tells us that it is more than we can ever love in our feeble human frames. If Jack needs to hold my hand, how much more do I need to hold the hand of Jesus to walk through my journey on earth. If I can steady Jack when he falls, how much more can God give me strength and peace in my walk with Him when I fall. I am an earthly parent to Jack, and he has complete trust in me. The Lord Almighty is my heavenly father, I pray to have as much trust in Him as Jack has in me on earth, for the love of a child is pure and trusting.
Jack continues to teach me with his love and I am so grateful to be his mom.
Thank you Father in heaven for allowing me to learn to love You more through the love of my son. Thank you for bestowing such a child in my care. You alone created his soul, you alone will call him home, but for the many years on earth that he is in my care, I pray that your will is for many, many years, I will do all I can to learn from him, and to teach him about You. About the treasure of love you have put in each of us, about choices and character, about your light and how if we will let you transform our hearts that your light can shine through our eyes because we are Your children, whom You have called blessed. In Jesus name, Amen.
July 20, 2007
It is 11:59pm. Harry Potter will be released in one minute. I am processing images from a sitting tonight and am just about done. I am about to wake up Jack and draw a lightning bolt on his forehead, he will put on his Harry Potter glasses and we will be off to the store to pick up our pre-bought copies of the book. Talk about exciting!
No word from the doctor regarding Jack's MRI yesterday. I bet we will hear Monday. Jack and Sophie go to camp on Monday to ACU. It is a day camp called Kid Quest. This will be their 2nd year and they are totally excited. I appreciate the camp as they are willing to help with Jack and his physical difficulties right now. When I signed Jack up several months ago his vision was perfect and agility fine. Now we are dealing with some challenges that could have kept him from camp for his well being, but ACU has worked out to have a buddy with him all day to help him along with his day. I am so grateful because Jack is so looking forward to it. We went to ACU to bowl today. Jack wasn't sure he could hold onto a bowling ball right now, but he did great with the lighter ball. So he will feel more confidant next week when he bowls at camp. They will swim and play and sing... along with bible study and crafts. Singing is high on Sophie's list and low on Jack's. Jack once told me that heaven didn't sound very fun to him because all you do is sing up there. I told my Nana he said that and she said that there were plenty of lakes to fish in and he could just join her because she would rather fish than sing. If I know my Nana she is singing praises to the Lord while realing in a huge catfish right now. All that said, Jack is not a lover of singing. He likes to listen to music, his favorite right now is the Beach Boys.
Well it is time to wake up my little Harry Potter fan.
July 19, 2007
Well we are home! All 5 of us. Derek is home from camp and Jack and I returned from Dallas. I have all of my family under the same roof again.
Jack's MRI ended up being later than the scheduled time. We got out of the hospital about 7pm tonight and made it home at about 10:30pm. So Derek and Sophie were fast asleep when we walked in the door. Jack did amazing again for his MRI. Every time he has an MRI you can see the scepticism in the radiology tech's eyes, they are nice about it don't get me wrong, but they are thinking they will have to rescan or deal with a moving kid when they are not sedated. After all how many kids can stay perfectly still for 45 minutes, not moving to scratch an itch or stretch even. When Jack finishes his MRI's the tech's are always amazed at his ability to be still. Today the tech was a man about 45 years old. Jack ended up being stuck 4 times before they got a vein that worked or didn't blow. Never once did Jack complain or cry. The tech said, I have never seen a child be this still, or this polite, or not put up a fight when he has to get stuck more than once. I thought he (the tech) might cry. I know I was at that point. Tears were streaming down my face. The tech asked Jack if he wanted a toy from the toy box. Jack ofcourse loved that idea and started exploring the toys. The tech then said, "Why don't you take two, you were so good." Jack just picked one toy, he said that was enough. The tech walked us out, I thought he was going to hug Jack, but he said to please come back and see him. Jack blesses everyone who meets him.
We will find out tomorrow afternoon the results of the MRI. Jack's neurosurgeon thought he looked good in his office exam today. He is noticing suttle changes in his face. If all goes well with the MRI it will be a month before we go back again. Thanks for your prayers.
Quick post to let you know that Jack and I are headed to Dallas today. He has an appt. with his neurosurgeon at 1pm then an MRI at 4pm. We will head home after all is complete. We wont hear anything back today from the MRI. I am hoping that Jack's Neurosurgeon will call us tomorrow, he is in surgery all day so I am not sure how that will work.
Dr. W. will be examining Jack today mainly focusing on the reduced amount of steroids he has been on in the last two weeks to see if they are working adequately.
Rob and Sophie go pick up Derek from camp this evening, and we should all get home about the same time.
Please keep us all in your prayers for safe driving and for me to stay alert on the roads.
July 17, 2007
I was working on my computer yesterday and I heard, "Mom, I am ready." I looked up and this is what I saw. An angel in front of me who loves bugs, fashion and barbies. I had to take a picture of what 8 years old looks like at our house. How long has it been since I have caught a butterfly and kept it around my neck until I could show my best friend how beautiful it was? How long has it been since I have picked out all of my favorite clothes and worn them at the same time, even though they might not really go together? How long has it been since I have sat on the floor with my friends Beth and Suzanne and played barbie's for hours, choosing who was going to be married to the prince or who would be in charge of the wedding?
Childhood passes by so quickly. I love what 8 years old looks like, and I love what is in my daughter's heart. She is a creative and spiritual soul who giggles and talks from the moment she wakes until the moment she slumbers. Thank you God for Sophie.
July 15, 2007
The garage sale was a thrilling success. Thanks to all the people of our church and community that blessed our family through this experience. Thanks to Barbara and Neil for all of their hard work and servant hearts. We are truly humbled by the friends and family we have that surround us.
We took Derek to Camp Velocity today at Lake Brownwood. It is about an hour drive from Abilene. It is a beautiful area and I know that this will be an exciting week for Derek. Tons of fun swimming in the lake, spending time with new and old friends, and best of all continuing to develop a relationship with Jesus that is his own.
I took some pictures of the camp and Derek checking in and setting up his bunk in his room that he shares with about 12 other boys and 2 counselors. He was totally embarassed of me, and the rest of our family. There were just so many other boys hanging around that we were definately cramping his style. So we left camp with a "Hey, have a good time." No hugs or kisses, that was definately out of the question. Had I known that, I would have smothered him with hugs and kisses before we left home, live and learn I guess. I did get a cute picture of Jack and Sophie who were willing to look into the camera without grimaces. You will see that Jack has puffed up from the steroids.
You can tell that Derek was basically trying to ignore me in all of the pictures. I didn't take it personally. Just a sign that my sweet boy is growing up. I did stay with the course, as George Sr. says, and continued my picture taking. I would not be hindered. I am not a major picture taker of my kids believe it or not. Partly because I like to live the moment and not be on the outside of it with a camera, but mainly because my kids tired of having a camera in their faces there first 5 years. But sometimes it is absolutely necessary to record an event, and I make no excuses. If I take the time to get my camera set up, loaded and fresh batteries there will be pictures.
Jack and I go to Dallas this Thursday for his next neurosurgical exam and another MRI. Don't know if it will be a day trip or if we will break it into two days. Jack is voting for the latter. But as I will not have seen Derek for 5 days and he will be home Thursday night I just can't stand to be away from him when he gets home to hear about camp. We will see.
On the way home we stopped at the farmer's market in Cross Plains. I bought these Rainer Cherries. They looked so yummy I had to take a picture of them. They are definately smiling and glad I took their pictures.
Thank you for your continued prayers for Jack.
July 12, 2007
We are overwhelmed. Our church, Southern Hills Church of Christ, in Abilene, is having a garage sale to help us with expenses that go along with Jack's medical needs, all of our Dallas Hospital trips, everything. Barbara Tatom from our church called me about a month or so ago and asked if we would agree to the church having a sale in the gym and the proceeds would go to our family. Truly, I was hesitant, as Rob says, our church has got to be getting tired of us by now. People have been so generous to our family and have carried us through this journey with Jack. But I said yes after Barbara said she had already talked to several people and o.k.'d it through the elders.
Tonight I walked into the gym and I could NOT believe what I saw. The gymnasium and several classrooms are filled with goods for the garage sale. There were a dozen worker bee's running around with the task at hand, to get everything priced and put in the appropriate place. I went to help, but ended up just crying. I would get my focus and turn around and someone else would be bringing something in or wishing us well and I never even got to price one thing. Rob and I are truly humbled by the family at our church that surrounds us. We just don't even know where to begin to say thank you. Thank you. Thank you Barbara and Neil for being the detail people behind the sale, thank you to the people of our church who have donated, and thank you to the people of other churches that were bringing goods in tonight, and a church in Brownwood that is bringing goods in to Abilene tomorrow. Our words are not enough to explain the overflowing in our hearts or the tears that streak our cheeks for the love that you have shown us. We are truly blessed.
Jack said to me, "I never dreamed the garage sale would be so big!" We didn't either.
People will continue to prepare tomorrow, Friday, and the official sale is on Saturday.
If I could write thank you a hundred times it still wouldn't be enough. May God bless you for all you do for those who are weary, right now that is us, but your love lifts us. You are Jesus with skin on to our family.
July 11, 2007
Hello. We have been counting down the days and now we are counting down the hours until we go see Harry Potter and the Order of the Phoenix. 3pm today we will be at the theatre.
Jack is doing well, he asked yesterday when his chubby cheeks would go away. I just told him once he gets off the steroids things would go back to normal, although it will take a bit of time. I love his cheeks whether they are chubby or not. He is such a trooper.
Jack continues with the E-Stim at physical therapy. This is a machine that is connected to electrodes that are attached to his face on the side that is not working, and the electrodes deliver impulses that make the muscles work involuntarily with each pulse. The physical therapist will finalize where the electrodes need to be attached, then they will loan us a unit for me to do daily treatments with Jack at home. I am anticipating daily treatments I think they will help alot.
Sunday night Jack was at Friends Adventure and one of the activities was blowing bubbles. Rob asked Jack how that went, and he said "pretty good, considering only half my face works. "
I continue to be hopeful that this trial is on the downside and before we know it we will have some time behind us and we will be hearing the news that the gamma knife radiation did it's job and it killed off the tumor. But each day between now and then we will cherish like no other, for we never know what tomorrow will bring.
God has been SO faithful to us, through his peace and comfort through His Spirit, and through all of our friends and family that minister to us each and every day. What goodness that surrounds us.
July 10, 2007
Tuesday morning. Jack is doing pretty well these days. Our house is anticipating the release of the Order of the Phoenix tomorrow in theatres.
The next couple of weeks the kids have camp, Derek's is next week then the twins the following week. They are all excited about that.
We went to the pool yesterday and it was glorious.
Nothing major, but I just wanted to check in and give a quick report on Jack.
You can click here to see a slideshow of pictures from the wedding in Alabama. It was an awesome trip.
July 05, 2007
Quick post from the Mobile, Alabama airport. Just talked with Rob and he said the MRI went great, and Jack did very well. The Neurosurgeon told Rob that the scans looked good. We will be cutting down Jack's meds to half doses, and we will be going back for the next MRI on the 19th. The tumor looks smaller.......praising God right now. Blessings to each of you, keep on praying!
July 04, 2007
Happy 4th of July!!!!
One of my favorite things about the 4th is watching Wimbledon on TV. Those Williams' Sisters are amazing. They are so strong, I love to watch them play. The announcers have been a bit spiteful while talking about them and their families, and as I don't follow the tennis stuff like I used to it could be earned criticism, but I still like them. They have personality and their families have personality in what seems like a sport that has had few and far between personalities that stick out in the crowd of white tennis outfits.
Rob and Jack just drove off to head to Dallas. Jack has his MRI at 7:30am, July 5th. Then his neurosurgery appt. at 10 am. I couldn't go this time because I am shooting a wedding on the Gulf Shores of Alabama. I fly out tomorrow morning and will be in the air during all of Jack's appts. Please keep Jack and Rob in your prayers for a safe trip there and home. There is room at the Ronald McDonald House which is a good thing, so they will be in familiar surroundings.
Derek, Sophie and I will have a fun time today then church is having an ice cream and cookie social tonight.
I wont be able to blog until Saturday night or Sunday, so I will let you know how Jack's appts go at that time. Please pray for his continued healing.
July 03, 2007
July 01, 2007
Sunday afternoon the sun is SHINING. We are going on a half a day of sunshine in Abilene. Not normally blogworthy but in June and no sun for over a week has us loving the sun. Many of our friends live in the flood zone and so we are glad for them when the rain stops short of flooding. The green grass is lovely and the tree's are in bloom.
Jack is doing well, still reserved, still not really looking people in the eye, but he is doing. He has done and said several things that have made me weepy. He is settling into his new normal. He is never weepy mind you, and that is what makes me weepy. He is strong and brave and has the resolve of a hero. God has made quite an amazing young man.
Today I am counting a couple of my blessings.
1. I have a wonderful supportive husband who loves God and his family to the utmost.
2. I have 3 wonderful children who consistantly obey and are kind and show love to others.
3. I have a church family who daily lifts our family to God in prayer.
4. I have friends who stick with our family even when it is really hard to deal with all that is going on. It hurts to be close to people who are suffering. You know who your real friends are when they cry with you, rejoice with you, and point you to heaven.
5. I am grateful for each moment and every ounce of love in my family.
6. Most of all I am grateful that no matter how sad or lamenting I might feel that I can stand in the promise of Jesus. That someday He will call me home and I pray that I have done and said and felt things that have made him grateful for me.
On my hardest days I can take this list above and it brings me to my knee's in thankfulness.
I am thankful for you. For the friends that see us through. For our friends that we have not met that read this blog and have taken Jack into their hearts to be comforters and encouragers through prayer on his behalf.
Twice this week two different people told me that they were talking with people that crossed their path and Jack came up. They don't know us but they read the blog to follow Jack and his journey. These people pray for Jack and I am blessed by their caring hearts. They love my child and send his name up to heaven in prayer.
I am blessed by you.