Day 18 – Caleb’s New Friends

Caleb's Dad ~ 28th November 2010

Well, as it has become customary here during our normal routine, Sundays are the days when Caleb is the most tired. He was so asleep this morning when it came time to wake him up that he got quite grumpy with us as we were saying his name and rubbing his belly.

After a few attempts of prodding him to move he would, every time, quickly slip back into his deep slumber.  Alas, we gave up and decided to let him sleep as opposed to going to his speech therapy.  As the therapist told us, sometimes its best just to let him sleep.

We let him sleep in about another hour and a half and after he got up, (now much more chipper than before), he sat over on the couch with mommy as she serenaded him with some songs. We  turned on some children’s Bible songs and sang again, praising God with “This Little Light Of Mine” and many other songs. After some time, Caleb wanted to get some more rest and so Tiffany cuddled with him and slept a little longer.

After some good rest it was time to hit the mat again. The therapist came to our room to escort us down to the gym.  We received the happy news that Caleb was supposed to have a joint therapy session with our dear friend Isaac, who is the 9 year old boy that we have talked about a lot on Caleb’s Facebook Page.

Just to give a little back story on Isaac, here is a short synopsis that I got from his mother:

Isaac was skating in the basement on August 12th when he fell and hit his head and seemed fine by all accounts and was acting as if nothing had happened. On the 13th while fixing a pop tart he and his brother were scuffling and Isaac fell and wasn’t responding. Eli called 911 and Isaac was flown to Vanderbilt. At the time we knew nothing of the accident on the 12th. When he was able to talk a few days later he told April about the accident. They placed a shunt in his brain to relieve the pressure and Isaac was fine at that point. We went home late on the 27th had his B-day on the 28th on the 29th Isaac was watching a movie with me that he got for his b-day and he started saying that his eyes were hurting and he got sick. Within minutes we were on our way to Cookeville Hospital where they did a CT scan and flew him back to Vanderbilt. They immediately placed an External Ventricular Drain (a temporary fix). Within the next day or two they found an aneurysm and coiled it. Apparently when he was roller blading and fell hitting his head it caused a blood vessel to rub a bone in his head and formed the aneurysm. Again Isaac was fine and talking walking eating etc. They went in to replace the shunt that had clogged because of the blood on his brain from the aneurysm bleed. The surgeon came out and told us everything went fine and we should get to go home the next day. They took us back to recovery and Isaac was crying and complaining about his head hurting and he said “he didn’t want to die” they gave him some pain medicine within the next few minutes he started having trouble breathing. At this time we had to leave they took him back to the OR and his aneurysm had bled again they fixed the shunt again and recoiled the aneurysm. It was at this time that Isaac became debilitated and has been recovering since. He was transferred to Children’s Hospital of Atlanta on Oct 22nd.He has had several MRI’s. There has been little change between the first MRI in late August and the last MRI in mid-October. The neurosurgeon said that there was nothing in the MRI that would explain exactly why he did not bounce back like he did the first two times.

The Tinch family has been at Scottish Rite hospital for many weeks longer than we have.  And, though his injuries were worse than Caleb’s, the Tinch family has seen a number of miracles themselves. Isaac is able to fixate his eyes often, close his mouth, and even sometimes in the morning as he is waking up, say a few words.  The Tinch family has become very special to us as we have shared our stories over the last few weeks.  They and their other two children are among the best you would ever meet, and their faith has also been amazing.

We were excited that we were going to get to spend some time with Isaac this morning.  But, as the therapist approached Isaac’s room, we found out that he had been throwing up profusely, nonstop nearly since their outing.  One of the things they do here is, when they think you are ready, they will take you out and do a therapy session with you in the context of a field trip.  For Isaac and his family, their outing was to go to church.

Isaac has been suffering from stomach problems ever since his injury, and today, as they made their way to church, they found that all the extra stimulation aggravated the problem.  He had thrown up all through church and was still having problems with it as they were trying to get ready for therapy.  So we went on to therapy while Isaac’s mom worked to clean him up and calm him down.

Isaac’s little 3 year old sister tagged along with us to help with Caleb’s therapy.  She is a sweet little girl, always smiling, always wanting to play and be a part of what is going on.  We sat down on a mat which was outstretched on the floor, with Caleb and me on one side—Caleb sitting criss-cross applesauce,  and Emma on

the other.

The therapist directed the play and instructed Emma to start rolling the ball to Caleb. Caleb, as we have seen numerous times now, as he has played with the ball, loved playing ball.  He would have his eyes fixated outward about midlevel in front of him, not really able to see the ball as it came rolling into his lap.  But once it was there, and once he could feel it touch his inner thighs, his smile would light the room as he would laugh and grab the ball with both hands.  Almost immediately once he had the ball he would twitch both hands up into the air, throwing the ball as hard as he could. He loved every minute of it.

After some time of playing ball, and after Isaac’s dad came to get Emma, we worked on helping Caleb learn how to crawl.  Getting on all fours and actually crawling has been something Caleb has resisted quite a bit—being very uncomfortable with using his upper body strength in a way that makes him feel like he is going to fall. The therapist came up with a wonderful idea.

She took out a towel and folded it so we could lay him on it, with the towel being like a strap under his chest.  She then had me hold both ends of the towel, standing to his side, while she kept him in the all fours position and helped guide his feet.  Once we did that, and once we alleviated some of the fear and muscle use for his upper body, he took off!  He started crawling all over the mat, moving his legs correctly, bringing one knee up, then the other, and then the other. Every now and then, he would relax his arms and dangle himself, resting his upper body on the towel I was holding.  I could tell he really just wanted to play rather than being tired.

We let him take turns, playing with dangling on the towel and then directing him to push with his hands, and support his body and crawl some more.  We did this for a few minutes and the therapist was overall, very pleased.  I thought it was a fantastic idea as it allowed him to do the movements of crawling and then over time become more confident in his abilities. He did great and he loved it.

After his movement group therapy we were left on the mat to wait about thirty minutes until it was time for occupational therapy.  OT today was to be held in the gym, so we figured we would just sit on the mat and play for a while until our next therapist came.  It was then we made a new friend..a little three year old boy by the nickname “Pinky.”

Pinky and his dad were on the mat next to us as they were working with their therapist.  She asked Pinky’s dad if it would be ok to engage his son in a little play time with peer, and then asked us if we minded.  We both agreed and thought it would be great.  So Pinky’s dad carefully brought him over and placed his son on the mat opposite us.  The therapist situated herself to Pinky’s right and readied the little ball that we had been playing with.

Let me tell you a little about Pinky.  Pinky is a little boy, African American, who is three years old. When I first saw him a couple of days ago it was one of those situations like I wrote about previously, where you would see a child who had suffered some type of trauma, be in a wheelchair, and you wouldn’t know what to say.  I had already said that God had moved my heart in regards to that and that now I felt compelled to bend over, smile, and speak to the child and the parent, commenting on how beautiful they are.  When I first saw Pinky, I could tell God was really challenging that new inner conviction.

When I first laid eyes on the little child a few feet away from me, I wanted to cry.  The way the father told the story, his family, which included his three children, had all been in a house fire.  They all made it out alive, including his three children.  Two of his children had been burned badly.  His third son, the three year old who had forever been lovingly nicknamed “Pinky,” had been burned beyond recognition.

As I looked at him, there was little that would help you recognize his proud African American ethnicity.  All of his smooth brownish beautiful baby skin that had once packaged his son, was now gone, replaced by very pink and light brown tatters of scar tissue. His ears for the most part were burned away.  His left arm was burned away.  His right hand had also been burned away as well as most of his eye lids and mouth.  His tongue constantly flared downward to try to wet his perpetually chapped lips and his eyes stood out profusely, unable to retreat and hide under the scant remnants of his eye lids.

Miraculously, he could still see, as well as talk.  He still wanted to be active like any three year old, even once giving his dad a fist bump as he was proud of himself for pushing the ball with what was left of his hand, after Caleb had rolled it to him.

I stuck to my previous commitment and did what we should all do and that is smile with him, laugh with him, and tell him how awesome he was.  As hard as it was, I’m sure, for his little scar tissued face to do, he loved the praise and did his best to smile right back.

Caleb and Pinky played hard for the thirty minutes that we had together.  After we were done, I was so glad to be able to spend that time with him and his dad.  It was another reminder of just how blessed we are.  There are so many people who lose their children, but for whatever reason, in all the tragedy that we have all faced, we have been graced to have ours still with us.  I know Pinky’s dad is just as proud of his son, as I am of mine.

I did have a lot of thoughts during that thirty minute session. Thoughts about the horrors that so many children go through in this world. Thoughts and wondering about how many kids there are in all the hospitals, all over the world, who are suffering through things like Caleb and Pinky. Thoughts about the vanity of racism, when skin color really is only skin deep. Thoughts about the plan and will of God, and the grace and forgiveness of God; thoughts about love and peace, and hope and joy.

After OT, it was time to go to music therapy. Mommy started doing a new thing with Caleb today.  Instead of strapping him in his wheelchair, mommy decided that it was time to walk to each therapy session.  Tiffany scooted a swivel stool behind her and positioned Caleb’s safety belt around his chest and off they went.  Caleb loved it! One thing we have really noticed since the beginning is that Caleb loves to practice walking.

So, Tiffany stayed close behind, holding his hip with one hand, and his hand with the other, and aided him in walking all the way from the gym to the music room down the hall—quite a long walk mind you! But he did awesome, and again loved every minute of it.

Among some of the things to note during today’s music therapy, Caleb sat up in a little chair all by himself, just like a big boy! And, he was able to do it for the whole thirty minute session!  Let me tell you, he was sitting straight up, chest poking out, and with a very proud smile on his face!

As the music saturated the room, Caleb kept tempo by tapping his feet on the floor. It was so cute to watch because he really was trying to move his feet with the rhythm of the music. Tiffany placed bells in his hand and he shook them to the music as well.

After music therapy, Tiffany moved her swivel chair behind Caleb to begin the long journey back to Room 355. She left the music room, headed down the first hall, turned to the left, came all the way down the second hall, past the main nurse’s station, and finally came to rest at the perfect resting spot…a large aquarium near the next hall that leads to our room (at the end), an aquarium filled with turtles!

After Caleb’s brief stop at the aquarium, they then began the walk down the final hallway to our room. Once they began down the hall, I heard them coming as I had been in room working on a few things. I came out into the hall and there was my little guy, working hard putting one foot right next to the other. I spoke loudly, “Hey little man!  Look at you!  You are doing so good.  Are you coming to see daddy?  Come on…come and see daddy!”

I threw my hands up and as he heard my voice he had a moment where he was so excited he was literally breath taken.  He began to laugh and jostle his body about as his mom struggled to hold her grip on him.  He put one foot in the front of the other, faster and faster, until he almost stumbled as he tried to run to me! “Whoa, slow down little man,” Tiffany said, as she chuckled.

He walked valiantly, even with a snap in his step, as he came close and fell into my arms.  I hugged him tightly, telling him how proud I was of him. He too was quite proud, clapping his hands together with joy.

For the rest of the night we carried on with our regular activities.  He ate dinner, played, and got ready for bed.  There were a number of things that I do want to report that happened tonight.

One of the things we like to do with our kids, especially early on when they are very little, is  put our hand over their mouth and do what we call “the wa wa.” The wa wa is basically doing what we knew as kids as making an Indian yell, or “sounding like an Indian.”

Ever since we started rehab, as a way to foster vocalization in Caleb, I worked on wa wa every night. Tonight, we had the privilege to see Caleb really start doing the wa wa!!!  Every single time we did it, he in kind wa wa’d away! I think we have foud a new favorite activity for Caleb!

Also during play time, he tracked the light really well; both in his right and left field of view. He moved around on the mat by himself, able to turn himself in nearly a full 360 degrees all the way around, scooting himself carefully with his hands. He laughed and played a lot on his own.

One thing that makes us so joyful is that we are beginning to see some slight hints of normalcy in his play time.  You can tell when you watch him play that he is genuinely content, and really starting to want to engage and laugh, and have fun.

As he was getting ready for bed, I got the privilege to hear him say dada again! As Tiffany was getting ready to read books to him and brush his teeth, I came over to give him a kiss and stand with him near the bed while Tiffany went to get the books.

I began tickling his tummy and kissing him on his ribs, making him laugh.  He chuckled hard and at the end of his laugh, as he was coming down off of the laughter, he said, “Ahhhhhhhh…Dada.” Oh man, I loved it.  Now, I have heard my name two times!!!

Then, if that wasn’t enough, after Tiffany brushed his teeth, just like he would when he was at home and didn’t like to brush his teeth, when the process got boring to him, he said out load, “All done…

Again, it was one of those moments where Tiffany and I looked at each other, smiled, and then laughed.  Yet again, before bed, he takes our breath away and makes our heart leap.

And, so we come to the close of another day.  It’s been a wonderful day.  And yet I am also saddened because tonight I don’t hear the laughter and cooing of Connor, and I don’t hear the “Hey dad’s” of Colby. They left to go home yesterday.   We enjoyed having them here so much over the last few days and it pains us every single time we have had to say goodbye to them.

We have had to say goodbye a number of times now, and each time we have had to watch as Colby sobs and throws his arms up begging us to keep him with us as the car drives away. There is nothing that tears your heart out more than when your son asks you why you don’t want to “keep” him.

We have had numerous talks with him and each time he seems to understand more and more about why we are doing this and what it all means.  So about an hour before it was time for our kids to go back home, I did what we have done every time now, which is sit down with Colby and explain why he is going home, and what to expect.

“Hey buddy, want to go downstairs with daddy and get a snack and some chocolate milk?” For any who knows my oldest son, they will know that he never misses a chance to get some chocolate milk. “Sure Dada!” he said with a grin as he hopped in the back of a Radio Flyer wagon. We “raced” down the hallway, making car sounds, and having fun.  We went into the cafeteria and got Colby a snack and some chocolate milk.

I thought it was very fitting that as we sat down at a table in the now near empty cafeteria, that on the big screen TV on the wall was playing the movie Cars (Colby’s favorite movie). I said, “Hey buddy, let’s talk for a minute.”  By now, he already knew what that meant.  As he answered his face looked down to the ground, already anticipating the next words that I was about to say.

“Buddy, I just wanted to let you know that in about an hour you are going to be going home again, this time with Todd and Emily, ok?” His voice immediately began to crack as he said, “No…I don’t want to go Dada.  I want to stay with you.” I said, “I know son.  I know.  And I love you so very much.  But you remember why we are here right? We are here so we can help brother get all better.” He said in reply, “But I don’t want to go.”

I changed the tone of my voice and spoke in a more upbeat way. “BUT, hey listen.  This time it is going to be different.” I could tell he was curious as to what I was talking about. I said, “This time, you are going to go home, and you are going to be there for a few days, and then you are going to come back again in about a week, and when you come back, then you are going to be with us for a whole week, and then guess what?!”  He said, “What?” “THEN, you are going to go home with mommy and daddy!”

It was so cute to see him try to understand time.  He heard the magic words, but couldn’t quantify how long a week was.  He said, “How many days is a week?” I said, “Seven days, and then you are coming back to be with us, and then you will never ever have to go and stay at any one else’s house…you will go home with me, mommy, Caleb and Connor.” “How long is seven days?” he said.

I tried as best as I could to explain the time frame to him, but it never made that much sense.  He was just happy to know that he was going to be able to go home soon. I had thought I might wait to tell him about going home as I know the discharge date they gave us is always tentative until it gets closer to the date and they verify that yes, indeed they are going to send you home.

We have heard from many families here about getting discharge dates and then not actually going home.  But, I sensed that the discharge date we had would most likely not change.  The date of December 7th, 2010 has been set for at least a week now, and we hadn’t heard anything so far.

(By the way, I later realized that we were much closer to the 7th than I thought, so I kind of told Colby wrong. I suppose that since we are so close to the 7th, if nothing changes, then we won’t have them up here again, we will just go home and meet them there.  So, we are hoping and praying to go home on the 7th!!!)

After an hour went by and after we watched Lightening McQueen win the Spirit of the Piston Cup, we made our way back up to the third floor to meet the rest of our group, as we all then, made our way out to the van.  It was hard again, as Colby began to cry, holding his arms out asking to stay.

I kept reminding him of our conversation, and about how this would all be over soon, and that the next time I see him we will never be a part again. My words didn’t seem to comfort him as well this time.  We said our goodbye’s and again, watched as Colby wiped the tears from his eyes as they drove off.

Tiffany and I stood there for a moment in the cold dampness of the parking garage.  “I hate this Tiffany. I am so ready for this to be over—for all of us to be back together again in our own home.” I said, ready to cry. Tiffany replied, “Me too…me too.”

Prayer requests for tonight…please pray we get to go home on the 7th.  Pray for Colby and his little heart and that we will all be together again soon.  Continue to pray for Caleb’s eyesight and for his speech.  Thank you.

Blessings.

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10 Comments

  1. heather davis

    December 2nd, 2010 at 11:27 pm

    once again i enjoyed reading your post as always so glad to read everynight about little caleb doing better and better,my heart aches for colby as he dont fully understand why and just wanting his family back together but so happy that yall are going to be whole again really soon praise the lord!!!!!!!!

  2. Donna Wood

    December 3rd, 2010 at 4:11 am

    And again, I sit here this morning with tears streaming down my face….tears of joy for the wonderful progress Caleb is making, the beautiful parents you are to ALL the boys and the majestic God that loves us so much. AND for Colby……..His little heart knows how very much he is loved by both of you. Soon, VERY soon, you will all be together under your roof again. I am rejoicing and so excited for that day, as I know you all are. Much love to and for you all today.

  3. Carla

    December 3rd, 2010 at 7:45 am

    I know we don’t know each other but I feel as if we do. I cry tears of joy daily and pray for your family. I wanted to share this link with you. It was wonderful and finds a good way for me to say thank you for sharing your son’s and family’s journey with us.
    http://www.openmyeyeslord.net/theseasonsoflife.htm

    Blessings,
    Carla
    Franklin, TN

  4. Shaun Kemp

    December 3rd, 2010 at 7:46 am

    I just found your site through Fark a couple days ago. I’m a parent too, I’ve got a 7 year old, a 4 year old, and a 1 year old…and sometimes when you’re describing Caleb, it makes me think of my 1 year old Trey. I am so thankful that he is progressing so well, and I’ll pray for him to continue getting better and better each day. My 4 year old daughter had a rough start to life, so I know what it’s like to be in the hospital and away from your other kids (she was born with a cleft palate and had to go through corrective surgery at 11 months.) tho I couldn’t imagine being away from them for as long as you have. I know it’s hard, but God will keep you and your family strong through this. Thank you for sharing your story….and I’m going to give my kids and extra hug and kiss tonight on behalf of Caleb.

  5. Tammy Shaver

    December 3rd, 2010 at 8:40 am

    You guys continue to amaze and inspire me. You are such a wonderful example of the family God intends for us to have and to be. I am very thankful to God that I have been blessed with that kind of family as well. And it’s not just Colby that doesn’t understand how things go and have been but at least as an adult Chrisitian, I know God has things under control and will lay all doubts and worries aside if we just trust and believe and continue to have faith.

    I can’t wait to meet you guys in person….I already feel like I have. :)

    with much love,
    Tammy

  6. Sandra Rose

    December 3rd, 2010 at 11:39 am

    Thank you for keeping us up to date on sweet, little Caleb’s progress. I look forward to your daily descriptions of all the Lord is doing in your midst. I know it must take a lot of time to write this blog, but I am grateful for the updates and for the privilege of being able to partake of the godly wisdom and inspiration you are gleaning through this trial. I believe God has expanded your ministry in ways you never could have imagined. People all over this country who would never have had the opportunity to hear you preach have now been able to be inspired, taught and challenged by your dedicated walk with Him through this very rough storm. We’ve been encouraged by the answered prayers and by your dedication to give God the glory through every aspect of this journey. God has taken what can be characterized as a great tragedy and redeemed it into an opportunity to display His goodness, His love and His compassionate care for His children.

    I know God has a plan and a future for Caleb, and there is no falling rock large enough to thwart His purposes for this precious child. I will continue to pray for him and for comfort for Colby and the rest of your family while you are separated. God will redeem the time that you have been apart and turn all the heartache around for your good and for His glory.

    With fervent prayers from Chattanooga,
    Sandra Rose

  7. Karen Dorroll

    December 3rd, 2010 at 1:11 pm

    Hello Brown family, Baby Caleb and your family’s journey have touched so many people’s lives…reminding and impressing upon us all to totally put our trust with God as he is in total control! Praying for Caleb has blessed us all…a neighbor and friend shared your story with me and she prays for him daily and posts your journal entries to all her Facebook friends. I shared the story and requested prayer with all my friends and my entire church and Caleb is in all of our prayers. A person in my life I shared you all’s story with shared it with his Sunday School last week and had just taught the Bible verse, Psalm 91 on November 21st.

    Last week they talked about Caleb and his miraculous, continuous healing. One of their members, wrote today sharing this beautiful Bible verse. 1 Peter 5:10 NIV “And the God of all Grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm, and steadfast.” God is healing Caleb and we are all witnessing your family’s journey. Caleb’s life is helping us All to become stronger in God’s Word…Our lives will never be the same because of one little Boy. May Caleb and your entire family continue to be Blessed!

    With warm regards, Karen

    • Tim Brown

      December 3rd, 2010 at 5:23 pm

      Karen thank you so much for those kind words. God bless you and your family as well.

  8. Janet Fabus

    December 3rd, 2010 at 9:50 pm

    God is so good. He is Caleb’s healer. God is amazing!!!! HE cares, Loves, and gently, skillfully cares for Caleb and your family. These are the Days of Living Miracles. We watch each day, just likes folks did back in bible times, seeing and hearing of great miracles. My prayer: In Jesus’ name, Caleb will be 100% healed, and SOON! Father God, I thank you in advance for Caleb’s total healing. Praise be to God. AMen.

  9. December 3rd, 2010 at 10:41 pm

    Janet Fabus
    December 3rd, 2010 at 9:50 pm
    God is so good. He is Caleb’s healer. God is amazing!!!! HE cares, Loves, and gently, skillfully cares for Caleb and your family. These are the Days of Living Miracles. We watch each day, just likes folks did back in bible times, seeing and hearing of great miracles. My prayer: In Jesus’ name, Caleb will be 100% healed, and SOON! Father God, I thank you in advance for Caleb’s total healing. Praise be to God. AMen.

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