The Pear Tree

We have this ornamental pear tree in our front yard.  Since we moved into the house, it has become one of my favorite things in our yard.  All year it has a beautiful shape with branches which reach up to create a cone shape.  And for about 2 weeks every year, lovely white flowers bloom all over the tree.  During this time, I love to walk out and smell the fragrance hanging in the air.  It makes me remember Spring has arrived, with new life all around.

Last year I heard this terrible noise out my front window.  I looked out to see the power company was cutting branches off my wonderful tree!  After they were done butchering the tree, I wanted to cry.  It was no longer perfectly shaped, and it looked horrible.  They literally cut the center right out.  Later that summer it became infested with tent caterpillars.  Every time I looked at that ridiculous tree I cringed.  If only they would have cut the whole thing down.  Then I could have planted a new smaller tree that would look perfect!

As I walked out my door the other day, there was that tree. And oh there was that smell!  I looked up at all the glorious flowers.  I did not see any hole, or tents.  All I saw was beauty.  Now there is still a large hole in the center, and the tents will be back.  But the tree did not care, it just kept growing!

God has such a funny way of showing me the importance of living through all the junk around me.  This week has not been one of the best.  On Easter, we headed to my mom and dad's for lunch after working all morning at Church.  I was ready to sit down, relax, and enjoy my fam.  During lunch, Chan fell and cut his head open.  We spent the afternoon in the ER getting 3 stitches.  Then on Monday, we found out someone had broken into our home and stolen some things.  We are not sure when it happened, and can only assume it was while we were in NY.  Also on Monday, we received word that Tim's plant was closing.  I was talking to a friend of mine and told her I was waiting for the other shoe to drop.  She said, "There is no other shoe, there can't possibly be another shoe!"

Seeing the tree made me realize, it does not matter what happens.  What is important is our family refuses to stop growing!  We may not always look pretty, but God has a plan for us.  He wants us to bloom and show his love to others.  He wants us to reach out to those who need us.  The other day at work we were talking about Luke 19:39-40
"Some of the Pharisees in the crowd said to Jesus, “Teacher, rebuke your disciples!" “I tell you,"” he replied, “if they keep quiet, the stones will cry out.”

I wanted that tree down so badly last year.  I looked at it with such disgust. Now I look at my family and realize how much God loves us in our moments of hardship, moments of "un"beauty.  It is so easy at these times to turn our eyes away, to feel abandoned, forsaken.  But if we allow ourselves to do this, we will never bloom again.  We will never have new life springing from us.

I have been so encouraged this week by friends and family!  People praying for us, and sending encouragement our way.  The truth is, we are blessed!!! Chan only needed 3 stitches, and now they are out and he is back to full speed.  The things that were stolen are things.  Plain and simple.  And Tim's company looks like they are not through with him yet.  We don't know long term what will happen, but God leads us to where we need to be.

 My sister in law shared this first video with me early in the week.  Fail us Not  It reminded me that we all walk a different, but hard journey.  The reality- He never fails us!  My wonderful babysitter and friend shared the second video. While I'm Waiting  I had not told her the tree story, and yet...she sent me this video!  While we wait, we need to praise.  How else will we hear him when he answers?  I hope you take a few minutes to be inspired my each of these!

Why Does She Wear That Thing on Her Neck?

Brooke has become accustomed to wearing her collar, in fact she likes it.  She tells me her head feels better when it is on.  She wears it all the time when we are out and about.  It helps and she does not mind.  Plus it makes me less nervous if she is bumped or falls down.  Every once in awhile you will hear a child say, "Why does she have that thing on her neck?"  And the normal response from the parent is "I don't know?"  I thought I would write this blog post to encourage parents.  Take some time with your kids to learn about disabilities.  Their are so many great books at the library that can show kids pictures of children with various disabilities.

It is so important for our children to understand that children with disabilities are no different then the rest of us.  Many of them just use different tools to help them- walkers, wheelchairs, collars.  I am so proud of Brooke and how well she handles the people watching and asking questions.  Some days she becomes annoyed and I just tell people she is tired.  I sometimes wonder how she does cope.  I mean yes, she is doing well and can do many things.  But I know it bothers her that she is restricted from so much.  Sometimes I feel bad saying no stop doing that. Brooke is a trooper though!

Now that we have settled back into normal, I am going to make the appointments with a gastro doc and the orthopedic surgeon.  I am thankful the surgery went well, but am disappointed that only one thing(out of 4) was fixed.  We knew this might be the case.  And so we trudge on. 

Praying you have a blessed and wonderful Easter!

Let's Go Fly a Kite

A little known fact about me is my favorite actor is Dick Van Dyke.  In fact if there was one living person I could meet, it would be him.  Many of you probably are thinking, Hmmm!?  But I love his old movies and tv shows.  Not only does he make the normal magical(Mary Poppins and Chitty Chitty Bang Bang), he can make regular life funny.  And most days, I need that.  It is good and wonderful to find humor and mystery in life.

Since we have been home, life has been forced back into normal.  No break, no breather.  I was so thankful to have Sunday off, and such an amazing group of friends who covered for me at work.  But later on Sunday...even with the nastiest of colds, I had to run out for groceries.  It was a beautiful, kite flying day.  And as I passed a park, there was a family flying a kite.  I watched them with jealousy in my heart.  Why did it always seem life was in crisis mode at the our home?

Sometimes I feel like I barely recover from one thing before being thrown back into another.  I drove with tears in my eyes thinking about all the "stuff" that needed done.  Of course regular everyday things.  But my mind wandered off to another situation we had thrown at us last week(I can't go into detail).  Then I thought about Amy, and how much we love her, but how hard it is for her to come to our house to stay. Then I began to think about our house and how we have to figure out what to do about the foundation and many other things happening to it.  And my mind wandered to Brooke and her new symptoms. 

I wanted more than anything to just take my family and go fly that kite.  To let all those worries go.  That night I sat at the dinner table with my husband and children.  I realized how fortunate we are to have a home, an income, and a family.  It is not easy and it is not always happy.  But sitting there with my family it is amazing!  We may not always have tea parties on the ceiling or a car that takes us to magical places, but we manage to find a smile amongst the chaos. 

Balloon Fun

This is a cute video of Brooke and Chan.  Just one week ago she was in surgery!  Amazing!

Smiles and Laughs

The past few days I feel like I have posted not so bright and sunny posts.  We have seen many miracles but had some for rough patches.  Surgery is never easy, and when it involves a child it becomes harder.  My heart goes out to all those parents and children who spend their days in hospitals and care facilities.  When we are at the hospital, I am reminded of the miracles in our lives.  I am reminded that each smile, each laugh is a treasure!  It is those moments that carry us through the pain and heart ache.

Please know we feel blessed to be surrounded by happiness and hope!  I have people tell me how strong I am, how strong Brooke is...but you are the ones that help us carry this burden!  I do not think I could do it with out a wonderful support network and my faith.  I see poor children suffering without a parent to hold their hands, moms sitting up all day and night with their child with no relief, and many people with out the hope of a loving God to see them through.  And all I can do is pray.

I am wanted to post some more pics of smiles....because they really are the best medicine!  I am thankful for all the great people at the hospital and RMH that brought a smile to Brooke and my face!  Her Anesthesiologist was amazing!!! I loved her last one and did not think he could be beat, but this guy was wonderful too!  Her nurses were caring when needed and firm when needed.  The Child Life specialist were sweet and came to the rescue so many times!!  Miss Michelle was her BFF and Brooke cried when she thought she would not see her again.  And wonderful, amazing Dr B!  He can't sing his praises enough!  Brooke loves him! That there speaks volumes.  And Tim and I are so thankful for a down to earth doc who can sit and chat with us like a friend.

Miss Michelle and Brooke!

What a blessing!  I am sitting here while Aidan, Brooke and Chan play.  What a beautiful gift to be a mom, even on the really bad days!

Proud Mama!

We are happy to say we made it out of NYC!  We came to my aunts in NJ for a few days before heading home.  Brooke will have sme time to rest before we drive home.  We met my dad, brother, sister and Aidan here.  Good to have all my kids again!  Now just need the hubby!

I have to say I can not believe my little lady!  Brooke is now off all her meds and walking like a champ.  She has some pain and soreness.  She is also having some numbness in her left leg and it keeps falling asleep on her.  But all in all doing well.

Took her to a salon today to have her hair washed.  She loved being pampered.  Then she wanted to go to Walmart to buy some special gifts for her new little friend at the hospital.  We found a cute light up story and she decorated a t-shirt for him.  Then she wanted a movie to leave at the hospital for the kids.  We took it up to the hospital and dropped off.  She told me while leaving, that her heart was sad that her friend did not have a family.  She told me she would always remember him and pray he found a good place to live.  My heart smiled at her compassion.  Brooke was able to see Miss Michelle one last time, which made her very happy.

Thank you all for prayers and encouragement!  It has helped more than I can say.  Brooke met  new little friend at the RMH yesterday.  She is having surgery tomorrow. If you could keep her in your prayers, Brooke and I would appreciate it! 

Surgery Day 4 and We are Out!

Wow, so sorry I have been terrible about updating.  This has been a hard few days. Brooke really struggled while in the hospital.  For some reason, she was super sad this time, and I think she thought she was never getting out.  It was very hard to leave her, even to go to the bathroom.  She sobbed a good part of the time and clutched to my hand.  We made some progress on Saturday, but then that night at 8PM they had the brainy idea to move her to a new room.  The children's area is very small and they needed her room for the monitors (since she was now off them).  But she had already gone to sleep and her room was decorated and it broke her little heart.  The room was very tiny...only the bed and chair fit in.  It was also darker and it scared her.  Poor girl did not know what to think.  She kept crying to go back to her old room. 

I also think she was more scared because of her room mates.  Our room mate last time was a real treat...but this time her room mates broke your heart.  She shared a room first with a teen age boy who had some kind of brain surgery and was on ventilator and other monitors.  Brooke kept asking if she was going to have those tubes.  Also she met this precious little baby in the playroom.  He was about Chan's age and was also on a ventilator.  He would perk up and smile at Brooke.  She thought he was very sweet.  She even declared she might marry him!  Once when we were walking the hallway, she noticed that the boy did not have a family with him.  The poor child was silently crying in his crib, reaching his arms towards us.  Our hearts broke!  Brooke said, "Mom I am going to pray for him right now!"  I cried back to her room.  This kept bothering her and she made a craft for him.  Then there was another little baby all alone in a crib.  I think he may have had seizures because he would shake all over.  She just did not understand where their mommy's and daddy's were.  We talked about that and we decided to keep praying for these little ones.  Such a hard life lesson for a 5 year old, especially when they are going through pain.

Saturday and Sunday were hard for her with pain.  Poor thing, just taking a step was painful.  And of course, she hates the pain meds so she was just on tylenol and valium.  The first walk was torture as she stood and screamed she could not do it.  I wanted to pick her up and tell her no problem.  But I did not.  I kept telling her she was brave, strong and she could do it.  Slowly, we made it to the playroom.  Each walk was a little less painful. 

The doc came in last night and said all looked good.  So we left the hospital and came to the RMH.  We are here until tomorrow and then headed to my aunts.  She will have more time to heal before we head home.  Thank you for all your prayers.  This has been a tough road, but God is showing us the way!  I posted a few pics of some smiles we caught of Brooke.  I am sorry if I do not respond to emails quickly.  I am having trouble getting internet service.  And I have to keep chasing Chan!

Surgery Day 3

Today I'm posting for Melinda. (Hers shoes are absolutely impossible to fill, so I have edited this post 47 times. I hope I can get this just right for her....)Today's been an especially long rough day for Brooke and Mom too.That's why Melinda asked me to update the blog for her. She knows how much we all want to know what's happening, and how at times like these we're waiting to glean any detail, but it's gotten late and Melinda's headed back to the RMH and to her boys who've missed her all day. Daddy's on night duty with his princess.

Brooke is doing as well as should be expected today. She's on track, but she's hurting none-the-less. Please continue to pray as Brooke works hard to recuperate and Melinda tries to keep up. Brooke's doctor will see her again tomorrow. Continue to keep him in your prayers as well so he can make the very best decisions for Brooke and her recovery.

Thank you for accepting a blog post from a stranger today. Melinda would have done it herself if there was a single ounce of oomph left in her tonight. You know it's true. Your prayers are coveted and appreciated. More tomorrow.  ~Julie

Surgery- Day 2

Day 2 is never a good day. Poor girl had a lot of pain. She had to slowly start the sitting up process. By 1:30 she had sat in a chair and stood for about 10 minutes. This was very painful and poor Brooke kept crying to me that she just could not do it. I kept telling her she could. At one point, she was very upset and told me she was so scared. I asked her why. She did not know why? This is such a tough road for a 5 year old. We did have some good moments- painting nails, painting pictures, watching movies, and snuggling. Brooke had a visit from Aidan. This made her very happy. She just wanted to hold his hand. He wrote her a book telling her how brave she is. She drew him a picture of the 2 of them holding hands! Love this! It was so hard to leave tonight because I knew how much she wanted me and I wanted her. But Daddy is still a good replacement!

She is going to try to walk tomorrow. Hopefully it will go well. Tired and going to spend time with the boys! Thanks for prayers.

Surgery Update

We left this morning at 5:00 and arrived at 5:30 for the 7:30 surgery. It started out rough, but then the nurses provided some “Razzle Dazzle” (as the fondly call it) and Brooke had fun blowing bubbles using a “smoke mask” (as she calls the sleeping medicine mask). I was allowed to go into the OR until she fell asleep. We named gum ball colors as she drifted off. Never gets easier walking out of the operating room and leaving your baby behind. Surgery started right around 7:30 and we were paged at noon.

Tim and I came into the OR waiting area to find Dr. B sitting on the counter and texting. Love this doc!!! He grabs a piece of paper and takes us into a private room. Tim and I glance nervously at each other. He quickly tells us she is fine. But he found some interesting things. He made an incision at the S4 and S5 vertebra. This is where the Dura Sac should be. And this is also where he should find the tether. But instead he found no CSF Flow and a bundle of nerves. He said it was very strange and he had never seen anything like it. He then made an incision at the L4 vertebra and found the Dura Sac. He was so surprised, so he called up his neurosurgeon friend. He also had never heard of anything like this. He then found the tether. It was tight and the nerves coming off were stressed. He was able to detether. He also told us that he did not want scar tissue to grow over the exposed nerves on lower spine, so he inserted gortex(sp). Apparently, scar tissue can not form over gortex. He thanked me for providing him a child that was such an unusual case. :) He also said thankfully he had a sixth sense and did not begin cutting or messing with the nerves at the end of the spine. (We like to think of that sixth sense as God!) We do know now that if and when she needs a lumbar puncture it has to be above the L4 vertebra because there is no CSF Fluid below this.

She is doing well and smiling. What a trooper! They had to draw blood and I stood and watched as 2 nurses poked her in 2 separate places and moved the needle around. Then they had to send for a plebotomist(sp). They got it on the first try. Brooke said, “I am trying to be brave and only say ouch.” Love her! She is also having poor urine output. They think it is ok but watching it. Poor thing then got sick and threw up. She looks up at me, “Mama I am sorry! I did not know it was gonna happen!” She is really trying hard to be brave. I am so proud of her!!! I am here at RMH with the boys and daddy is watching over her. I will go back in a little while. Really need this headache to go away. Had it for 2 days and it is dragging me down. Want to get back and feel my best for her. Thank you for all the prayers!!!

The Promise

Tuesday morning- woke up at 5:30. Hurry to pack last minute items, eat breakfast, and put some thing in ice chest. Load my van, and then wake the kiddos up. Get them dressed and fed, and drop Aidan off at a friends house for the day. (him and Tim are leaving Wednesday) Go to my mom's house. Unload my van into her van. Move car seats and kids. On the road by 8:30, knowing we have to make it by 8PM to Ronald McDonald House. Drive starts out rough and dreary. Rain, and Brooke not feeling well. Then Chandler decides today is not a good day for him to travel. Screaming and crying on and off until we hit Dubois. Quick stop at our usual Eat and Park for lunch. Turns into an hour and 15 minute stop, because their grill was down. We did get free coffee and cookies! Back on road where Brooke manages to fall asleep. Poor Chandler continues to cry off and on. Make it to NJ and make a stop at Walmart after realizing we left the stroller in my van. :( Get back in van with tired children and mommy's. 1 ½ left! And it is 5PM. Just praying we do not hit very much NY traffic.

As we near the city, I get the same familiar feeling in my stomach. The knot! I am not a fan of NYC. In fact, I am not a city girl at all! Please just give me the quiet country, or Canton. :) Each time I get close to NYC, my tummy gets a lump in it. I have this desire to just turn the car around and head home. Of course I never do, I take a deep breath and keep driving. Thankfully, we drive very smoothly through city and out to the Long Island Bridge. As we start to cross the bridge, I call out, “Look at the Rainbow!” There from the gray clouds straight down to the water was a very thick, vibrant rainbow. As I quickly glanced at it, I was reminded of God's Promise. I thought of the crazy day, and remembered life is crazy! But with God bearable. We have to do many things we just do not want to do, but we survive.

As we neared RMH our GPS started giving a different rout than normal. I looked around and was able to figure out where we were. I felt a peace and it felt a little like home. I recognized businesses and a few houses. We made it! And it was 7PM! Then began the chasing a 1 year old while trying to check in, feeding all dinner, unloading the car and loading the fridge and room. Of course, both kids were hyped up and a little crazy! But everyone finally settled in.

I stood last night looking at the board of people staying at RMH. Many of them from all over the US. And a family from Russia, one from the Philippians, and then I saw Haiti. Two families from Haiti staying right next door to us. I thought of how God has a way of connecting us all even when we are hundreds and thousands of miles from our homes. How thankful I am for a place like RMH. A safe home away from home.

A picture in our room shows a little girl sitting in a window seat looking out the window. She is expecting something or someone. She waiting on the unexpected. Waiting on a promise. We are too are looking out the window. We are not sure what to expect or who. We are praying the pretesting goes well. We have role played and talked about the “Smoke Mask”. She keeps saying “I am going to be brave.” I keep telling her she already is!

Wednesday- I am adding today on here because I did not get this posted earlier.  We went to pretesting.  Of course I talked until I was blue in the face about what would happen at the pretesting.  Well of course, even with Miss Michelle there and her favorite Princess Look and Find...I had to hold her down for the blood test and blood pressure.  The nurse after said, "Can we still be friends?"  And Brooke told her "Oh yes."  She never is mean, she is just scared.  Poor thing!  We are resting at RMH and going to make crafts to decorate her room.  

Surgery is at 7:30 AM  and is around a 4 hour surgery.  I am not sure how quick I can post, but will do my best.  We found out she has to lay completely flat on her back for a full 24 hours after surgery!  Should be fun!  We are making butterflies and pictures to hang from the ceiling.  So thankful for all the prayers and support!

On Our Way....

Ok so we leave in the morning.  I am so tired, and I am going to keep this short!  Packed, kids bathed and tucked in bed.  Catchin up on some celebrity apprentice with the hubs.  Thank you all so much for prayers!!!  Will keep this blog updated and post new info soon! 

Charming

Today was one of those days I wanted to find a rock and hide under it.  With Brooke ya never know what you are gonna get.  A happy child playing quietly, a girl bouncing off the walls with energy, or the one that showed up today.  It started out as soon as she woke up.  I tried to give her a hug and say good morning, her response, "Ouch quit squeezing me so hard!"  She went off and played quietly for a little while, but then came back with tears, "Mama I do not feel good."  I set her up on the couch and helped her to get cozy.  Today was a movie watching day. 

We had a wonderful family come over to bring us freezer meals for when we come home.  As soon as they walked in the door, they were greeted by the charming child on the couch. "What are they doing here?"  Ugh!  I can't make excuses, because if you see Brooke on a good day, she is charming and sweet.  Get her on a bad day, well...she is not.  While the family was here, I tried to keep Brooke from saying anything I would regret or she would regret.  Unfortunately, she kept talking.  When the family left, I tried to explain to Brooke how rude she was.  She just covered her ears and buried her head. 

After resting, she managed to feel better in the afternoon and evening.  But I could tell by her eyes that she still did not feel very well.  Plus her attitude was still quite apparent.  Many parents reading this might have all sorts of wonderful discipline techniques to share with me.  But one thing I can say is this only happens when the girl is in pain.  No she is not perfect other times, but at these times a warning from me is plenty.  I rarely ever have to actually punish her, because she does not like to be in trouble.  The difference is, when she hurts, she does not care if you are angry with her.  She just wants it to be quiet and everyone to leave her alone.  She will tolerate me sitting next to her, but if I talk to much, or even breath to loudly, she covers her ears and cries.  How do you discipline a child when they are hurting that much?  I do my best to wait until I can reason with her and then give the life lesson. 

Unfortunately, it appears sometimes as if I have no control over my daughter.  The truth in the matter is I have no control over her pain.  And neither does she.  She is five and she hurts.  She can't figure out why, and I am sure on some level it is annoying her.  She wants to be playing and laughing but she can't.  At times like these, I want to bury my head.  I have found though I need to be strong and let her work through her pain, however ugly it may look.