Christmas Note from Connor's Mommy

Friday, December 25, 2009

As Christmas approaches, I'm filled with mixed emotions. My family is joyously celebrating our Savior's birth and gratefully counting our blessings. As my heart sings in response to this wonderful time of celebration, it also aches for the one gift I want most and won't receive this Christmas - my Connor back with us healthy and whole. I feel like the spoiled child who says "If I can't have that, then I don't want anything at all." So, I approach this Christmas with trepidation. I'm not sure how we will get through the next few days, but I'm counting on God to get us through. A couple weeks ago, Connor's Third Grade Class dedicated their Christmas choir performance to Connor. They also recited this poem "My First Christmas in Heaven" during the performance. Tonight, the kids and I talked about how Connor can wish Jesus a "Happy Birthday" in person this year. As we look back on 2009, we remember other family members who will be spending their first Christmas in Heaven, too. We will miss Papa Burt, Grandma Mann, Uncle Al and Aunt Loretta. I'm sure they are all having quite a celebration My First Christmas in Heaven I see the countless Christmas trees around the world below With tiny lights, like Heaven's stars, reflecting on the snow The sight is so spectacular, please wipe away the tear For I am spending Christmas with Jesus Christ this year. I hear the many Christmas songs that people hold so dear But the sounds of music can't compare with the Christmas choir up here. I have no words to tell you, the joy their voices bring, For it is beyond description, to hear the angels sing. I know how much you miss me, I see the pain inside your heart. But I am not so far away, We really aren't apart. So be happy for me, dear ones, You know I hold you dear. And be glad I'm spending Christmas with Jesus Christ this year. I sent you each a special gift, from my heavenly home above. I sent you each a memory of my undying love. After all, love is a gift more precious than pure gold. was always most important the stories Jesus told. Please love and keep each other, my Father said to do. I can't count the blessing or love has for each of you. So have a Merry Christmas and Wipe away that tear Remember, I am spending Christmas with Jesus Christ this year Please pray for us and the other families who have lost loved ones this year, like the Ledbetter and May family. Also, please pray for my cousin, Missy. She has cystic fibrosis and is 35 years old. She's in the hospital and not doing well at all. They are not sure if she will pull through this time. Always believing, Joy Cruse

Exciting News!!

This will be quick and I'm sorry I don't have any pictures to accompany it. However, last night as we were getting ready for bed, I discovered something very exciting!! I can tuck my hair behind my ears!! Yep! It's growing!! Finally!!! Yippee!!!

I know this probably isn't as exciting for all of you as it is for me, but it was pure joy! Even my sweet hubby was excited for me. I thought it was only long enough on one side, but he had me try the other side, too! Sure enough, I can tuck it behind both ears!! So, thanks for sharing in my joy!!! It's the little things these days!!

p.s. I only had one seizure yesterday and B is getting better!!! Praise the Lord!!

Quick note on my hubby & then from Connor's Mommy

May I ask each of you (you unbelievable prayer warriors) to stop for a quick moment and pray for my amazing hubby? This is the man that sacrifices so much on a daily basis to serve me when I'm not feeling well, and even when I am! ; ) He started to get a sore throat on Tuesday. He immediately started pumping his body with Vitamin C. Mom gave him some Tea Tree Oil for his throat and it cleared up quickly! Thank you, Jesus!
However, whatever this is has moved to the rest of his sinuses. He just feels yucky! He is still working so hard at work and at home! He is making every effort to still take care of me (I've had a few rough days) despite how awful he feels! He is such an amazing man! Please pray for his rapid healing and for blessings on him since he continues to take care of me when he is feeling so bad.

I love each of you for giving of your time to come & check up on us and then go to Our Father in prayer!! Bless You!!

Now, here is the note from Connor's Mommy:

Thursday, December 17, 2009

"Jesus wept." John 11:35 Such a short simple verse, yet there is so much meaning hidden in those two words. After Lazarus died, Jesus came to his tomb. Mary (Lazarus' sister) was weeping. "When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled." (v. 33) And in Verse 35, Jesus wept. It seems simple enough, right? What's so significant about that? It's the shortest verse in the Bible, and perhaps the most profound. He wept for their suffering, for Lazarus's pain, for the sorrow and heartache of the moment. He entered their agony and suffering, and experienced it personally. Jesus wept. Imagine that you were reading this blog from your home in a remote country completely at peace and totally secure. Your homeland is immune from the economic turmoil of these times. Its enemies cannot attack its borders. Its residents commit no crimes; its land suffers no disasters. There is no pain and sorrow. Would you leave such a home at peace for a world at war? Knowing you would be rejected by the people you came to help, abandoned by your friends and executed by your enemies? Would you come to this place, where you would experience grief, pain and sorrow along with the rest of us? Honestly, I don't think I would. This is the story of Christmas. Of all the names for the Baby of Bethlehem, my favorite is the one Isaiah gave him seven centuries before his birth: "Immanuel," which means "God with us" (Isaiah 7:14; Matthew 1:22-23). One of the earliest hymns in praise of Jesus says that he, "being in very nature God, did not consider equality with God something to be grasped, but made himself nothing, taking the very nature of a servant, being made in human likeness. And being found in appearance as a man, he humbled himself and became obedient to death-even death on a cross" (Philippians 2:6-8). The next time you feel stressed and frustrated and alone, remember that your Savior walks with you through your darkest days and longest nights. He is with you always, to the very end of the age (Matt. 28:20). You could not come to him, so He came to you. He loves you so much that he considered your life worth His death. The King who chose to be born in a cow stall chooses to live in your heart. This is the "gospel," the "good news" of Christmas. On a day (or year) of bad news, it's the best news of all. Thanks, James Denison, for your sharing this perspective on Christmas. Always believing, Joy Cruse

Anyone Know What Today Is?

Anyone?


Guess again...


YES!! You got it! Now, let's all Praise the Lord!! Today is the 3rd Anniversary of the day that the doc's told us that the most amazing man ever created (next to Jesus, of course) was cancer FREE!! Yes, Lord!! Today is the third anniversary of a day filled with much joy and relief.

December 8th, 2006, was the day we found out that B was cancer FREE!!! We continue to pray for his cancer to stay gone forever!! Please say a prayer praising the Lord for his healing and for continued protection!!

This was the first picture taken once we got the news!!

Here's a post from B's blog earlier in the year that links back to the day we found out he had cancer and his unbelievable response!

Here is a link to the original post three years ago today, proclaiming God's miraculous powers and B being cancer FREE!!

Whatever you are doing right now (I know, you're reading this, but anything else that is keeping you busy or otherwise focused), stop doing it, and just think about how amazing our Lord is....then, Praise HIM with me that HE is a God that heals and Praise HIM that He healed my most wonderful hubby!!!!

Thank you, Lord!!!!

B, I Love You with all of my heart and look forward to every single day of forever with you!!!! A thousand generations.....

Update

To all of you....Thank you for your faithful prayers and encouraging notes! We spent the majority of Thursday trying to connect with the many physicians that have been connected in this process. It was finally the afternoon of Thursday that we were able to get M into one of the docs to get her blood-work done. Still no answers, but no more lengthy seizures...

Thursday evening, M was in pain with her stomach burning and a very tight back. The night was very restless and early in the morning M was in extreme pain in her low back and stomach, bad enough that we put in a call to her doc to be seen ASAP.

After a brief description to the doc, it was determined to start fluids and keep an eye on M. Praise the Lord....the fluids worked. Blood-work determined that M was severely dehydrated and was very ketotic. What this meant is that while the diet has been effective in keeping M in ketosis (to treat the seizures) her ketone levels were too high and was most likely causing the issues we were seeing. While not definitively diagnosed, it is also thought that the low back pain is due to kidney stones.

By early Friday afternoon, she was better and has to focus on drinking plenty of fluids to flush out any kidney stones. While still not at a 100%, M is doing okay, but still feeling a little off. Hopefully, we can get a handle on things today as we put up Christmas decorations and can get M some much needed rest as she has had several restless nights and days!

We still do not know exactly why she had the lengthy seizure, but are glad that we have not experienced it again. Thank you for your prayers!

20 minutes

Precious, Precious Prayer Warriors: Red Alert....Please pray for M as we experienced something we have not yet experienced through this entire ordeal. Tonight at 6:10, M had a seizure (number 3 for the day) that lasted 20 plus minutes. This was and is continuing to be a very shocking and scary moment. we are now 3 hours past but M is still continuing to feel like she is in a constant state of having a seizure. So, please pray with us that she would be healed and set free from these seizures. Pray for our wisdom as to whether or not we go to the hospital, pray for the docs that we may come in contact with.

I will try to update more later....

Thank YOU!!!

More Prayers for My Cousin

Remember at the beginning of the month when I posted about my cousin's health?

Well, she is back in the hospital. Here is the update from my aunt (her husband's Mom):

Update on S- she is back in the hospital with an infection at her port site. She is running 101 fever and the doctor has decided to take the port out for two days, give her mega doses of antibiotic, and then put a temporary one back in. They are talking about putting a fistula in her arm, which is made by joining an artery to a vein which would increase the blood flow and will be easier to insert the large needles for her dialysis treatments, or make a graft in her arm which is man made (a tube will be inserted to connect an artery to a vein for the dialysis). The fistula could take up to 6 months to mature enough to be used for dialysis, but the graft will only take about a month to heal and be ready.

They are doing blood cultures every few hours, and also lung x-rays or scans to make sure her lungs have not been compromised by the disease. All of this is, of course, to monitor the progression of the disease.

Praise report! Her husband, S, found a local job and is home every evening to prepare dinner for her and the kids. We are praising God for that answered prayer. Her disability is in affect and she has already received her first check and will get one the 3rd of every month from now on.

This is where she stands right now. Dr. says she will be there at least a week. Her spirits are pretty good though and she says she is very grateful to be doing as well as she is and always tells me to thank everyone for their prayers.

So, keep it up prayer warriors! You are making a difference since my cousin (her hubby) was able to find a job close to home! Now, let's pray for healing and wisdom for the docs in the next steps they take...

A Judeo-Christian Nation

Click on this link:

A Judeo-Christian Nation

What's worse?

From Connor's Mommy:

Monday, November 23, 2009

Before Connor passed and even after, I felt like there could be nothing worse than losing a child. I've had many people tell me they feel the same way, and I have to admit that I can't imagine worse grief than this. It is heart-wrenching and we cannot get through this without God's Grace. That being said, I have changed my mind. I believe there is something worse... spending a life/eternity without knowing God. I can't imagine facing the trials of this world without the peace, strength and comfort only He can provide. What would life be like without His promise for a hope and future? Jeremiah 29:11 Like anyone who suffers loss, I would love to reverse my situation and bring my Connor back. In fact, Carson and Mason were just talking about that in the car last week. Mason said we should just buy Connor back. How I wish it were that simple. We even talked about what we would do if we had Connor back for a day. That was fun daydreaming. But, we are deceived by our longings for what we once had, because we cannot have it that way forever, even if we regain what we lost for just a little while. I have come to realize that the greatest enemy we face is death itself, which claims everyone and everything. No miracle can ultimately save us from it. A miracle is therefore only a temporary solution. We really need more than a miracle - we need a resurrection to make life eternally new. We long for a life in which death is finally and ultimately defeated. Thank you, God, that death does not have the final word; life does. Jesus' death and resurrection made it possible. He now has the authority to give life to those who want and need it. In the New Testament, there are countless stories of Jesus performing miracles; healing many people. But, eventually, all those people still faced death. In other words, Jesus' miracles were not the ultimate reason for His coming. His great victory was not His miracles, but His resurrection. Jesus guarantees that the last chapter of the human story is not death, but life. All tears and pain and sorrow will be swallowed up in everlasting life and pure, inextinguishable joy. This Thanksgiving, I'm thankful for that beautiful gift. Even though I feel the pain of my present circumstances, which reminds me of what I have lost; yet I can still hope for future victory and a future spent with Him (and Connor). "Overwhelming victory is ours through Christ who loved us enough to die for us. For I am convinced that nothing can ever separate us from His love." Romans 8:37-38 Here are the words from Chris Tomlin's "I will rise", which was sung at Connor's service. There's a peace I've come to know Though my heart and flesh may fail There's an anchor for my soul I can say "It is well" There's a day that's drawing near When this darkness breaks to light And the shadows disappear And my faith shall be my eyes Jesus has overcome And the grave is overwhelmed The victory is won He is risen from the dead [Chorus:] And I will rise when He calls my name No more sorrow, no more pain I will rise on eagles' wings Before my God fall on my knees And rise I will rise And I hear the voice of many angels sing, "Worthy is the Lamb" And I hear the cry of every longing heart, "Worthy is the Lamb" Always believing, Joy

From Nate's Mommy

"I thought I would send a quick update on Nate, since many have asked how he is doing. The answer is great. He is continuing to get stronger everyday. He still uses his walker, but is starting to take steps. He feels great most days. We are all enjoying less trips to Children's. We are excited that Nate's wish was granted and we will be going to Disney World next month thanks to Make A Wish. We are thanking God that this December will be much better than last year as Nate was diagnosed last year on Dec. 20 and well, you all know the rest of the story. We are prayinig for continued healing and trying to learn about what life might look like for Nate as he grows. We wish you all a Happy Thanksgiving! Your prayers and love have carried us over the past year. We are so very thankful to you all.

PLEASE remember the kids who are still fighting cancer and pray for their families anytime you can. We know of two little boys who are fighting tough battles right now with brain tumors. Please pray for Matt and Ryan. Love you all!!!The Oxford Family"

November is Epilepsy Awareness Month

November is Epilepsy Awareness Month

The challenge is to "Talk About It!" According to the Epilepsy Foundation, epilepsy is often suffered in silence. Before I was diagnosed, I would not have understood that. However, so many people have come out of the woodwork to talk about how they or a loved one also have epilepsy. So, wear your purple (the color for epilepsy awareness)! In the meantime, let's "talk about it!"

Here are some epilepsy tidbits that are shocking to learn:

* Epilepsy is defined as repeated seizures, which happen at any point in a person’s lifetime due to an inherited condition, an illness or a brain injury of any kind, or (as in my case) for no known reason--it is not contagious.

* Each year, some 50,000 Americans die from seizures and related causes, triggering more deaths annually than breast cancer.

* Three million Americans suffer from epilepsy--it is the third most common neurological disorder in the US after Alzheimer's (dementia) and stroke.

* While approaching an incidence of 2 percent of the population in general, the incidence of epilepsy in infants and kids is somewhere between 5 to 7 percent.

* More people have epilepsy than cerebral palsy, multiple sclerosis and Parkinson's disease combined.

* Epilepsy gets much less funding than stroke or dementia, and even less funding than Parkinson’s disease, which affects less than a quarter of the number of people who are affected with epilepsy.

* The high rate of head injuries in soldiers who have served in Iraq portends a wave of epilepsy equal to or worse than the one which occurred as a result of the Vietnam war.

Let's Say Thanks!!!

XEROX IS DOING SOMETHING VERY SPECIAL! You CAN, too!!

If you go to the web site, www.LetsSayThanks.com you can pick out a thank you card and Xerox will print it and it will be sent to a soldier that is currently serving in Iraq . You can't pick out who gets it, but it will go to a member of the armed services.

It is FREE and it only takes a second.

Wouldn't it be wonderful if the soldiers received a bunch of these?

Please take the time to do this yourself and to pass it on for others to do. We can never say thank you enough!!!

Thanks for taking to time to support our military!

From Connor's Mommy

What an encouraging word from Connor's Mommy:

Wednesday, November 18, 2009

I've learned that it's less important to pray for how we want the journey to end than it is to pray that we would "journey well." A friend of mine who is battling cancer said, "You can pray for healing for me if you feel led to, but my prayer for myself is that wherever God directs my journey, that I would journey well". To me, that says it all. If we are praying this way, then we are truly lined up with God's will.

I know that when we are faced with a scary prognosis, an unsure future or huge burden, we often times pray for God to remove the trial from our lives. We want him to fix the situation; remove the thorn from our side. How many times did I pray that for Connor? Instead of praying this way, maybe we should pray for God's grace to carry us through whatever lies ahead and that God would redeem the situation.

I know this is easier said than done. I was the first one down on my knees praying for Connor's healing. I don't think that God wants us to quit asking for the desires of our hearts, but He does want us to surrender to "His will be done."

So, as for me, when I pray for myself or others facing trials, I pray that we would journey well. God, carry me through this dark valley in such a way that would glorify you and redeem this situation.

"Out of much tribulation I bring forth a people for the GLORY of My Name. I am shaping you in the furnace of affliction that I may set My seal upon you and display in you My own identity. I desire that you be one with Me in all I have purposed, and as I move in the earth today to REDEEM the lost and deliver the captives, you are moving with Me whenever your soul and spirit are yielded to Me as an open channel of prayer in the Spirit." Frances J. Roberts

"Run in such a way as to get the prize. Everyone who competes in the games goes into strict training. They do it to get a crown that will not last; but we do it to get a crown that will last forever."
I Corinthians 9: 24, 25

Always Believing,
Joy

From Connor's Mommy

Last week I mentioned how my heart had been stretched to learn new lessons. This week, I want to mention something else I've learned.

I've learned to surrender what is most important to me.

As most of you know the week leading up to Connor's home-going was very stressful. His feeding tube had fallen out on July 4 and he was not getting any nutrients and he was severely dehydrated due to the fluids/food just flushing right through him into his colostomy bag. That whole week, we spent everyday at a hospital trying to fix the feeding tube, to no avail. On Thursday, July 9th, another feeding tube was placed in Connor's abdomen. (They did this without putting him to sleep and he handled it SO WELL). When we arrived home, we realized the new tube was leaking and this tube did not fix the problem.

Shortly after we realized this, I got a phone call from the doctor in regards to Connor's labwork. His red blood count and platelets were low again and he would have to go back to the hospital Friday for more blood and platelets. The doctor also informed me that his BUN level was extremely high, which meant Connor was dangerously dehydrated. If he started hallucinating or became non responsive, we should bring him into the ER as soon as possible.

At this point, I was so worn out. It didn't matter how hard I tried to fix these problems, to fix Connor, if God didn't choose to HEAL Connor, it was all in vain. I could only do so much. It was like running on a treadmill. I was spending all this energy and all this time, but I wasn't making any progress for Connor.

Outside on our patio, Mom, Tait and I prayed. We prayed that God would either heal Connor or take him home. We knew that we were not selfish enough to want to keep Connor here the way he was. If His ultimate plan was not to heal Connor, then we wanted God to relieve him from his suffering. We surrendered our precious Connor into God's Hands. We prayed for a sign. A couple of hours later, Connor became non-responsive and we called the ambulance, which led us to Children's at Legacy and Connor's last 24 hours..

It is so hard to relinquish what we love SO MUCH to God, back to our Father and Creator. We want to hold on with all we have to what we hold dear. It was so hard to let him go, yet we knew in our hearts it was right.

Just as my daughter, MacKenzie, (in her wisdom) read to Connor on his last day, we should surrender ourselves to his will. This is the verse MacKenzie read to Connor. When Jesus was in the Garden of Gethsemane waiting for the soldiers to come take him, he said to his Father in Heaven, "My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will." Matthew 26: 39

Always Believing,
Joy

Anniversary!!!

Guess what today is?

It's the one year anniversary of the official head shaving party!!!

Here is the BEFORE picture on the way to the hospital:

Here is the AFTER picture, once everyone had their shot at cutting the ponytails off and B shaved it:

If you're so inclined, here is the video of B shaving it:

Here it is NOW:

Also, here are some links to B's posts last year around the haircutting party and surgery:

Long Day

Surgery

Buzzfest

NeuroTrauma ICU

Rest

Thank you all for being such amazing prayer warriors. I had over 2000 seizures last year. This year, I'm at about 850. So, there has been improvement. However, I am still having them. I had 150 in October, which is the most I've had since prior to being diagnosed. We don't really understand it, but we're relying on the Lord for HIS perfect healing!

My cousin

Please be in prayer for my cousin, S! I am late in posting all of this, as it occurred in September, but please begin fervently praying for them.

Here is the info, as provided by my aunt two weeks ago:

She began to have trouble with what she thought was a kidney infection or a UTI. The doctor she went to gave her some antibiotic and ordered a Cat Scan as she was urinating some blood. The Cat Scan came back that she had a cyst on her kidney, cysts on one of her ovaries and 10 kidney stones. Doctor referred her to a urologist. However, she did not go to one and she took the antibiotic, but steadily got worse. Their health insurance wasn't in place, so she was holding out for their health insurance to come into affect on October 1, but she was a week shy of that when she drove herself to the ER because she was weak as a kitten from losing so much blood. She was transferred to Scott & White where she was eventually diagnosed with Goodpasture's Disease. Doctor said the Goodpasture's Disease could have started from a virus or an infection or from inhaling hydracarbons that are found in pesticides, etc.

She is doing pretty good at home. I called this afternoon to check on them and her oldest son answered the phone. I asked him if he was helping take care of mom and he said "we all are nanny". She was resting (which S, her husband, says she does a lot of as she is so very weak from being in the hospital for a month). He says she naps a lot. She is on a very strict diet and is taking the chemotherapy pill (3 each day) mega doses of Prednizone, Iron, Insulin (evidently this disease has created a problem with her blood sugar) and I don't know what else.

She had her first outpatient dialysis yesterday and He said that went okay. He says that she is feeling pretty good. She has a long road ahead of her as the doctor said it could take 6 months to two years to heal this disease. She can't even get on a list for a kidney until she is in remission.

As well, they have three young kiddos and my cousin has had to quit his job because he was on the road all the time. So, he's had to find a new job. Please lift them up...

From Connor's Mommy

I once read that when you experience loss, your heart expands to handle the grief. When that happens, your heart is then larger to grow more, love more and experience more. I guess it seems to be in a raw state and it's alive and open to every sensory experience. It's similar to what happens to our muscles when we lift weights. The muscle tears a little at first, and then it enlarges. Tait and I can relate to this. I definitely feel like my heart has expanded to handle this grief. It is feeling everything more deeply. I feel sadness more and joy more. Excitement and depression are both experienced to a higher degree. My heart is open and ready for growth now. It is craving understanding, wisdom and assurance. I guess because of this, I feel as though I've grown a lot in the last few months.

My heart has learned many things.

I've learned that although God's grace is what spares us from disaster or loss, His Grace is poured out on us even more when we are not spared from the disaster or loss. I've seen several children spared from Connor's fate and yes, God's Grace spared them. But, I can tell you that if He has allowed you to go through the loss, He will sufficiently provide the Grace to go through it. How much more important is His Grace then.

I love this quote below from Dr. Alan Redpath.

"There is nothing-absolutely no circumstance, no trouble, no testing that can ever touch me until, first of all, it has gone past God and past Christ right through to me. If it has come that far, it has come with a great purpose which I may not understand at the moment. But as I refuse to become panicky, as I lift up my eyes to Him, and I accept it as coming from the throne of God for some great purpose of blessing to my own heart, no sorrow will ever disturb me, no trial will ever disarm me, no circumstance will cause me to fret, and I shall rest in the joy of what my Lord is. That is the rest of victory."

As his hand is on my life, I'm counting on God to bring me through even this to victory. I'm believing his Grace will revive me again.

"You, who have shown me great and severe troubles, shall revive me again, and bring me up again from the depths of the earth. You shall increase my greatness, and comfort me on every side." Psalm 71:20, 21

Please continue to pray for Carson Richardson, as they try to figure out what treatment to try for Carson next. They are looking for a miracle. Also, please pray for our Carson. He broke his arm yesterday at Mason's 4th birthday party! Happy Birthday Mason!

Always believing,
Joy Cruse

Begging for More Prayers

Thank you all for being such precious prayer warriors! We are coming to you again to beg for a little more prayer. As B stated the other day, I actually had a great run of eleven days with only four seizures. Praise the LORD!!! However, in the last nine days, I have had 66 seizures. I'm exhausted.

We are praying for miraculous healing, first. Then, for wisdom in how to move forward. Yesterday, I had eighteen seizures and today I've already had seven and it's only 11am. No more, please , Lord! The epilepsy diet they have me on out of Johns Hopkins has worked very well and I've been able to titrate down on my meds due to the great response to the diet. However, this last week has been yucky.

As if I've not said it enough, I'm so ready for healing! I want this over. At the same time, I want God to be glorified! He deserves to be the Hero of this story! So, how do we get there. Please pray for miraculous healing and for wisdom for us in the decisions we have to make...

Again, I can't begin to tell you how much I appreciate all of your prayers!

Waiting and Prayer

We are coming to you late in the day to ask for more prayer from all our faithful prayer warriors. M has had a really tough week. Tough in that for the week, she has accounted for nearly a third of the total number of seizures she has experienced in this month of October. Today, has particularly seemed rougher than usual as she has had nearly 10 seizures so far (avg about 1 every 2 hours if not sooner).

Anyway, we are asking for your prayers. When will this be over? When will these seizures go away? Today's sermon from Matt was on Waiting. Wow...What a hard thing to often do. But the main point was Waiting and being in God's will. The lesson came from 2 Samuel after Saul had been killed. It was now time for David to take his place on the throne over Jerusalem. But before David proceeded he inquired of the Lord first. "Shall I go up?" asks David. The Lord replies "Yes!" Next, David asks to where, and the Lord tells him exactly where. You see, David had plenty of times from the moment he was anointed king by Samuel to take his throne, and yet he waited until the Lord told him it was his time.

M has been waiting. She has been more than amazing at enduring. And yet with days and weeks like we have just experienced, the waiting gets somewhat tough. So please lift M up right now. Pray for her strength and endurance. Pray for our wisdom as we continue to work through each day on the diet and medication.

God Still Performs Miracles

Wow!! Praise Jesus!!! I can barely see through the tears of joy to type this....WOW!!!!!!!

This is the e-mail I just received from Nate's Dad:

Praise God, Nate's MRI is clear and he is in remission. This is truly an awesome thing that God has done. Nate has been through so much, but keeps bouncing back thanks to our LORD. He will get MRIs every three months for the next two years. His cancer is aggressive and could pop back up at any time in the next five years, so continued prayers are critical. We are so very thankful for all of your prayers, and want everyone to know that we serve a very big God. God can take even the smallest percent of survival and perform a miracle. It has been a long road and will continue to be, but today we are victorious. Please continue to pray for the cancer to stay away and for him to recover physically with his walking, talkingan and cognitive skills. May God bless you all.

From Nate's Dad

Please pray for Nate today. He is having his MRI this morning (Monday), and we should hear the results by Tuesday afternoon. We are praying that everything is normal and no cancer is in little Nate's body, a complete eradication of the cancer. This has been a very up and down road, but God has been here all along. We know HE hears our cries and that HE is good. Please LORD help Nate today, hear our cries for YOUR healing upon him. Amen.

From Connor's Daddy

an update from Tait: It was Connors birthday on Oct 2nd -he would have been 9 years old. Now that it has been three months since his passing, my family and I are now just waking up. I don't update much, with Joy's wonderful thoughts in words. But wanted to write and share with you the peace we have in the midst of this "sucker punch" we took on July 10 2009. The only way I can describe this journey is: "Holes and Shadows". Holes where the dreams of a Son growing up in our family are gone.... Shadows where he WAS and where he graced us for eight and a half wonderful years.... The peace from God has surpassed all understanding and we as a family are experiencing it daily. Dont get me wrong -this is the hardest thing we have and probably ever will go through. But, we know that our Lord is here and walking with us in this valley. And, we thank you for walking with us....... 2 Samuel 7 18 Then King David went in and sat before the LORD, and he said: "Who am I, O Sovereign LORD, and what is my family, that you have brought me this far? ..."

Update from Connor's Mommy

"Did I arrange the light of your first day?
Did I create the rhythm your heart makes?
Could you believe when your candle starts to fade?
I want to be the One that you believe
Could take it all away, take your heart away

Was I there for the worst of all your pain?
And was I there when your blue skies ran away?
Was I there when the rains were flooding you off your feet?
Those were My tears falling down for you, falling down for you

I'm the One that you've been looking for
I'm the One that you've been waiting for
I've had My eyes on you ever since you were born
I will love you after the rain falls down
I will love you after the sun goes out
I'll have My eyes on you after the world is no more"

I was listening to this song when I was running last Friday on Connor's birthday. I couldn't help but think of Connor. The words of this song "After the World" by Disciple just rang so true for me. God arranged for the light of Connor's first day. He created the rhythm that his heart made. He was there for Connor when the sun set on Connor's little life on earth and He'll be there for him when this world is no more.

I know that for all of us, God has a purpose. For some of us, we will have to live a long life to fulfill that purpose. For others, like Connor, our purpose doesn't require a long life.

In Sunday School, our teacher was talking about Jesus' purpose on earth. His ministry started at the age of 30 and he had about 3 1/2 years until his death on the cross and resurrection to complete his purpose on earth. He had to pack a whole life of ministry into 3 1/2 years. I never really thought about how much He accomplished in such a SHORT time.

Our teacher also mentioned how John the Baptist was always preparing the way for the Messiah in his messages to the crowds that followed his teachings. At one point, he introduced Jesus to the crowd of people and baptized Him. God spoke to the crowd at this time, announcing that Jesus was his son. Shortly after, John was imprisoned and executed. He had fulfilled his purpose of leading the way for Jesus.

When I think of Connor, I know that God fashioned him in my womb 9 years ago and He had a plan for him before time began. God had a plan and a purpose for Connor and he carried out his purpose in such an outstanding way. I can just imagine God saying to him, "You got your job done, so you get to come HOME early."

I ask myself today "How well am I carrying out His purpose in my life?" Will I have just a few short years to carry out my purpose or will I have a long life to pursue this? Either way, I want to do my job well, just like Connor.

Always believing,
Joy Cruse

Nate Update!!

Yippee! Great news on Nate!

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Update on Nate - 10/08/2009 - From Jackie (his Mom)

""Nate is having a great week. He has just gradually made improvements since his last visit with the doctor. We are thankful that he hasn't gotten the flu since Wes and Jake just got over a case of the flu. I disinfected all weekend and Nate, Luke and I lived downstairs away from Daddy and Jake. Anyway, we are thankful for his strength and joy right now and ask that you pray with us as we are about a week away from an MRI on October 19. We love you all!!!!""

HIS Glory!

...this is still what we are seeking! Obviously, I would prefer that it come sooner, rather than later.

As you might remember, last week, I had only three seizures in eight days!!! Praise Jesus! The energy I had was amazing and it felt great. In the last eight days, I have had 42. I'm only ten shy of how many I had the entire month of September and it's only October the 5th. Yes, I'm tired. It wears me out...However, I keep holding to the Word of the Lord, that this is for HIS glory.

I think back to John 9:32-33, that no one had ever been healed of blindness until Jesus healed that man. Glory be to Jesus!!! According to the docs, there is no other person in the world that has the same kind of epilepsy as me. Lovely, right? All of the surgeries they wanted to do, they can't because my seizures are so deep in my brain. None of the medications are working to make me seizure free. Even on the highest doses of meds, I averaged up to six per day. That is better than the 25 per day before meds. However, it's still a lot.

The Ketogenic diet is helping as I've been able to reduce my meds dramatically (a major goal of the diet as it works to actually heal the brain; therefore, decreasing the need for meds), but I am still having seizures. Last month was the best ever, I averaged 1.75 per day!!! The doctors have literally said they don't know what to do in this situation. They are just hoping to stumble upon the right answer.

However, my hope is in the LORD! He created me in my mother's womb and knew this would start in my life in March 2006. He also knows the day of completion!! Please, LORD, may it be soon!

I just beg of each of you, to believe with me, with us, that this is for HIS glory and that HIS glory will be revealed and revealed soon. Also, that it will be revealed through miraculous healing!!! May it be, LORD!!!

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The Marketing Major in me, can't post without a picture:

Matthew 18:20-Where two or more are gathered in my name, I am there with them!!

From Connor's Mommy

Wednesday, September 30, 2009

This week has proven to be challenging for the Cruse family. Friday is Connor's birthday. More than usual, thoughts of Connor run through my mind. I can't seem to shake an overall sadness. It seems to cling to me and I can't release it. I want to celebrate the gift that Connor was and is to our family, but with the celebration comes a sense of loss. It's a reminder that I cannot hold him this year for his birthday. No happy dance and no bright smile for me to see. We cannot celebrate his physical life on earth this year, but we try to focus on the gift of his Eternal Life with Christ. As I think of Connor's birthday, I can't help but think of the other children who will be celebrating birthdays this fall. Many of his closest friends had birthdays in the fall season and I know that their minds fall to Connor, too, as they enjoy their own birthdays. Many of them have denied themselves birthday presents so that their friends would donate money to TeamConnor or donate toys for Children's Medical Center, instead. Or, they have invited our whole family to their birthday party, so we will still be a part of their celebration. It's the closest thing to having him there at their party. It may be bittersweet for them this year. I guess for this journal entry, I have a prayer request. Please lift up a prayer for these children who have known and loved Connor. I know many of them still struggle with their grief. They also wrestle with their faith and lack of understanding of "why" this happened. They prayed so fervently for Connor, and it is such a hard lesson for all of us when God doesn't answer our prayers the way we expect Him to. Here's a poem that Connor's friend, Mollie Claire, wrote for him and she read it to him at the burial. She mentions the many birthday parties that they shared over the years, as she was born one day after him. "My sweet friend had lots of glory. Listen now while I tell you his story. Connor was born three weeks early as healthy as can be... The very next day, three weeks early I came, his oldest friend, that's me. As babies we pushed each other in cars, played in the sand, even a bath or two. We sat up, we crawled and learned to walk...each stage together we grew. Our first birthday, our high chairs were full of cake and messes... As toddlers, our sisters put us in matching dresses. Our birthday parties together were always a huge affair. We had pony rides, bowling, bounce houses and boot camp, we just had to share. Rides at Disney World, skiing in Whistler, and climbing Diamond Head with no stop. Stuffing sand in his shorts, riding paddle boats and calling my dad a "muffin top". We accepted Christ just weeks apart and took the New Christians class together. With Sayers in our trio, we followed in baptism one after another. Jesus was first in Connor's life. He slept to his favorite praise songs. Although his body was weak, he continued to fight and always stayed strong. My last date with Connor was breakfast at IHOP. We were planning our 9th birthday... a drive in movie and sock hop. Connor taught me to keep on going, without complaining. There is always so much to say. As I last whispered in his ear..."I love you Connor and it will always be our birthday!!!" HAPPY BIRTHDAY, SWEET CONNOR! HOPE YOU'RE HAVING A GREAT BIG BIRTHDAY PARTY WITH JESUS! I BET THE BIRTHDAY CAKE IS GREAT UP THERE! Always believing, Joy

Why?

I'll start this post by asking you to please say a prayer. First, Praise the Lord that He is so good. Then, our next prayer is for miraculous healing! We believe it can happen and we're ready.

This week was wonderful. I only had three seizures in eight days!!! I wish I could explain the energy that comes from not having seizures (not to mention the overall relief). I believe I've mentioned it before, but they found through EKG that each seizure puts the strain on my heart equivalent to that of running a marathon (now if only I had a marathon runner's body)!

Then, today happened...it is 11pm and I've already had six seizures today. I just don't get it. So, again, let's be praying for the miracle!!!

I've had the Lord reveal some amazing things to me this week and I hope you'll enjoy the lessons, too.

Anytime, I have read in the Bible about epilepsy or seizures, the reference is to someone being demon possessed:

While he was still approaching, the demon slammed him to the ground and threw him into a convulsion. But Jesus rebuked the unclean spirit, and healed the boy and gave him back to his father.
Luke 9:42

I have struggled with this as I know that I have the Holy Spirit in me. Therefore, there is no room for Satan or his demons. Yet, I could not figure out why in the world we have been walking this road for 3.5 years.

Through this journey, I was introduced (by e-mail) to a friend in California that had epilepsy most of her life. She was able to have surgery and is doing very well now. Praise the LORD!!! She has been a precious friend through all of this through encouraging cards, e-mails, etc. She came to Texas last week and we got to meet for the first time. Before they left, I pulled her aside and told her the one thing that bothers me most...that when epilepsy is mentioned in the Bible, the reference is to evil spirits. She agreed that she had similarly struggled. The prayer was for the Lord to reveal the purpose behind all of this.

I woke up the next morning and got in the Word! The title was Displaying God's Glory and this was the scripture:

“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life” (John 9:3, NIV).

Basically, Jesus’ disciples assumed it was the result of sin. Jesus quickly corrected their misunderstanding with the statement above from John 9:3. God’s intention to display his glory in this man was planned before the man was born.

No one had ever heard of a person who was born blind being given sight. So, when Jesus healed him, it would be clear that the miracle was something only God could do. The Pharisees questioned the miracle. The man himself was transformed. His life became a megaphone proclaiming what God can do.

God has a purpose for each one of us. Your whole life has been planned and prepared to be a series of opportunities for God’s work to be displayed.

Short comings and handicaps are all suitable circumstances for God’s power to be revealed in your life. Musical talents, academic ability, technical aptitude, creative potential when used for God are also ways God exhibits his glory through your life.

It's worth it to read the rest of John 9.

So, this was a precious encouragement to me on Wednesday morning that God does have a plan in all of this and it is for HIM to be glorified!! Thursday, I went to Bible Study and shared how precious it was this week to learn this about the Lord (and epilepsy). Then, we watch the video for this week's lesson. Would you believe that she taught on John 9 & 10? Wow! So, more reinforcement from the Lord!

It was also a great week since the seizures were at an all time low. Then, I opened up my Quiet Time for today and the title was, "My Struggles are About Him."

What about your struggles? Is there any chance, any possibility, that you have been selected to struggle for God’s glory? Have you “been granted for Christ’s sake, not only to believe in Him, but also to suffer for His sake” (Philippians 1:29)?

Here is a clue. Do your prayers seem to be unanswered? What you request and what you receive aren’t matching up? Don’t think God is not listening. Indeed he is. He may have higher plans.

So, it sure seems as if the Lord is trying to make a point to me over the last few days.

Will you continue to pray with us that the Lord is made known through this and that HE is glorified?!!!

Update from Nate's Daddy...

"Nate has had a strange few days. He has been more playful and seems to have more energy. There just have been some things that still are not right. He goes back to Children's on Tuesday and I am sure they will run tests on him as a result of some symptoms. He has a bowel movement with suppositories, but not really any other time. He throws up occasionally and complains of headaches (both signs of tumor), but then ten minutes later wants to eat and is laughing and playing. His walking is horrible, but he crawls great and is climbing on everything. This could all be swelling from the radiation that will go away, complications from all of his procedures that may or may not go away, or it could be the cancer spreading again. It is frustrating, because some things tell you he is fine and everything is running its course, but then there is always that fear wondering why did that just happen or there has to be a reason for this not happening and you can't help but to think the worst. In many ways we don't want to know any more, we have been told that what has been done for him already is all that can be done and we just want to believe that it is all up to our precious LORD what happens from here. I know that God is good and HE has a plan for how HE wants to use us all. I believe that Nate will make it through this and will grow up to do even greater things for HIS kingdom. All of that said, I still have fears and I still struggle to understand why and how through all of this. At the end of the day, he is still my little three year old boy who I love beyond words, my heart aches, please continue to pray for him, he needs it now more than ever. May God bless you all -- Wes"

Prayers for Nate

Update from Nate's family:

"We are sorry we haven't sent an update sooner we have had several phone calls and realized we haven't sent an update since the latest prayer request. Nate did need a blood transfusion last week and we thought he was going to need another since his energy level did not increase. Wes took him to see the doctor on Friday and it was determined he did not need another transfusion, but is probably suffering from the side effects of brain radiation. His brain is swelling right now which is causing many issues. He is back on steroids in order to bring the swelling down. He is sleeping most of the time, and still having bowel issues. He is struggling to walk again and doesn't have enough energy to play. The doctors think this is what is to be expected for at least a few weeks. It is difficult to see Nate struggling so much again when he seemed to be feeling great for several weeks. Please continue to pray for him and all who love him and support us everyday. Wow, what we do without our family and friends? We love you all!"

B's Annual Meeting

Well, this post is super late. We went to Milwaukee in July for B's Annual Meeting. It is quite the family event. This was my second time to go with him.

These are the puppies we met in the airport on the way out of town.

His company has an event at the Milwaukee Zoo the first night.

The pic is so small, but you can see we rode a camel!

B loves trains!

They had a little steam engine that took you on a little tour around the zoo!

Us, riding the train!

In the gift shop. He says it looks like I have kitty ears.

Yep! That's my baby. Not only is he a fox, but he's also a shark!!

Then, they had a concert! I'll tell you who was in concert soon!!

Here we are inside...getting ready for the big show!

Though he was just the opening act, he was the reason we were there....

Danny Gokey!!!!!

His family works for Northwestern Mutual.

Northwestern made a donation to the foundation he created in his wife's memory!

The next day, we went to the art museum.

Then, we saw a pirate ship!!!

Milwaukee has a free trolley service that takes you to different locations throughout town!

My baby, gettin' on the Trolley!

The sunset, from the plane, as we arrived back at DFW!!

That's it!
I figured I would spare you a bunch of "talking" on my part and let the pics do the talking!
We had a wonderful time and it's so special that he works for such an amazing company.