And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Monday, November 30, 2009

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...

Friday, November 27, 2009

Monday, November 23, 2009

What's worse?

From Connor's Mommy:

Monday, November 23, 2009


joy journal 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

Sunday, November 22, 2009

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"

Saturday, November 21, 2009

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!

Thursday, November 19, 2009

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

Friday, November 6, 2009

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

Wednesday, November 4, 2009

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:

video

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!

Sunday, November 1, 2009

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...