Is there any doubt that Carter-man has arrived?

As the hours waned leading up to today, I found myself weaker and more in touch with the reality of Carter's passing, as I'm sure we all did. I have admired from afar Skip and Courtney's fortitude as they so valiantly made thier way through these first few chapters of this story. The last 10 months (especially the last few days) have given me such respect and reverence for the Harris Crew. I'm elated that Rebecca has brought me to this community, this family.

When Madison told me that it was going to snow 15 inches this weekend, I didn't believe her. Not that I didn't believe HER, I just have very little faith in the meteorology profession that told her such news. Not to mention that snow, something that has always brought me such joy, just didn't seem to fit this weekend. Well, as the day wore on and our tears so easily turned to laughter, the snow became more realistic to me. I cannot fathom a more appropriate end to today.

When we all wake up tomorrow (especially you, Courtney and Skip), Carter will have purified the world around us. It will be white, clean, beautiful. Dents in cars will be hidden, dog poop will go unseen. The world will look new, inviting, fun. Courtney asked Carter for signs that he was OK once he arrived and I love that he's delivered.

For the next day or two, assuming these meteorologist jokers know what they're doing, the snow will turn on fireplaces, it will produce hot cocoa, it will encourage snuggling and hugs. It will provide children and families with joy and memories. All because Carter has arrived.

For the rest of my life, snow will always be associated with Carter. Snow. One of my favorite things the world has to offer. I love that I will always find Carter in snow.

I was so honored today to stand up as a pall bearer. I am honored to have known Carter. I am honored that my daughters were able to have Carter as a friend. And I'm honored that my friendship with the Harris family is young and will last a lifetime.

I found this poem by Robert Frost and thought it was a strong summary of our day with C-Man. Everyone sleep well tonight. Enjoy the snow tomorrow. I'll be making a snow angel for my buddy.


Kyle B.



DUST OF SNOW by Robert Frost

The way a crow
Shook down on me
The dust of snow
From a hemlock tree
Has given my heart
A change of mood
And saved some part
Of a day I had rued.

Dishes Needed

We need some dishes for the Celebration after Carter-Man's services. If you are able to help, please contact Sue Mitchell at (540)903-6904 or Rebecca Beggan at (703)371-7765. We need side dishes, casseroles, desserts, salads, or anything you are able to help with.

Services

I want to thank you all for your kind words through this unimaginably tough time. We are thankful for the amazing support! We are thankful for the gift of Carter-Man!! He is an amazing child who taught us all a lot about life and love. He will be missed terribly! We are thankful that he is in the arms of his Heavenly Father and he has finally met his grandfather, whom loves him so much. We are thankful for Carter's home nurse, Cecilia, who is now part of our family. She took amazing care of Carter until the end! We are thankful for the team at Capital Hospice for their care, love, and concern for our family. We are thankful for the wonderful doctors, nurses, child-life specialists, social workers, and case managers at INOVA who took such excellent care of Carter-Man and our family! YOU ALL ARE AMAZING!!!! Carter loved each one of you dearly!!!

The services for Carter-Man are as follows:

Visitation at Covenant Funeral Home in Fredericksburg on Thursday, December 17th from 5pm-8pm
Funeral at Falmouth Baptist Church Friday, December 18th at 2pm
Graveside will follow at Falmouth Cemetery- Carter will be laid to rest next to his grandfather


We are all trying to wear as much red as possible!!! Carter's favorite color is red and his second is blue!! Although black is normally the color of choice, this was Carter's least favorite color. We want this to be a Celebration of his wonderful life. He would want us to celebrate the special times we had with him!

Again, thank you to everyone!!!

With Love,

Courtney

Heavy Hearts

It is with a very heavy heart that I let all of Carter's Crusaders know that Carter passed away at 4:41am this morning. He was wrapped in the arms of his Daddy as I lay next to them. He is now at peace. He will be taken to NIH in Bethesda to have this EVIL tumor removed for research. I want to thank each and everyone of you for your continued love, support, prayers. Please continue to pray for us as we enter another phase of this journey.

With Love,

Courtney

Carter-Man is still fighting

Good Morning, Crusaders! I wanted to post a little update. There really has been no significant changes. Yesterday was a very difficult day for Skip and I. The day started with G-tube issues. When I gave Carter his 8 o'clock morphine and ativan, I did not notice that the gauze around his G-tube was wet. At 9 o'clock when the hospice nurse arrived, we both noticed it was soaked. We did some investigating and realized that the tube was leaking, meaning he was not getting all of his medicine. We also realized that Carter's GI system has slowed dramatically....he is not absorbing much of anything. Luckily, Carter does still have a PICC line. The only problem was that we only had IV ativan, not morphine. Our hospice nurse took care of ordering that and told us we should receive it later in the day and until then we could go ahead and try using the G-tube. Although, we had not been feeding Carter a lot, we had been giving him water. Without the G-tube, we cannot give water flushes or food. I realize we are at the point that Carter is not hungry but from the moment your child is born, your maternal instinct kicks in to feed your child. When they are sick, you want them to eat...you NEVER want your child to feel hunger....eating provides nourishment, vitamins,energy and all the essentials of daily living. It was very hard for me to realize that I can no longer feed my child. This led to a very difficult day. We did not receive his IV morphine until 8:30 pm last night. This was the first day that we saw issues with pain management..something NO CHILD OR PARENT should have to experience. Nonetheless, we managed to get through and were able to give him IV medicine starting at 10:00 pm last night. He had a good night, although his heart rate is all over the place. Before, it was very low, now it has shot back up again. I would imagine this is due to the tumor continuing to progress on the brain stem, thus affecting his heart rate, breathing, and blood pressure. His breathing has definitely changed this morning. He almost sounds like he is puffing rather than breathing. He has large periods of apnea, sometimes almost a complete minute of no breaths taken. Carter has beaten all odds and for that we are thankful. We are thankful that we have been able to stay on top of his pain and agitation. We are thankful that he has not thrown up. We are thankful that we have escaped any skin breakdown throughout this journey. Carter has now been strictly in the bed for 7 weeks and still no breakdown. HE IS ONE TOUGH COOKIE!!! Although we are in the middle of the worst thing that any parent can experience, at the worst time of year (which is supposed to be the most wonderful time of the year), we are still thankful for many things. This is a true reflection of the inner strength that God has given us. Our hospice nurse told us that Carter could pass at anytime. His lungs are clear but it is obvious that his body is slowing down significantly. Throughout the night, his breathing has changed. As the weekend progresses, I will keep everyone posted!! As always, thank you for your continued prayers, love, and support!

Still Hanging in there.....

Well here we are... 4 weeks out from the day we brought our baby home with the knowledge that his time on earth was limited (from a medical standpoint). Carter has FAR surpassed anyone's expectations. Our wonderful hospice nurse is amazed. In her words exactly, she stated, "There is nothing ordinary about Carter". We all already knew that but who would have thought he would have made it this long. She said that she would no longer give us a time frame because Carter was on his own time along with God. He is so strong. He makes us so proud. He has since the day he was born. He continues to prove what I have always said..."There is something different about Carter". This is what I used to tell everyone about him..now we know why!!!! A mother ALWAYS knows her children best!!!

There really is no new news to report. We did call our hospice nurse Friday because we saw a decline in Carter. She came right away. She, too, saw the difference. Although she said that his time is probably down to hours or days (it is now Sunday so here we are at days), she still stuck to her word that she cannot give us time for him. She said she has been doing this for 10 years and she has never had a child like Carter. I told her she probably never would again!!! We are so thankful for Carter..he is amazing....I look at him and I know he is hearing the angels. I asked him one evening to blink if he saw the angels and sure enough, he blinked his eyes. I asked if they were beautiful...if they were here...and again, he blinked!!!
I told Skip about this and he decided to ask him, too and again....he blinked!! Debbie (Carter's Memaw) asked him the next day and again he blinked. She also asked him if he saw Cha-Cha (my grandfather that passed away recently) and he blinked! She then asked him if he had met his Grandaddy Sale (my dad) and he blinked several times- it was blinks of excitement. This gives us peace. We KNOW the angels are here and wrapping their wings around our baby boy. I will tell you that this is HARD....the hardest thing I have ever had to do and probably the hardest thing I will ever have to do. Each day I wonder if it will be Carter's last. It is heartbreaking but we push through and try and remain strong for Carter, Caroline, and Tommy.

I want to thank everyone for their continued support. Everyday we continue to be amazed by the cards, letters, notes, comments, food, prayers and gifts that we receive. I want to send a special thank you to Sandra and Wendy for their support, love, and devotion. They have been here daily since we brought Carter home on hospice. They do everything they can to help..they clean, they cook, and they provide support. They are AMAZING!!! I am surprised there hands are not cracked due to the number of dishes they have washed! THANK YOU LADIES!!!! I will continue to keep you all posted as things change!

Please continue to pray for my niece, Lauren and the families of Andrew and Delaney.

Love,

Courtney

A Sad Week in this Community

When Carter was first diagnosed with DIPG, I started to follow the journey of a little boy named, Andrew Smith. I posted last night that he was declining and that his family needed prayers. He has battled this horrific disease for 25 months. He and his family have touched the lives of so many people. His mother's faith and grace have touched me deeply. It is with a heavy heart I let you all know that he passed peacefully at 1:00am. Please pray for this family and visit their site (I have posted it again at the bottom).

www.caringbridge.org/visit/aws

If my numbers are correct, that is 3 children that have passed this week from DIPG. THIS HAS TO STOP!!!! We have to come together to raise awareness and find a cure for this evil monster that is stripping these precious children of their lives. Please join me in raising awareness!!!!! SPREAD THE WORD!!!!!

PRAYERS NEEDED!!!

I do not have a lot of time to update but I wanted to let you all know that Carter is hanging in there. He is breathing very slow and only wakes occasionally for a couple of minutes at a time. I will try and update within the next couple of days. There are other families that are also in need of prayer. Please add the following to your prayer list.

My niece, Lauren (she has been readmitted to Children's in DC)

Andrew Smith- www.caringbridge.org/visit/aws (please drop the family a note in their guestbook to provide them with strength)

Please pray for all of the children who are battling this awful disease. It is heart wrenching!!!

Love,

Courtney

Another Angel...

I wanted to let everyone know that Sweet Delaney earned her angel wings this morning.
Please keep her family in your prayers and drop them a note of encouragement on her guestbook.

www.caringbridge.org/visit/delaneystarcher