Jones Family

Jones Family
November 2009

Saturday, May 9, 2009

Thankful

This is going to be a selfish post. Brayden's still sleeping and I have to be honest. The last 2 days have been the worst since we left ACA. Not in terms of Brayden's health. I guess in terms of me slowly coming out of shock or denial or whatever it may have been. The weight of all of this is slowly settling in on me and it's been almost more than I can bear. I know God doesn't give us more than we can handle. Which is why I'm finding myself begging for him some reprieve. I told Bryan last week while Brayden was sleeping on the way home from Little Rock that I can feel myself aging. It's the most stressful situation and one that you feel completely helpless and I'm scared the other shoe will drop. I'm scared. I guess that's the bottom line. I guess after the first 2 comatose days in PICU, I began to get good news of the success of the chemo, and little by little, just tried to stay focused on the next few minutes, hours, and not look past that point. Now that we're home, I've received messages from other moms and finally decided to look at their Caring Bridge sites or blogs and had NO idea what we're up against. I had stopped myself from doing research earlier on because I didn't want to know. Now, I find myself grieving the loss of what was to be for Brayden in this next year, two years, maybe three. I'm praying it's shorter, but I'm realizing how much will change for him in these critical times of his life: while he's still a little boy finding his way and developing his own opinions and wanting to be sure he still has that strong foundation of who he is on his own. It's so hard to wrap my brain around what he can't have right now that I don't think he even realizes: Ally's birthday party, fall football, Church, family visits, friends and school, travel, a trip to the mall. So much seems out of reach and I don't think he realizes right now for how long it really will be...

I told my sisters this computer will soon be my nemesis. I can't do anymore research and, what's scary, is I barely did any last night. I can't hear of other kiddos and other stories of those who have Brayden's same diagnosis because I can't handle the thought that he might face the same struggles or obstacles or length of time for treatment, recovery, relapse. All those ugly words. So I'm being selfish and not doing anymore. I've armed myself with what I need to know, how to take care of Brayden now, and will have to stay focused on where we're at. I thought I could reach out to other families and mom's and look to those kiddos to offer support to Brayden but those thoughts scare me and I want to protect him from that right now. I know I can't forever, but I just can't see putting him through that. So sorry for being selfish today. I had to get some things out and maybe be real and show everyone, yes, we did well for a while, but it's really weighing on us right now. The magnitude of the battle ahead is setting in and it's so painful. Please pray for us, when you can, for comfort, peace, and remembrance to let God help us shoulder the burden of this. It's so easier said than done, again, I think especially for us mommas.

In this tough couple of days, I've found myself being thankful. Thankful for the strangest things I never could have imagined to be thankful for before. It's aggravating that I am thankful for those things in one aspect...and calming in another. Maybe that's what will help us keep going. It's what helped us in the early days. I wanted to share a few of them with you and I plan to re-read and remember we do have so much to be thankful for during these times.

Thankful for...catching this disease when they did. Thankful for an ER visit; a Dr. that didn't over-medicate and give him steroids 4 weeks before which could have been catastrophic to the chemo effectiveness. Thankful if Brayden was carrying these cells, they were caught early in his life; later is so much more difficult to cure. Thankful he's our only child. It's hard even to read that when we were so ready for another little one. But I know now it's helping me put my sole focus on him and his health, care and well-being. It's helping to keep our family unified in this fight. We don't have to worry about germs from a little one, or that little one feeling left out, or trying to protect them from the hurt of seeing their big brother go through this, or dividing our family in trying to take care of everyone. I'm thankful he didn't have to have any invasive surgery. He wasn't strong enough to make it early through that and I'm thankful there was no reason to and that his early healing kept him from that. I'm thankful for the Dr.'s and Nurses and staff at the ER, the Angel 1 crew, the PICU staff and Hem/Onc teams at Arkansas Children's Hospital. I'm thankful for the moments when those God Hugs come...they keep me going. I'm thankful we're home and only have to travel 250 miles to get to ACH. We could be spread further apart or be in another facility much further away from home. I'm thankful Hershey's with us and can stay. Thankful for the effectiveness of the treatment so far. Thankful for no fluid around his heart; healthy liver and kidneys; thankful for Stage 2 cells in his brain and spinal fluid and not Stage 3. Thankful for Rapid Early Response in his bone marrow to the treatment. Thankful for Brayden's positive spirit and his mature handling of this journey he's now been placed to walk. Thankful for all the family and friends and support we've received both in visits to ACH, letters, emails, phone calls, care packages, and most of all, prayers. Thankful for his school, their support, and the prayers and love of the entire ACA family. Thankful for our jobs and being able to keep our healthcare coverage, getting a paycheck, and being blessed with a home and cars, things that so many don't have. Thankful for my little family that provides Brayden with a mom and dad that love each other, have faith in God, and almost 13 years together to prepare us for this journey we will now walk together. Thankful for the most amazing son who loves big, cares so much for others, laughs and loves to have fun, enjoy life and finds joy in the smallest of moments...thankful for his hugs that give me that boost I need and thankful for his endurance to keep doing the things he doesn't like but that he knows will help him. I'm thankful for his prayers and his faith in God; for his acceptance of Jesus almost 2 years ago. I'm thankful for Brayden.

13 comments:

  1. Lisa I can't offer you any advice because I have not been where you are going. But I do know from what I have read that you are an awesome lady and very strong. You can do this but only if you take care of yourself too. Keep praying and know you have some pretty powerful prayer warriors working on your families behalf. Lots of cyber hugs for you.

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  2. Hello Lisa,
    I havn't been threw what exactly you have but close. My neice Autumn has shaken baby syndrome. So I can say that I understand what it is like having a love one get hurt. You will make it threw. Yes. It is hard. You are a wonderful person who can over come all of this. Brayden is lucky to have such wonderful parents like Bryan and you. I know you can do it. I love and miss you guys.

    Love,
    Jean

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  3. Oh, Lisa...I so wish you did not have to go through this. I wish Brayden did not have to endure this. Reading your post reminded me of where I was just one year ago. I found myself clinging to anything and everything to be thankful for otherwise I would have lost my mind completely. I hope you can continue to find moments of peace. Moments is all we can ask for when going through such a difficult journey. Don't ever feel selfish or wrong in any way when you have the moments where it is difficult to see through the hardship and sadness. If you didn't go through these emotions it wouldn't be healthy. I pray for your peace. I pray for more moments of gratitude. You will come through this so much stronger and will be able to handle anything that comes at you because it all is less significant once you have seen your child through illness.

    Don't ever feel guilty for not wanting to dive into this world you now live and get emotionally attached to other stories. But, if at some point in the future you decide to take that path it could help educate you on how to handle and be prepared for unexpected bumps. I don't want you to regret sheltering yourself from the knowledge in case later you feel the information would have been helpful to have.

    I hope you have many blessings tomorrow and can enjoy your gift of motherhood. You are the perfect mother for Brayden to have - he is so lucky.

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  4. Lisa,
    My heart aches for you & your family & this trial you are faced with. While I don't understand His ways I do know He promises His grace is sufficient. You may not always FEEL His love for you but I can already see that you KNOW His love. Your family has already been a testimony of your faith. I pray that you have a wonderful Mother's Day

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  5. Lisa,
    I haven't been through the exact situation of having a very ill child, but I did go through being a "single parent" while Mark was deployed in Iraq for 15 months. The biggest lesson I learned in that time period, when I was hitting my knees and telling God I couldn't do it any more was that accepting your own weakness is when God can truly begin to work in your life. I know it sounds so contradictory, but for some reason it works! Thanks for being so transparent. It helps us know how to pray for YOU in addition to Brayden.
    Mrs. Golaway

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  6. I thought that you could think about doing this. I have it on my myspace. When I saw the map that you guys are doing I thought well she might like this. It tells you when people veiw your page. It says the town, state, country, the date, and time. It might let brayden know who all are looking at his blog. Even though they arn't posting or following. I love and miss you guys.
    Love,
    Jean

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  7. http://www.maploco.com/
    sorry forgot to put the site. LOL. love ya

    Jean

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  8. Lisa, thank you for your honesty; as has already been said, it helps us know better how to pray for you. There's nothing wrong with feeling overwhelmed; any of us would. I believe Jesus felt that Himself in the garden before His arrest. And the peace He had in submitting to His Father's will, is what will hold you together too, one minute at a time: knowing God loves you and knows exactly what He's doing. "Since, then, we have a great high priest who has passed through heavens, Jesus, the Son of God, Let us hold fast to our confession. For we do not have a high priest who is unable to sympathize with our weaknesses, but we have one who in every respect, as been tempted as we are, yet without sin. Let us therefore approach the throne of grace with boldness, so that we may receive mercy and find grace to help in time of need." Hebrews 4:14-16

    Jane Caster

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  9. Lisa and Bryan, thankyou for being real and sharing your feelings. The reality of life is where God deals with us. Sometimes the only thing we need to know is the next step instead of trying to figure out the end of the journey. Our quest for the story line is unattainable since He is the only One who knows that. Thank the Lord that He knows exactly where we are in our journey and that He is there with us.
    You are correct in pointing out the many things for which we should be thankful. For every negative in life, there are many positives. Our family continues to pray for your family as we have come to understand how our lives can change forever...The Hill Family

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  10. Hi Lisa, I'm not sure how I got to your blog (?) but just wanted you to know that we've been there and as a cancer mom I know how you feel and I'll be praying for you. My son was 7 when he was diagnosed and will be 5 years cancer free in August. 5 years. (The magic number - they are considered cured after 5.) We praise God every day. My word after diagnosis? PERSPECTIVE. As you know everything changes after diagnosis day. Don't forget Brayden will get to take a Make a Wish trip. Maybe he could keep a list of things he sees that he might like to do? If I can help please let me know as we are Lowell, just post to my blog. :) Jan Dorothy

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  11. Lisa,
    This Mother's Day reminds us of the special role of moms. You truly rate at the top. Your writing has shown the precious love you have for Brayden and Bryan. It has been, and will continue to be, such a testimony of how God carries us through hardships. God tells us to live one day at a time with Him right beside us each step of the journey and in those times of doubt and discouragement there is peace in knowing "it is then that He carries us." Please know you have a great number of people praying for you and lifting you up to our Father.
    Mary McCall

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  12. Lisa,
    First of all Happy Mother's Day (a day late). Brayden is a very lucky boy to have such a dedicated, loving mom. Bless your heart for all you've been through so far! You may not feel it yet, but I'd be willing to bet it's making you stronger....preparing you for the battle ahead. All I can offer are words of encouragement, so hang in there. Keep your chin up. If you don't feel like you can do any more research for the moment, then just don't! Give yourself a break from it. One day at a time, my friend...
    Mandy Hougland

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  13. I was moved beyond words by your blog & had to type a response this time. (Especially after reading sentences 1-4) When one is first hit with news, (such as yours) that shakes us to our core, just as you were....God protects us from the full brunt force of it all, by letting us be a little numb to it all in the beginning. It would be overwhelming if He didn't.

    Then, as a parent, with so many decisions to make so quickly, you just take one at a time & do your very best for your child & handle one decision at a time. (just as you & Bryan did) There's really very little time for thought or reflection or time to come to terms with the news you've been given. (until later)

    I truly believe that God shelters us from the full force of all those waves of feelings in the beginning, so we can do what needs to be done & make the decisions that need to be made for that particular moment in time. No more, no less.

    But, then....later when all the delayed feelings & emotions (because of so many decisions & so little time in the beginning) - come crashing in,...it brings a flood of feelings that truly are "normal" to feel. No need to apologize for being "selfish", because you couldn't be that if you tried! You're one of the most giving & caring people I've ever met in my entire life! You always put everyone else before yourself, always. It's just that now it's your turn to feel what you need to feel. And, it's okay to feel it now. That's why God numbs us to all those feelings in the beginning or it would be overwhelming too much to handle.

    You said that you were praying for a reprieve. That's my prayer for you today, that God would wrap His arms around you & allow you to feel all the love & prayers from all of us who follow your blog & draw strength from that for today.

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