So, needless to say it's been a pretty rough week. Monday started off with the news that Toby needs yet another surgery on Friday. His rods are not staying attached to his ribs or his pelvis like they should. He was also referred to the bone density clinic to see if that may be one of the reasons the hardware continues to work itself through his hip bones.
For some reason this surgery is hitting me harder. It's not any different than the one he had in September, except this time it's the right side instead of the left. Maybe it's because VEPTR feels like a ticking time bomb, and you never know when it's going to go off or when the surgeon is going to say enough is enough - his body can't take anymore - and we are running out of options to straighten his spine. Maybe it's because it's that time of year, and several days in the hospital throws me for a loop. Maybe it's the crazy list of "to-dos" that gets longer and longer. I am such a perfectionist, that I don't know how to let go - every thing that I have listed in my mind that must get done and it will get done!!! I'm sure it's a combination of all of the above.
After the surgery news, I took Caris over to the lab for her first blood draw. They had to take around 35 ml of blood out of that sweet girl (that's over an ounce of blood). We are seeing a new doctor that takes a more natural approach to medicine, and we are wanting to get to the root of why two years ago she developed respiratory issues and has been on Singulair ever since. Every time we try to stop it, she gets a respiratory illness. I really do not want her to be on this medication long term, but something is causing respiratory issues (coughing, wheezing, runny nose, etc.). When we went in for the blood draw she said to me, "Mommy, I will try to be brave." She was so brave, didn't even really cry until it was over. We are trying to get her off dairy, but oh my goodness - it is so difficult. Food allergies are a new hurdle for us, and I admire all of you that deal with this on a daily basis, especially when it is life threatening. I can't even imagine, but it's yet one more thing to deal with right now.
We had a wonderful time on Toby's Make-A-Wish trip to Disney. The trip was perfect, and I promise to post pictures and details soon. The timing was perfect, we met wonderful people, and Toby and our family was treated like royalty. It was such a blessing; we had a great time together as a family.
Your love and prayers have been surrounding us. I am at peace in my grief, and can feel the arms of God holding me right now - He truly is holding all of us up. It is so hard for me to accept help, I feel like I can never repay what everyone has given to us (meals, visits, prayers, house cleaning). I know that I should not look at it as a tit for tat, but I am wired in such a way that I don't want anyone to ever think we are "that needy family" that never gives back. I also want our children to serve others - to not feel entitled.
I'm also learning, though, that it blesses others to give to us, that our kids are seeing real life - what it's like to give to others, how to be thankful and humble in tough times. It's also sinking into my heart that we all give in different ways, and God is still using us...that is humbling and awe-inspiring too.
Today, the most amazing display of God's love happened to me, and I was so thankful to share this with our kids afterwards. My middle sister Lynsey and her husband Anthony have been staying with us this week. They are in the process of moving from Nicaragua to South Dakota, and are going through major transitions of their own. Last night, Lynsey, Caris and I had the wonderful opportunity to do some Christmas shopping together while the boys were blessed to see OSU play basketball. I bought some Christmas presents at Kohl's, and realized as I was checking out that my coupon for 25% off wasn't good until the next day. I could only get 20% off today. I went ahead and made the purchase because I'm not sure when I'll get the time again, but today it was bothering me so much I decided to go back to Kohl's and see if they would make a price adjustment. PLUS - I can earn Kohl's cash today.
I know I can be long-winded, but bear with me. So, being my Type A self, but also having some extra time today while the boys were at gym class, I ran over to Kohl's. For once in my life, I went up to Customer Service - calm and not demanding that they "fix this" for me. I politely asked if they would return the items, and offered to take the returned items to one of the longer cashier lines to re-pay for the items, get the bigger discount and the Kohl's cash. She said, she didn't mind doing it there, and I offered a few times, but she was gracious and returned the items, and then re-rang. As often is the case at Kohl's, one of the items rang up more expensive because they change their sales for the weekend, and so I mentioned to her that I may not take that item, but would wait until the end to decide. Then, I decided to just take it, the price difference wasn't that much. After a moment she said, "I'll just change the price to what it was yesterday."
For a moment, I was taken aback, and then I began to tear up at her kindness. She was being so patient, and God prompted me to tell her about Toby. I told her that we have a six-year old son who's having his 22nd surgery tomorrow at Children's, what she did had truly blessed me, and I thanked her for her kindness. She turned to me and grabbed my hand and said, "I prayed this morning to give someone a blessing today, and I didn't know who that would be...it was you." We both teared up then, and we talked about God's amazing blessings and how good He is. She asked more about Toby, and I was able to share about him. She told me she would say a prayer for him.
It was just an amazing moment, and God was able to show me how He connects the body of Christ through complete strangers. I know right now there are people that don't even know us personally praying for us and for Toby. The Bible says, "How precious to me are your thoughts, O God! How vast is the sum of them! If I would count them, they are more than the sand..." (Psalm 139:17-18a). What is truly awesome about God, is His love is available to anyone - no matter what you've done or who you are. It's not an exclusive club and there isn't anything you have to do to earn His love. There is one thing, that is required, though, it's surrender - to turn from sin and accept His grace and forgiveness. Some have mentioned that our strength is amazing, but it's not mine - it's God strengthening me (Philippians 4:13). Some have said that they don't know how we can go through so much and still have smiles - again it's not us, but the peace that surpasses all understanding when we lay our burdens at His feet and let Him carry us through. (Phillipians 4:6-7) Some might say that this relationship with God is not for them - it's not available to them, but it is - we pray you will see that and accept it.
I am beyond blessed today and am so thankful for all of you. Thank you for storming the throne of grace with your prayers, we are lifted up. I am rejoicing in God's plan and taking today one hour at a time. God holds tomorrow, and as He has proven to us over and over and over again. He is faithful and His love is amazing. Surgery is at 10:40 a.m. We have some crazy snowy weather coming in this evening, so planning ahead for that possibility too. We will keep you posted.
(P.S. It was the Kohl's on Sawmill Rd.)
