On our most recent trip to Dallas. Which was 2 weeks ago. I was not prepared for what the week would lead into. I believed it would be like all our other trips before. With maybe a couple of new adjustments or possibly time to get Jo fitted for compression hoses.
The first two days was that. Then the 3 day came and it was confirmed in that appointment
that her pelvis was now involved. I really felt the world around us shatter. I believe I also made a blog about that visit. Incase I did not or if you hadn't read it. I will put here. I felt defeated. I had worked my butt off for the last 7 months doing everything instructed and expected of me, just to be told in that moment it has moved to a new area. The therapist gave and showed me new MLD sequences to add to our routine. She discussed the new garments and type of compressions we would need and being that her pelvis was involved she would like to get the compression hoses done ASAP.
In the same visit she gave me a flyer. It was info about a lymphedema walk that was going to be held there in Dallas, March 5th. It was a mother who's daughter has lymphedema and they were raising money to help purchase bandages. Of course, I was too consumed with my own issues in that moment to really pay this any mind.
Fast forward to that evening at the RMH. A dance group came out that night to hold a dance party with all the patients. I sat watching through the window into the room they were in (just big enough for the kids and these dancers) and I just smiled. I also remembered the flyer that I had received earlier that day.
Once Jo danced her heart out, something she loves to do. She was done. She was ready to go back to the room and rest. That was fine with me because I wanted to look at the flyer.
I sat on the couch in this room and just looked at the flyer, noticed there was a number and thought to myself, "I wonder if this is the mom." So, I texted the number. I gave my name and Jos story. The reply I got was, "yes. I am the mom and my daughter is 11, can I call you?" Holy cow, Im fixing to talk to another mother. Not just any mother but one who knows
and feels exactly what I am feeling. This is HUGE. Even bigger than that, a connection for JO!
She calls, and we share our stories with each other and she talks about this walk that she organized. With vendors and therapist and would love for us to attend and let the girls meet. Of course I couldn't make promises but I told her I would really love to come and would keep her posted if we were able to. I really had it in my head to make it work some how so we could attend. Even if it was just making the trip there and back in one day. I also knew it wouldn't had been wise of me to promise that before I was certain we could do it.
We left each other with, "I am here for you, text or call anytime." Let me tell you, it was really amazing talking to another parent. Knowing that I now have a network. Something I really didn't expect.
The following day, after her therapist appointment we had a appointment with the garment fitter. Jos garments, are custom made. She must be measured a certain way and then the order is sent in and those garments are then made and shipped to us. As we entered the Women's Boutique, our fitter stopped me at the desk and said, " so, I ran your insurance with the compression hose she will need and the night garment piece she would need. The compression hose is $1400 and the night piece is another $1300. Because it is a new year, that means deductibles etc. play a factor. Yalls deductible has not been met and that would
mean your out of pocket would be $1600. That must be paid before we can order."
If your mouth dropped at the last sentence, yeah that was mine as well. I looked around, trying not to let the tears show. I knew I did not have that much on me. There was no way I could do what I had done in all our other purchases, "no problem, lets do it." For the first time since the journey started. I was forced to utter the words, "I can't do that right now." I knew she saw the horror in my eyes. She preceded to hand me a paper that had the "how to measure" and a tape measure. She told me when we got ready to order to text her and she would FaceTime me to walk through the measuring phase, so we wouldn't have to make a
special trip back just for ordering. I nodded my head, and said, "Thank You." Me and Jo headed out the door.
I had no clue how we were going to come up with these funds quickly on our own. All I knew is all the other expenses we had just come out of pocket on and all the new ones laying on my desk in front of my computer, waiting for payments. The thought of going outside of our little family asking for money just hurt my pride. Broke it would be more accurate.
The following week I spent talking to insurance and other places. Only to find out those
claims have not been processed fully and could take up to a year. Anything we continue to pay out of pocket for we would be reimbursed down the line.
I knew, it was time to lay my pride down and ask family to help. We had wasted a week hoping that insurance did something wrong or missed something and it would all be fixed. In the wait of the week, I went through a lot of emotions. Learning about pride, thankfulness, the cause/need, that this disease needs. The families that are worse off. Not knowing how they are able to properly help their children. It was ALOT of emotions, a lot of reflection and a lot of praising God through this storm. Ours is just for this moment. Other families are constant. With my pride on the floor, I reached out to family and they were able to help with the cost.
Also the therapist reached out and confirmed our new appointment for March 6th-9th on the same day. I knew we would be able to make the March 5th Walk for Lymphedema.
This morning I messaged the mom to let her know that we would be THERE. The reply back was, I want to sponsor you and Jo. Then the phone rang.
It was the mom. She explained to me what the sponsoring would be. I cried. I cried from relief, from joy, from excitement, from whatever other emotions this week had me in.
At the walk, will be vendors. One vendor wants to sponsor a child for compression hose. She told me that her daughter did not need them but from the first time we talked she knew she wanted to have us be sponsored because she knew Jo was going for her first ever compression hose. She asked if it would be ok if this vendor does that.
I asked if there was another family, and if so to sponsor them. She told me there is no one else. We are the only ones that she has come across. She assured me that her daughter did not need the sponosorship that she had everything she needed until next year. After she told me that, I said "YES! and let me tell you about my week." I told her our struggles since leaving the fitters. We both cried together and we both gave the GLORY TO GOD. This did not happen because of the mom or because of the vendor. This happened because GOD knew there was going to be a need, he knew that I needed that flyer that day at the therapist. He knew I needed to contact that number when I sat on the couch in the Ronald McDonald House. He knew we needed to be connected. He also knew that I needed to spend a week in reflection mode. If this news came earlier in the week, I would had thanked him but it would not had birthed the things laid upon me this past week.I would not had the reflection of pride, thankfulness. God moved this mountain while utilizing my low to pave a
path going forward. Hopefully soon I can share with you that path that was born during this past week of reflection. Im not going to lie, my human heart gave way to doubt. As a sinner, we can not help it. I hope to one day, never doubt him. My doubt has never been that he exist, its rather he will answer or not. Frankly, I am undeserving of answered prayers. That's just the reality of it. But through the blood of Jesus Christ and by the Grace of GOD. He finds me worthy, even though I am not worthy at all.
Because of him, the path to connect with this mom was laid out before I ever knew it would develop into a blessing. When I tell you it is ZERO chances of finding another lymphie child
within a driving distance, It is really ZERO. Until now.
I want to add this as well. I attend church. Not because its a place for saints to gather, but a place us sinners gather so we may learn, be convicted, and remember to always lead our life according to HIM.
Rather you struggle with lymphedema or not. It does NOT matter. Pick up a bible. Before you open it. Ask God to guide you, to use the Holy Spirit to have your mind understand it the way it is meant to be understood. And start reading. Start praying. Start thanking, even if you feel there is nothing worth thanking over. TRUST ME HE WILL SHOW YOU. All you have to
do is BELIEVE. FAITH. The same faith you put into a chair before you sit, the same faith you put into your roof before you walk in. Knowing that chair will not break once you sit. Knowing your ceiling will not fall in once you walk through that door. That's all he ask. THAT kind of faith. Amen!