It’s been a tough hospitalization and still here. Its hard enough to be here but to actually start feeling like things were slipping out of control was very frustrating. I came in feeling pretty good and as I started to get probed and poked; little-by-little things started to feel all bad.
This past week this hospitalization started to take its toll on my family. My youngest broke down in class. This is just a couple of days after this whole walking home fiasco which is a whole other story. I tend to think my youngest doesn’t have a care in the world but its the opposite. After all he’s the baby. I know we all deal with my health issues in different ways. I like to think life just goes on and for the most part it does. It doesn’t change that we are emotional creatures by nature. I’m around boys and testosterone all the time so I’m usually the most emotional creature in the family.
So my baby boy had a yelling spat with another student and his teacher. This is just a couple of days after I told his teacher about my hospitalization. I didn’t mention it because I thought it be a short hospital stay. However, we had a communication issue on the tutoring schedule and while my hubby and my mom came to visit me at the hospital tutoring was cancelled. My youngest didn’t tell us and last week my mom went to pick up my boys and I forgot to tell her about tutoring. Well this time Quez was just confused. He tried calling dad once and decided to walk home. Call us paranoid but we don’t ever let him walk home. Plus he didn’t tell anyone that he was leaving the campus. So I wrote his teacher and principal about what had happened. Also, letting them know that I was hospitalized again. They both know of my situation. It’s why Quez was acknowledged earlier this year for overcoming challenges while managing to be a model student. I also wanted them to let me know if there is any concerns with Quez because I just don’t know how much it bothers him when I’m at the hospital. Than here today he did end up having a mini melt down. He didn’t like how his teacher mentioned how I was in the hospital. He told his teacher that was nobody’s business. If you know my baby boy you would know how this boy talks.
It’s a hopeless feeling because what could I do to make this better. We do everything to make the best of our situation. Drawing close to one another and we have had many moments where we hash it out. We are very open about what we’re feeling and its apart of our family dynamic. I don’t always share too much in detail of these moments, they are our private and very personal but my family all knows how open I am and there is so much to be said in the honesty of these moments.
My hubby goes to the school to talk to him and he ask our boy whats wrong. He tells him he’s frustrated that I’m in the hospital. Just typing this makes me tear up. He has told me he had friends say that they heard I had died. This is scary stuff and its something I hate to talk about with my boys but I have had to. Especially in this past year with all the surgeries. It was the first time I wrote up an advance directive. The spine surgery was a very risky surgery and I needed to make my wishes known. I made sure to talk to the boys about the risk and to let them understand that we all don’t know the time we are going to be called to heaven. We have experienced so much loss in the past couple years that it’s something that they know very well. They don’t like to even think about me being called home anytime soon. I’ve assured them that I’m not scared and that our lives here on earth are short compared to eternity. I know its easy for me to say and not easy at their age to fully grasp but I wouldn’t want them bitter or mad if that time had come sooner than later. It’s a topic that I don’t even like to mention but I know when I get sick or hospitalized this thought becomes a reality. Even as the doctors explain what they are doing. They have this way of telling me they want to do everything they can restore my health but they have to take every precaution so they don’t kill me in the process.
This is the harsh reality and there is no sugar coating death. No one is prepared for it and I sure don’t like to think about it but I want me and my family to come to terms with it somehow. We are all individuals and I don’t have control of how we all personally handle these thoughts. Even though we are very open its something we “hate” to talk about. I felt that these conversations have been healthy for us as a family to talk about but there is no easy way to go about it. I think I’ve come to terms with it and I hope this isn’t a form of denial. As much as I worked through recovery. I’m pretty good at pointing out if my head is in the clouds. I don’t know if this is a huge coverup developed to cope and if it is I think this is the exception and the healthy denial to have in your life.
This past weekend after the IVIG infusion I was sick as a dog. I went from being alert and active to being in incoherent and in pain. It was all bad. I wanted to not feel the pain that I was feeling. These are the moments I question God. I never want to question our all mighty but when the flesh is in agony its a cry to help me understand this moment. I know He doesn’t want this for me. What have I done? What am I missing? All these questions pop up and all I here is just rest. As much as I wanted the throbbing migraine to be done with I had to go through it. I am hysterically trying to calm down but I can’t. My hubby is doing everything he can. Grabbing cold compress and rubbing my back. I’m rolling back and forth like I’m possessed and propping upwards with every gag. Throwing up anything and everything. I had several full days of this and it calmed down. The hospital was concerned that I was having a severe reaction from the IVIG which is meningitis. I was immediately transferred to an isolated room. It was upsetting because I was leaving the transplant ward and the room that I loved. I broke down. On top of this my old lesions in my lungs from the infection became an area of concern. They now wanted to rule out TB.
I wrote on my Facebook: 03/31: Day 2 of not feeling well. They are about to do the 2nd IVIG & yet to recover from the 1st one. Unable to eat & get out of bed. I need some major prayers & breakthrough. This is the part I HATE 04/01: It was rough couple days & didn’t know if I could get through it. Thank u for all the prayers because I finally broke the pounding headaches, fatigue & took a few bites to eat. They moved me to a quarantine room for precaution w/ all the symptoms. This is protocol but now I really can’t see my boys & more testing. I’m trying my hardest to stay strong but I honestly feel tested. I want this all to be over it feels like a nightmare. God please keep providing me the serenity to get through this. I’m so weak in my own strength, I need you more than ever!
My sister wrote: I woke up this morning heavy with hearing your cry sis when we talked yesterday. I love you so much and God will never waste any of your pain…I could promise you that. It was confirmed today at church that I know you will have victory over this once and for all. Your a true warrior and you will win this fight. I know it. I feel it.
When your beloved has cried out your name weak and in pain for so many years
The agony, her tears.
She doesn’t deserve it.
She loves you so much.
She remained faithful, in spite of living in sickness.
Living every day like its her last.
Loving her family with everything she has,
… not living in the past.
Always looking in the future, trusting you God that you have her in your sweet embrace.
Oh Lord, her cry this time, had me die inside.
So I come to you and just wonder…why?
I intercede and continue to pray…that your healing her as we speak.
That this nightmare is over and will never repeat.
Nothing is impossible with you God. I have seen it with my own eyes.
So please more than ever, hear my sister’s cry. -tess
Sharing these post had led to a huge support system. I was deeply touched and it help me realize real quick that God was still with me. I hate to admit that these times I feel abandoned by God because that isn’t who He is. I have to keep in the forefront all that I’ve overcome with prayer and petition. He has always been faithful. This isn’t the first time I had to question God, “what He was doing?” and I think this too is healthy dialog. During my delirousness Daniel asked me if I wanted him to read scripture and I asked him to read me Job. If I ever want to feel sorry for myself I go to the book of Job and it always humbles me. Here he was a blameless man full of integrity and was tested with losing just about everything including his health. I can’t even compare myself to Job but I could relate with the dialog he had with God and people. It doesn’t make sense for a believer to go through so much trails and pain. However, when I got all the Facebook messages I was encouraged by all the faithful comments. I don’t think for a minute I lacked faith I just needed to hear from Him in a time that I felt so distant. He surely used His people to give me comfort. I’m very thankful for sharing because it’s what God wants us to do. He wants us to encourage each other in our lives.
I unfortunately had 1 more day of not feeling well but yesterday was a full day of feeling well. I took full opportunity to get in the shower. My hubby and oldest son came to visit me and we walked around the ward. I took as many bites to eat of each meal. I finally felt the serenity God provides. This morning I woke up feeling good and I told each doctor I was ready to go home. The goal is before Easter Sunday. My sputum test showed that I don’t have TB and CT scan showed that I don’t have meningitis. I am no longer in isolation but don’t know if I’ll move back to the transplant ward. They still want to do a bronchoscopy. Transplant team wants to rule out everything. I’m willing to do whatever. We are now just waiting for the antibody test to see if all the antibodies that my immune system created that was working against my kidney transplant was removed with all the treatments. They think since my creatinine is stabilizing and my urine output is good that things are looking good.
Even though this isn’t the first time I’ve gone through a hospitalization it never makes it any easier. As a family we go through it together. Parenting isn’t easy and definitely has been more challenging with my health issues. We hope to have the chance for some normalcy. I dream of this. We deserve it. I don’t know what tomorrow will hold but I know today I will have to remain grateful that I am still here. I will take the opportunity to let my boys and husband know how proud I am of them. How much I love them and that I will keep fighting to be with them until there is no more fight to fight.
This is something I must trust God with…
Quez receiving his “Every Student Succeeding” certificate. They recognized how he was able to succeed in school despite the challenges we had at home with my health issues. I’m thankful for his principal, mentors & teachers. That all have nurtured his strengths & recognize his abilities. He was really happy to be honored today. All the students had amazing stories. Very heartfelt breakfast.