Next weekend will be insane. Friday is the first PA day of the year, and that being said it will be the official start of the weekend. Saturday , Annika has dance in the morning and then we will be joining my brother and sister in law for apple picking at Wagner's. Sunday we will start our week by supporting my cousin and his fiance at The Kidney Foundation , to walk in support for his soon to be step daughter Breanna. She is a young lady who is on the transplant list. Too young to have to deal with transplant already. Sunday night we have our little niece Joelle's fourth birthday. Boy did those 4 years go by really fast. CRAZY! Sunday night, my sister in law is joining me for a long ride to London with Annika to the Children's Hospital. We will stay in Ronald MacDonald House on Sunday night. Monday morning the madness starts.Annika will be admitted for a study on her kidneys . She will have to do nuclear medicine, IVs and some new meds. While we are there over the next few days we will be trying new supplements, enzymes, and will be having a IV port surgically placed. Not sure what we are going to do about this cough she has right now, I am sure they will be giving her some meds via IV while we are there. We will see.
I have struggled with this placement of her IV port. She had one placed 5 years ago, and it lasted over 2 years before she developed a blood infection and it had to be removed. Her last admission we had to stay in hospital for IV meds because after 4 attempts, all picc line insertions failed, her veins collapsed, and would not allow placement. So my biggest fear is another blood infection. When you have a picc line or IV and it gets infected, you pull it and voila, the infection clears up. With an IV port, the port has to be surgically removed.This is my biggest fear. Annika has had thrombosis with her last picc line, and she had a blood infection also. She got really sick. It was a really scary time for us. This is my biggest fear with this IV port. I know I have to put this in God's hands, but nevertheless, I am nervous.
Every month with an IV port, a CCAC nurse will have to come in to our home to do a Heparin flush of the port to keep it functional. My child will be poked at least once a month while she has this, and like a child with diabetes, she will become accustom to it, just like physio and breathing treatments are second nature to her. It still frustrates the hell out of me. It still makes me angry. It still makes me envious of all the parents I know who can just make plans with no thought of medications,and treatments. It is not fair for Annika. It is not fair for Parker. Her bother who has to grow up seeing his sister or mom sick all the time. IT IS NOT FAIR! It is not fair to David, some days he has to be father, mother, friend, and healer! IT IS NOT FAIR!. It is not fair that I can't be the friend I should be. I can't be the wife or mother I should be! I can't be the daughter or sister I should be! It is not fair that Annika might potentially have to feel these frustrations herself in the future! I hate the thought of another admission. I hate the idea of my future cf clinic and surgeon consult in October. You know I just want to be a normal, boring, everyday housewife and mom! I want my biggest concern to be what I am going to make for dinner, and helping my kids ride a bike. I want to hang out with my friends and help them when they need it. I don't want to be in a one sided friendship.....them giving and me taking, taking taking. This is not the life I envisioned when I said I Do. This was not what I dreamed of growing up. I am freaking 40, and frustrated as all hell. I want my son to love school. I want my daughter to never experience another hospital stay, I want my body to cooperate! GRRRRRRRRRRRRRR! I want so much that just comes natural to others. I see people not take care of their bodies by smoking, and drinking, drugs or poor diet. I see them laugh off what they can do tomorrow. I see parents not hug their children, or play with them. I see strangers caring for their children, just so they can still have their social life( we aren't talking about date night, or weekends away) You know the type I am talking about. I personally know people who don't tuck their kids in at night, and scream at them for missing a goal. REALLY? All I want is my kids to get a good education, fall in love, choose a career they LOVE, and maybe if I am really lucky, a grand kid or two. I would love nothing more than to see my daughter marry( if she chooses) and have a child ( if she chooses) Every dance recital I watch , I cry tears of joy, when there are so many parents that just flippantly say " I will catch the next one!" So UNFAIR! I know this isn't a punishment, I don't believe that stupid saying God Only Gives You What You Can Handle! Bull crap! God doesn't punish his children with pain, suffering, and sickness. This isn't God giving me what I can handle! What God does do , He provides me with the ability to handle what is given to me, he doesn't GIVE me the sorrow. He surrounds me with family, and friends ( that at times I am sure I don't deserve) He surrounds me with those who believe. He blesses me with wonderful, loving children. He has given us gifts to deal with this disease. He has given us love. He has given me modern technology, so that I may vent my frustrations to the cyber world. So that I may write and release. Digital therapy . I know that he has a plan for us all. I know I have NO say in that plan. I know it doesn't help to feel jealousy, anger, or dismay. I know all these things as his child are wrong, yet I still experience these feelings this week more than ever.
