I have a love hate relationship with support ribbons. Sometimes I wish there were other symbols to represent awareness of disease. you see these pretty periwinkle ribbons for pulmonary hypertension, bright pink ribbons for breast cancer, purple ribbons for cystic fibrosis, the list is pretty endless. I have witnessed each of diseases and I can confidently say these are not pretty things. they all actually suck and I dont think they deserve to be represented by prettiness. Now I DO agree with the ribbons representing the hope, survivor and the fight of the person.
I love that. We have two ribbons hanging on our fridge representing the hope, and strength we see in Haley. That makes me happy.
I think for people who havent experienced any terrible things....which soon everyone will, maybe a ribbon sends the wrong message. We should have pins that have an enlarged heart and withering arteries wrapped around lungs, or scars where cancer needed to be removed, or lungs filling with sticky mucus. These things are so far beyond sucking, there is not a word to describe them.
People see a normal kid running around playing, laughing and having a blast, and thats awesome, thats what I want you to see. But please realize thats not all the time, and we will pay for that fun later. (but it can be worth it) Please dont give me dirty looks when I yell for my kid to calm down, sit down, quiet down when she is doing the same thing or less then all the other kids. Trust that I, and other parents, know our kids limits.
.............Haley has been doing good. School is going well. She started ballet again. She is going to Experience Arts School. They are allowing me to volunteer to pay for the class! I am so thankful for that! Haley was ecstatically screaming in the car on the way. Ashley puts on ballet clothes and dances while we wait for Haleys class. She can start when she is 3, and she cant wait. I am a bit nervous for how this is all going to work. She is doing good energy wise so far. They will have a recital in May. We will have at least one catheter during this time. But I am pretty sure she will need to take off from dance at least one week. Thats alot when your five trying to learn a routine. I am not sure the chances of heart surgery before May.
Im getting more and more nervous about the thought of surgery. What if we fix the holes, and the hypertension doesnt get better? What if it stays worse? What if we choose to do surgery and we make her more sick for the rest of her life, however long that maybe? If this is a huge chance will we have an option to stop meds and leave her as is letting her body work as it was before until one day when it didnt anymore? What if..? what if...? It stinks, why cant it be this is whats wrong...its fixable or its not. Nick and I are going to have to make a stupid tough decision soon. Pray with us and for us. My prayer is for complete healing, miraculous, beautiful, super natural healing.
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I get misty-eyed when I read what all of you are going through. The ups and downs you are experiencing. The hope; the disappointments; the uncertainties. Most parents would rather trade places with their children to take the burden off their children. Very much like what Jesus did for us. Our children are a gift from God. They are loaned to us to raise and protect for a short time until it is time for them to move on. We need to enjoy the moments while we can. It appears that is exactly what you are trying to do even though your circumstances are much more challenging and uncertain than what most parents go through. Your trust in God will continue to help you through all of this.
ReplyDeleteMark Etheridge