My parents always taught me that if you had nothing nice to say, say nothing at all. I was taking that stance the last month because it’s been a messy disaster and I was feeling like such. It seemed like everywhere we turned the numbers were not falling in our favor, and three of our kidney friends were/are in sticky situations. It seemed like trying to live a life was a novelty that we would not be afforded during the winter months, and I began questioning my “can do” attitude.
There is a fear, that never leaves, that you can not protect your child. It makes you start flailing your arms wildly in hopes that you can at least figure out some way to somewhat lessen it…or gain more control.
It’s hard when people don’t understand how fragile these children are, so they are surrounded by other kids and adults with fevers (avoid kidney kids if you have a fever) and runny noses and coughs and siblings who have been exposed on a constant basis. Because they look fine, because they play like your child…they are treated as such. However, for these kidney babes, it’s like putting them in the boxing ring with their hands tied behind their backs. With immune suppression, they suppress their body’s natural reaction to fight off foreign germs. The problem is they don’t know what they are suppressing.
I am happy to say that today, we won a victory that we thought we were losing. It has given me the hope back that was somewhat faltering. It’s hard to be brave, but the truth is that you wake up everyday and decide what kind of day you are gong to have and you can’t take hope away. There is a bright future for our kids, it may be filled with hills and valleys, but eventually you reach the top and see the sun. Gav’s numbers are back to his normal range and the reflux into the kidney is showing some relief (this is huge…HUGE).
WOnderful news about Gav’s reflux improving. Jill, you are so eloquent in describing my own thoughts and feelings. The peaks and valleys are deeper and higher than others but I have to remember everybody has issues. Yes, some more life threatening than others. Our boys are gifts from God and have great purposes for their lives. What a blessing to be a part of it! I hope Gavin had a great 3rd birthday. You are in my thoughts daily and I am looking forward to seeing your sweet new baby girl this month!
YAY, I’m so glad that his numbers are back to normal! That is such great news! That is awesome that the reflux is getting better as well. Hopefully you will have a nice, quiet next few months as you prepare for your newest member.
Hi! Just wanted to stop in and wish Gavin a belated Happy bday!
Ps-Our big “T” day has been set!
I know how you feel about people with sick kids bringing them around your kid. Thankfully my sister is a nurse and was very great about keeping my nephew away…even though he loved Aidan he understood. It is amazing how a little 3 year old can understand why he can’t visit baby Aidan. I also hated it when I went to work at the portrait studio and people would bring in their sick kids for photos. I almost always took a pass on taking these kids photos. Thankfully my manager understands.
I am so glad Gavin is doing better though. He is a strong little guy! And you are awesome too! I think all of us Kidney mommies are Super Heros.
Jill, it’s fantastic news that Gavin’s reflux is getting better!!!! Your words are so true about keeping sickenss away from your immunosupressed child. People don’t udnerstand, not even family sometimes. It’s crazy. I’m glad Gav is doing well!!! I can’t wait to see him again. Take care!!
You said it so well. People do not realize what immune supression is or the simple things that they can do to positively influence anothers health.
I’ve followed your website for awhile. God Bless.