JUNE 7, 2015
Being a mama of six kids, I have realized that I just can’t cry. I don’t have the time to sit and cry. No matter what is going on, no matter how bad things get… I can’t cry. If I cry, I break. If I break then I’m done. And when I’m done, the day is done for me. And now that I am home alone with the kids, I can’t break. I am all they have. So I REALLY can’t cry.
I was talking to another NICU mama the other day. Her son was in the NICU a few years back. And her son went through everything that my son IS going through now. And through our conversation we were talking about how “other” people don’t understand.
( We mean “other” people as in parents who have never lived in the NICU for weeks and months at a time…parents who have never begged GOD on a daily basis to save your child…parents who have never had to hold their child down on a table while being poked numerous times to get blood drawn…parents who have never made life insurance and funeral plans for their child… parents who have never wondered and prayed and held their child with the thought that this may be their child’s last breath, their last heartbeat, their last day and night on earth…parents with perfectly healthy children…*sigh*…I used to be an other…)
I asked her if it gets easier as time goes by. And she chuckled and said… no. By her chuckle I thought she was being sarcastic. She shook her head and that was it. At one point I knew she was serious but I was hoping she was joking. She shook her head again and said “It never gets easier.” She said, “You, as the mother of a warrior, will get stronger.”
I think I may have had a slightly sad look on my face because she then started talking about how it IS an amazing journey. Lots of good days. Lots of fun days. Lots of days where he is NOT sick. But the times where he is sick …days at a time… weeks at a time, they become familiar. They even become routine of some sort.
I told her that I already have those days. Days where he does nothing but sleep and vomit all day. Days where he just whines and cries. He has sensory processing disorder so he doesn’t even like to be held. Those days, there is no way for me to comfort him.
She continued saying that the wait for transplant is less of a roller coaster than the NICU. But the transplant roller coaster has higher drops and scarier turns. She said she learned to just hold on for dear life and let God clear the path. She said that as time passed, as the days flew by, as the weeks and months continued… life became a routine. Life was still very hard, but she learned to adapt. She learned to read her son to where she knew if he was going to have a bad day or a good day. Despite of how hard life was…. she got stronger. Life was just a routine. Nothing changed. Her son was sick and wasn’t going to get better. He will never get better. My son will NEVER be better. THERE IS NO CURE FOR KIDNEY DISEASE. Getting a transplant is like being in remission. It’s not a cure, its a time out. It’s us being able to finally let out the breath we have been holding since the day our babies were born. And it lets us breathe normal for a little bit of time until the next time he will get sick. But it is guaranteed that he will…. he will get sick again in time. Only this time, he will be older and he will hopefully understand more of what is going on. He will be able to be vocal about his discomforts and pains.
Her son got stronger. SHE got stronger… and I know I will too. I know my son will too.
…it will NEVER get easier. YOU will get stronger.
God Bless Everyone.