A Heavy Burden

Hi, this is Jon…. I am sitting beside Angelica tonight as she sleeps in her hospital room. She is still “neutropenic” which means that she basically doesn’t have an immune system, and she is getting antibiotics every 6 hours, but she is basically healthy and not doing any chemo at the moment. She tested positive for a bacterial infection last Wednesday and went immediately on antibiotics. She had one day of feeling sickish, and then all better…. except we have to keep the antibiotics going until Friday the 18th (one more week). Its boring and there are lots of vitals checks and hospitalish things that break up any routine, but its boring.

It seems like the other side of the world, Patti is ‘hopefully’ sleeping with the other four kids and it is anything but boring.

Today, Patti called on the phone and cried. The kind of cry that there are no words for… you just hold them and be silent. I think that it is important to know that Patti is one of the strongest women that I know. She is determined, sometimes stubborn and she can bare a lot, but I think that she is at breaking point. I’ll sum up what is going on at home while I am not there, but I am sure that I am not anywhere close to doing it justice.

Everyone has been sick. Patti describes it as a plague that has hit our house. Xandra, Jeremy, Siah and Judah have all had a run-in with some sort of flu virus. This means that they can not come visit and I cannot sneak home to help. We are separated by a barrier that represents keeping Angelica safe until her immune system recovers. Most of the kids have gotten better, but Judah is still not completely clear.

Emotionally, Xandra and Jeremy got thrown when we left. It seemed like life was getting to a normal rhythm after the summer and fall of hospital stays and sickness and coming to grips with the battle of cancer. We were always tired, but life seemed like it almost settled a little. That was until we had to make an unexpected return. The two older kids came completely apart. I was brought to a new realization of how fragile things were, of how fragile they were. There were lots of tears, lots of things forgotten, and no real way to deal with it… dad and Gelica had to go again and the uncertainty for them returned. This has also had an impact on how quickly they respond to requests, which means Patti has to do more to keep them moving in the right direction.

Jeremy was diagnosed officially with a Learning Difference (used to be called learning disability), and the general consensus at that meeting was the he may fall within the definition of Aspergers. This requires a screen with a pediatrician and today was the day for that appointment. This has been something that I have normally taken care of, so Patti had to steal herself from everything else and get up to speed on what to say to the doctor, and take Jeremy to that meeting, which I had given her the wrong time for, so she was late and was scolded by the receptionist… tears flowed… the meeting did happen.

Josiah is a precious 3 year old, and he needs attention. Patti has realized that she hasn’t played with him or coloured with him a lot and realized a few weeks ago that he doesn’t even know how to hold a pencil. Although this might seem trivial in the face of everything else going on, to a mom, there is some guilt that important things are being neglected. Nana Karen (Patti’s mom) has been a real help with Siah… but there is added stress.

To top it all off today, Patti had an appointment with our family doctor this morning to look at her arm. Because Judah is such a big baby, carrying him is causing damage and a lot of pain (the kind of pain that keeps you awake at night) to Patti’s arm. Judah has been hit with the same bug as the older kids, and so we asked if the doc could see him too, which he agreed to.

When the doc walked in the room, he immediately asked if there is a family history of asthma, and indicated that he believes at first glance that Judah may have asthma….. On top of all the food interactions that we have found, and the digestive issues, and cancer, and ADHD, and Aspergers, and emotional instability and lack of sleep,and Judah teething, and Judah waking every 45 minutes or so at night, and family separation, Patti was given a prescription for some steroids for Judah’s lungs that she had to go and pick up.

This is another brick added to the load, even if it turns out to be something else there will be days of thinking and stressing and learning… more things to carry.

As she sat outside the pharmacy, she called. She called and she cried. She cried and then she carried on. She ordered the meds, then picked up Jeremy, then went to the pediatrician, then she went in on time and was told that she was late, then she cried, then she made it through the rest of the appointment with a plan to go forward, then she went back to the pharmacy and picked up the meds, then she drove home and said hi to Josiah and left him for the night with Nana Karen, then she finally made it home to be with Xandra and finally she had some time to talk again about Angelica and her treatment and the infection and the next steps for her.

Patti is amazing and the mother of 5 amazing children, each with a special need for attention and it seems all need that attention right now… for good reason, but compiled, it makes for a heavy load. Patti is carrying it all, but just barely.

If you are able to take a moment to pray for her, she needs:
– sleep
– relief from pain in her shoulder
– healing from whatever is bothering Judah and his breathing
– healing and health for everyone in the family so we can visit each other
– Angelica’s ‘Neutrophil’ count to come up so she is not so prone to infection
– Jeremy’s Asperger screen to be prioritized high and for this process to not take too long
– Alexandra to feel emotional stability, and for the right tracks to open up for her to deal with all these feelings
– and for Josiah to not feel sidelined in our family.

Thanks,
Jon

Author: Patricia Culley

I'm the ringmaster of my own circus. Just trying to stay one step ahead of the monkeys. View all posts by Patricia Culley