Summer just ended, right? Seriously. Where does the time go?! I looked back at my last post and realized I missed September and most of October! To say we have had a lot going on, is a complete understatement. So much has happened since mid-August and trying to stay on top of it all is extremely exhausting.

Luckily, we survived the summer! I won’t lie and say it was an easy one; honestly, probably the most difficult one we have had yet with Greyson. The lack of support we received over the summer was very tough. We went from always having someone here, to only being here a few hours a week due to availability and his summer school schedule. Derek switched jobs in late August, opting to leave the center-based autism program he was at, to work back out in the field with clients in their homes, schools and daycares. This gives him a lot more flexibility with his schedule and allows me to have a bit of flexibility with my work schedule, too. I am continuing to work from home 90% of the week, with exception of one morning a week, when I work in the office with the therapists at our office’s location. My job continues to be flexible and great when it comes to work-family balance and they are so supportive in all that I do at the company.

The end of August and early September were tough for us as a family. Greyson and Derek ventured into inner-city Philadelphia for a week long EEG at the Children’s Hospital of Philadelphia (CHOP) to try and pinpoint where exactly his seizures are happening in his brain. This information would give us some insight as to whether surgical intervention is possible to relieve Grey of the epilepsy. Unfortunately even with the titration of his seizure medicines, he did not have a grandmal show up on the EEG. The results did give us some information regarding the abnormal brain activity in his parietal lobe, but not enough to tell us if surgery would be an option or not, yet. Our future plan is to do a repeat EEG cold turkey from meds, and to have a repeat MRI to assess for any new or developing white matter abnormalities associated with his Periventricular Leukomalacia (PVL): the pre-cursor for Cerebral Palsy.

During the second day of Greyson’s stay at CHOP, our family was hit with a devastating blow. Derek’s step-father Rick, or “Pappy” as he is known to our children, had a heart attack while working out at the gym he was a member of. The ambulance took Rick to LGH and he had emergency surgery to relieve a blockage in a large artery of the heart. Derek made the difficult decision to remain in Philadelphia while Rick was admitted to the ICU at LGH, due to the severity of his condition, and the fact that he was basically unresponsive for several days. Among the countless machines that Rick was attached to and the several surgeries he required during the first two weeks in the ICU, he was placed on life support to assist his heart in pumping blood throughout his body. After about a week, Rick was awake and was able to answer basic yes/no questions with his head. He was removed from one of the main life support machines and appeared to be doing well for a few days. Sadly, upon removal of another machine, Rick went into cardiac arrest and coded during the surgery to remove the device. After CPR, he was revived and remained in the intensive heart machine.

About ten or so years ago, Rick had a heart attack after having several days of chest pain. He had emergency surgery then and also had a similar situation where he coded several times and required CPR to revive him. After he healed from that attack, he made changes to his lifestyle that helped get him back to his active life. He retired from his banking job and decided to work part-time at a local establishment in their accounting department, which he thoroughly enjoyed. When Roslynn was born, Rick graciously took on the job as “Pappy” and our childcare provider. We had looked into daycare options, but we quickly realized that wouldn’t be a possibility with costs and lack of availability. For the first year or so, Rick watched Roslynn three days a week, and Derek’s sister watched her the other two days. When Derek’s sister passed away after a lengthy battle with cancer, Rick volunteered to take Roslynn on full-time AND offered to take Greyson as well, once he was born. We never expected him to become their sole caregiver while Derek and I worked 40-50 hours a week, but he did so without any complaints. Rick knew from the day Roslynn was born, that he was brought back from his heart attack years ago, so he could be a substantial person in our children’s lives. He often said that he saw the light at the end of the tunnel, but someone kept telling him he was still needed here on Earth for bigger things. I truly believe that Rick’s best accomplishment in life, was being a Pappy to our babies. Our children grew up with first one-on-one care and support and he did a hell of a job, for a man who never had biological children of his own.

After about six weeks on life support, Rick passed away in the early morning of October 16th. Derek and his mom spent a significant amount of time with him the day before his passing, and “Grammy” was able to show Rick the kids’ school photos from this year. Like my mother’s passing last year, our hearts are significantly more empty. Losing two grandparents back-to-back has been very difficult for us, but even more so for our children. The one thing about Autism and Greyson’s condition that breaks my heart, is that I truly don’t know if he will remember his Nana or Pappy. Will he know that they are gone? He sees their pictures and we believe he knows, but clearly he doesn’t understand the concept of loss. Even more terrifying, will he remember Derek or I once we are gone? Things that parents/caregivers of a neurotypical child don’t necessarily have to think about. Will we be remembered by our child once we are gone?

Much of my life was void of death and loss. Until 2017, I did not experience death of family members or many people close to me. I can’t imagine having to go through these losses at age 7 and 8 like Roslynn has. My heart continues to break for the kids, Derek and especially his mom Kathy, who has been a rock to lean on throughout this entire situation. The strength and courage she has had to endure has really be inspiring, despite her own struggles and grief. We will forever remember Rick and all that he has done for us, and we will cherish the remaining years we have left with the rest of our family members.

Moving away from the sadness and onto more life updates, Roslynn enjoyed her summer camp this year immensely! She had a blast making new friends and seeing some familiar faces from school and camp last year. She looks forward to doing camp again next summer and we plan on sending her for another round of swim lessons come spring. She has begun her tap class at a local studio in our town, and is really enjoying the class. She thinks tap is very difficult and sometimes wishes she chose a different style of dance, but she has been picking up tap very quickly and she’s making friends while she’s there. In mid-September, Roslynn began complaining of toe pain, so severe that she was having difficulty walking. After a Monday night trip to the orthopedic ER in the city, Roslynn’s x-rays were clear and it turns out that she’s just extremely flat-footed. Because her feet as so flat, she’s putting excess weight on the balls of her feet, causing toe pain. We invested in some nice gel orthotic inserts for her shoes, and it seems to be helping her a lot.

In early October, Roslynn and I had the fun experience of staying overnight at our large local hospital for Roz’s tonsillectomy. Because Derek stayed with Greyson at CHOP earlier in September for his several-day EEG, I took on the overnight trip so Derek could work. Roz did wonderfully! I was shocked to see how quickly she bounced back and was even able to keep her voice throughout it all. I lost my voice for a few days when I had mine out at age 15, so I thought maybe Roslynn would too. She enjoyed the one-on-one time with me and all of the attention she was getting from the nurses and child-life team on the pediatric floor. We had one particular child-life staff who was absolutely fantastic. She was so great with Roslynn and really gave her the 5 star treatment in my opinion. By the end, I felt like the staff really treated Roslynn with a lot of care and support, without being overbearing. I would totally go back to LGH’s pediatric floor again if needed, especially if Greyson was to need any care there.

The length of this post is quite long, so I will wrap it up with a quick quote and some photos from our fall family fun we have been having thus far. I have a lot of updates to explain about Greyson, his current school situation and our battle with the school regarding his education and individualized education plan (IEP), which I promise to follow up with another post before the end of the calendar year.

Grief never ends, but it changes. It is a passage, not a place to stay. Grief is not a sign of weakness, nor a lack of faith. It is the price we pay for loving someone or something.

-Unknown