One of the most difficult things while we were away was being separated from Jay and his Girls. Many FaceTime calls were filled with tear on how much we missed each other. We had plans for the girls and Jay to drive down for the March Break thinking we would still be in Memphis for another month if the trial was working. Unfortunately the trial was not working and we are home now, although even if that still was the plan Jay was unable to get Travel convent forms signed from the other party. March break time was something that was worked out months ago in exchange for time that was received for the girls to go on a trip with their mother to Flordia in February.
Now we are finally safe and sound at home and excited once again for our blended family to be together, thinking that the timing was actually perfect on coming home as this was already our scheduled week and Aiden is feeling quite well with the steroid working. Unfortunately, such as my life nothing is easy and now we are hearing excuses the girls can not visit because we have been exposed to the corona virus. As soon as I heard this was the reasoning I reached out to Aiden’s Doctor and got a note:
“At my visit earlier today we discussed visitors to your home while you are in isolation. You are to minimize visitors, but under current guidance, it is understood that families with end of life situations that family members and loved ones are permitted to visit. We also discussed the importance to above all maintain good hand washing with lots of soap. We are both aware, that the current incidence of COVID19 in Tennessee is very similar to Ontario and that both you and Aiden have not been in contact with anyone known to have COVID19 and neither you nor Aiden have any signs or symptoms that are associated with COVID19. “ from the Roger Neilson House Doctor
Unfortunately, I guess the word of a doctor means nothing and now the request is that this letter needs to be sent to lawyer and also the girls family doctor which could be days. In talking to the doctor over the phone I was also told that children are not even at risk for the disease and by the time they were returned after the March Break they would be out of the gestation period so no risk of bringing the virus back to mothers home. I just wonder when this consistent acts of saying jump and we say how high will stop?
Declan has asked during our stay and since we left Memphis when he was going to see Rowan again. Having all kinds of plans organized for the two this week, Fort building, slumber party, sledding, food challenge, trying to make up for lost time. I had mentioned to Declan last night that sadly the visit may not happen. My heart broke with his response “Why do the girls mom hate us so much?” “I don’t know, you have done nothing wrong Declan don’t worry” I replied sadder that with all the stress and loss he is feeling right now he now also feels that there is something wrong with us and this situation.
Aiden on the other hand was excited to just be normal and hang out with Delilah chatting, watch movies, play games in bed. One email I received from Delilah while we were away was so heartbreaking to me:
“Oh hunny I don’t want you to miss us! I don’t want you to be sad! be hopeful and happy that this is a possible cure for Aiden. It is kinda exciting in a way or that’s how you can try to look at it. Only a handful of kids get picked from around the world to come to this amazing hospital and try treatments that are not available to other kids right now. Aiden being in this trial could save 100’s of kids with cancer in the future which is pretty amazing. Try to look at the positives. This is something you guys are very much apart of. You have seen Aiden at his best and worst, You have brought out the best in Aiden so many times which is unbelievable special and not everyone can do.
I know it is hard. I miss you guys like crazy too. It was really hard sitting in this stupid room all day knowing all our family was celebrating together for your birthday and we could not be there but it also made me happy knowing that you guys were all together and having fun because that’s what life is about and that’s why I have now left “my life” twice to take care of Aiden so that we can be apart of those fun activities with everyone. What you can do for us while we are here is just be happy and free and enjoy life! You are very much like you dad in sooooo many ways! He too was soooo very sad last week. I miss making you guys laugh at me but all we can do is just make the best of it! It is not forever it is just another “adventure” , sometimes I pretend I am just living in a movie and this is not my real life because it really is so strange and Unreal sometimes. I can guarantee you though that before you know it we will be back or you guys will come up here and visit. And then summer will be here and we will be finding random places to swim again!
And I am not going to lie, I really like the FaceTime and the pen pal it is kinda fun and different. Last time I was away with Aiden I felt all by myself a lot of the time but now I have all these amazing little ladies and an amazing man in my life that make it not so bad!
Like I said you are part of an elite club now and with that comes great responsibility lol to be free and happy and be a kid! Do not worry, do not be sad there is enough sadness in these hospital walls with so many parents fighting for the kids lives that I just want to see you girls and lynkon and your dad happy and healthy while we are way!
And that spot in bed is still mine!!! And Aiden on one side and you on other when we get back and we will binge watch vampire diaries and eat candy all night when we get back!!! You might have to fight Aiden for the chocolate
This is so hard, knowing what the right thing to say to our children is in these types of situations let alone trying to navigate around a very high conflict separation and not let ourselves get swept into the viscous cycle because then we are no better.
I really am just at a total loss though. I even tried reaching out to the mother for the first time in almost 2 years while we were away and before we knew the plans to come home:
From: Stephanie Verk <email@example.com>
Subject: Itinerary and Travel Plans and Reach Out
Date: March 6, 2020 at 11:49:25 AM CST
I am writing to you as a fellow Mother in hopes that you can for one minute put yourself in my shoes and do the right thing. Time is such a gift that unfortunately people take for granted all too often.
As you are well aware my oldest son is terminally ill. Imaging how you would feel if a doctor told you Delilah only had months to live. Whether you like it or not your girls have a very good relationship with my boys. This is not something that you can control and the more you do the more it will backfire on you. As your kids grow up they will see the truth of their parents based on actions they have seen. My parents separated when I was 18 and it forever changed my mother and my relationship. I saw her pour bleach on my dads clothes, call the cops on him and just manipulate my brother and me over and over again trying to get us to choose her over my Dad. Unfortunately it backfired and it drew me closer and closer to my Dad as he was just stable and I realized what my mother was doing was not something a good person does and it was not something I wanted to be around. It breaks my heart to this day the estrangement between my mother and me but the damage was done long ago. I understand now that she was just hurting but not as a child. You have 3 amazing girls and I would hate for them and you to fall into this pattern but based on all the bully and harassment you have put us and your girls through over the last 2 years I am very fearful that this is the path.
You do not know me, that is your choice, but like it or not I am a good person and I deeply care about your girls and there is no doubt they feel the same towards me and the boys. There are many times your girls say negative things about you and I reprimand them to their shocked eyes. I tell them not to talk bad about you and tell them you love them very much and are just hurting. I tell them all they time that I am not trying to replace you and never could. I also tell them that things will get better and that is something I really hope for. This constant fighting and control and energy spent on these silly arguments can not feel good for you, think about what that feel is like for a 10, 8 and 5 year old. This bitterness you feel to Jay and I will not take you anywhere good I can assure you.
One of the hardest parts of having to travel for these treatments is leaving behind friends and family. We honestly sit in a room for most days between appointments. I try my hardest to give the kids good memories and adventures and activities whenever I can. I try to teach my kids about compassion and love and understanding. The kids were all very upset when we left to Memphis but we made the promise that we would be able to visit. Delilah specifically upset that “she feels everyone she loves leaves her.” She talked to me onetime when your neighbour passed and how guilty she felt for not going over to say good bye. I told her that as long as she remembers the good memories that is what he would have wanted, not him laying sick in a bed. Aiden is doing surprisingly very well right now and laughing and smiling lots that is how I want to kids to remember him. Not at Christmas when he was in a bed essentially unable to lift his head up and we went to palliative care for what I thought was the end. The truth is Aiden will most likely not make it past 10, another reason for me reaching out to you is to let you be aware that your girls are going to need you through this. They will need help at the loss of not only their friend but someone they have lived with now for a year and considered step-siblings.
The kids have been looking forward to this visit as they talk about it when we FaceTime over the weekends. It is also very good for the kids to see where Aiden is and that he is ok right now (this is something that can change very quickly). I know you do not want to see it but we are a family and you denying them to visit would be like telling Rowan she could not say goodbye to Deliha if the tables where turned. How would you explain that? This trial is very experimental, Aiden has a lot of disease and the truth is we may not all be coming back from Memphis. Why would you not give a dying kid a week with people he loves, people that make him laugh and play and just make him feel like a normal 10 year old boy. When they are all together they are all just kids and they do not see the sickness and it really is beautiful to watch them all interact. Why would you not give your girls the opportunity to see that the world is so much bigger than the protective bubble we try to put them in. To show them what compassion and sacrifice looks like so they grow up appreciating all that they have and all that you as their parent provide for them. They have a loving mother, and family and friends and good school and nice homes, trailers and the ability to go on fun trips with both parents who love them.
Anyways, I have attached a rough itinerary as Jay said you requested. We are allowed 5 at the Ronald Mc Donald House overnight where Aiden, Declan, Lynkon and I are staying. The plan is the girls will stay at a rented condo close by for a couple days then a hotel for the weekend and we will visit back and forth in the day between appointments. This is not Disneyland or some amazing Florida vacation it is honestly a simple trip to show Aiden that life is worth fighting for and he has people around him who love him and want him to live. I really hope you can contribute to this goal by either saying yes and signing the attached travel consent form and giving Jay the passports and then we can book the accommodations or just say no and live with your conscience that you denied a dying child time with his family. You will have to explain to the girls what your reasoning are as I will not be defending you actions this time. And when you go to court for separation to Jay you will also need to explain it to a judge. There is nothing more to discuss, too much money and time has been spent on this already when it really is a simple yes or no.
I guess I live in this nice bubble where I think everyone deep down has a good heart and that me reaching out would be the olive branch that breaks this awful patten we have fallen so deep into but unfortunately I was mistaken. The reply to Jay from my email was that I was mentally unstable due to having a sick child and how dare I harass her like that.
So now I am once again at a lost. I am usually pretty good at making the best out of bad situation but I really have no clue what else to do. Jay just returned from trying to pick his girls up at 9am as per their agreement yet all he saw was his girls sad faces through the window and the cops being called on him. This is what was expected but I told Jay at least your girls saw you tired to make the attempt to see them. I asked Jay last night if he thought she would release the girls for the week if we were not here, which we really do not know the answer but it saddens me to think we are the reason Jay is now loosing a full week with his girls he loves so much because of us.
Aiden is so good right now, the steroids are working, it would be a perfect visit. I hope everyone pauses and realizes how precious a gift time is, it is taken for granted more times then not. Do not wait to run that marathon you dreamed of, or try out for the school play, go on a trip or just simply forgive someone or tell them you love them because next thing you know the chance is gone and you can never get it back. I don’t know how Aiden will be in two weeks or if he will even be here and it just breaks my heart that this is even something we are dealing with right now but more importantly that Aiden and Delilah will not get to watch vampire diary’s in bed with candy and we can be happy and just show all the kids how lucky we are despite cancer. It is these tiny moments that make up life and are to cherished. It are these tiny moments that help in the grieving process as you reflect back on times shared.
Last week, Jay called me from the restaurant he had taken his girl to supper at as Rowan was screaming and crying and yelling “I hate you, I hate you” I FaceTimed Rowan and she ran to the bathroom with the phone to chat and she just looked so incredibly sad. I asked if she missed Declan and she safely nodded her head. I said how sorry I was that she was feeling so sad but her dad and I love her very much and we would see her soon. She gave a small smile and said ok. I told her to take breaths and just stay in the bathroom a little bit to calm down. She again gave small sad smile and said Ok. I then got called from the doctor and had to go it was so sad having to hang up and so sad not being there. Later Jay and I talked about what happens at the restaurant and Jay said after Rowan calmed down she was able to tell him the real reason, it was not that she hated him it was that she just hated everything and did not know what to do! These are big emotions and situation for a little girl to go through heck for anyone to go through and I don’t know what the answer is. Jay and I just try to be stable and consistent and show them love and that is all we can offer our children at this point.
I am not posting this to be vindictive or vindicated I am posting this to be honest and raw as that is what my blog is about. I can tell you for sure I am not the only one who has gone through this, gone through times you feel like the whole world is against you and you are being attacked from every side. It is the true face of what families go through with having a sick child. It is the reality of many separations, as I know so many of my friend are struggling through high conflict co-parent challenges. We have no more energy to fight and my focus needs to be on creating positive energy in my home and for Aiden right now. It is me trying to show how much actions hurt so maybe someone in another situation will stop and think about this story and think about the pain and devastation we are feeling right now and how it affect the children and it will help change future actions. And I am really just sad on so many levels…..
How to Help
I am so incredible grateful for the support we have and continue to receive through our friends, family and community. December 2017 we were given a life expectancy of a couple months. We are now in year three and fighting everyday to beat this awful disease but I have been unable to work in order to care for Aiden and receive no child or spousal support and very limited social service funding. Donations will help with all of the medical, travel, and accommodation expenses that I have incurred over the last three years as well as those expenses that are still coming. Donations will help with daily living expenses and will ensure the boys have great memories together for whatever time we have left.
If you follow Aiden’s Voyage on MamaOutpost please consider making a donation. Any contribution would be greatly appreciated.
Stephanie (aka MamaOutpost)