Wow 2016. You made it reeeeeealllllly hard to like you. Like real hard. You took a cue from the end of 2015 when we received Graham’s Fragile X diagnosis and you kept the hits on coming. We were only 4 days in, just getting to know you, and you delivered the hardest news we’ve ever gotten: Reid had also tested positive for Fragile X. It wasn’t harder because our hearts weren’t equally broken for both of our boys. It was harder because we now knew that they were both affected. This kind of a diagnosis isn’t something you even worry about because it’s so much worse (at least initially) than anything you have ever known or could imagine. And even if you worried something terrible might happen to one of your children, you certainly would never expect it to happen to both of them. Things like that just don’t happen to us…until they did.
I don’t know how we got through the first few months, but we did. The gray sadness of winter seemed the fitting backdrop for how we were feeling. We cried, we held each other close and we endured. We decided that it would be best for our family if I quit my job to stay home fulltime with the boys. My last day would be Friday, April 15, 2016. I went to work on Friday and Monday I was a stay-at-home mom. Talk about an adjustment. I have to admit, at first I wasn’t sure if I would be any good at this new gig. Being a stay-at-home mom to two special needs toddlers is certainly not for the faint of heart. But the days turned into weeks and the weeks turned into months and we got used to our new routine. Just as we began hitting our stride, we received another blow. My father, a 6 year non-operable pancreatic cancer survivor, was told by his incredible team of oncologists that there was nothing more that they could do to keep him alive. Despite his diagnosis and slow decline, this news came as a shock due to how well and long he had fought and how many times he dodged this bullet. Unfortunately, dad’s illness finally took its toll and he was taken from us on November 25, 2016, just 5 days after his 68th birthday.
So yeah, we weren’t too sad to see 2016 come and go. Although I would be remiss if I did not acknowledge the one good thing that did come out of 2016 for us. And that is the formulation of the Pierce Family Fragile X Foundation and the amazing support system that has developed as a result. As we come up on the one year anniversary of our launch, I’ve been ruminating on what this past year has taught me. We’ve learned, we’ve persisted, we’ve grown, we’ve loved.
1. Life isn't fair. And, for some people, life really really isn't fair. Pretty much every facet of our lives is affected by Fragile X. And everything is sort of, well, hard. I say this not for pity but for the realization that families with disabled or sick children have incredible burdens on their shoulders. On top of trying to do the typical parent stuff, like plan birthday parties and participate in school activities, we also have to coordinate multitudes of doctor appointments, therapy sessions, applications for various support programs…the list goes on and on.
2. I still have so many worries, one of which is will either of my boys will be able to talk someday. The waiting and wondering is unimaginably painful. Expressive language is such an important part of interacting with others in order to meet even your basic needs. And thinking about my boys knowing that they want to tell me something but are unable to is one of the worst feelings I can imagine. Even if males with Fragile X do learn to talk, it is not typically at an adult level. And I worry that they'll never really be able to tell me what they are thinking and feeling. When Graham was sick a few weeks ago with strep throat, I thought to myself "it will be easier when he's older and can tell me that something hurts." But then I caught myself. Will he be able to tell me something hurts? That will require both the ability to determine that something hurts and then the ability to articulate that something hurts. And then my mind wandered to the bad place of thinking about when I'm not here to anticipate his needs. I am his voice. What happens when I'm not here? Who will worry about him? Who will be that voice?
3. Just because we don’t talk about it…doesn’t mean we’re doing okay and we’ve moved on. I was talking to my best friend a few months ago and she was asking me how I was doing. I said I feel like I’ve said everything that there is to say and I don’t want to sound like a broken record to my loved ones so I just don’t talk about it anymore. Don’t bring up the sadness, the worry, the struggles. But it’s still there. It’s there every single day. And the ones who really get it still ask and still want to listen.
4. People who say “everything happens for a reason” and “God only gives us what we can handle” have never actually had something really bad happen to them. I get why people say these things…they’re trying to make sense of something that doesn’t make any sense. Heck, I’ve probably even said these things to people before! But I’ll never say them again because they aren’t true. I don’t believe that this happened to my perfectly innocent and loving boys for any special reason or to teach us all some grand lesson. It just happened and we’re dealing with it the best we can.
5. It has become very difficult to empathize with people about regular problems. I want my friends to be comfortable coming to me to talk about the things we used to talk about before the boys were diagnosed. Before they were diagnosed, I'm sure I would have agreed that a typical issue with behavior at school or trying to juggle busy sports schedules was a challenge. But if I'm honest, I have to stop myself from saying that these things are temporary and they really aren't problems at all. Unfortunately, my definition of a problem has been redefined. I long for the days when these typical concerns were all that I had to worry about. But now those regular, every day issues pale in comparison to the things that worry me. I'm not the same person I used to be. And that is hard to acknowledge. I have to stop myself from saying, "Oh that's too bad your child has so many activities! We're worried that our kids will never play sports or even have friends! I would kill for your problems!", because I know it's not fair and that all things are relative. But sometimes it's difficult to muster.
6. People will surprise you. Both with their generosity as well as a lack thereof. Of course there will always be those people who you expect support from and you don’t get it. And, boy, is it disappointing and hurtful. But what we like to focus on are the positive surprises, like an old acquaintance sending a donation with a nice note of encouragement or a friend offering to help at a fundraiser. We have been absolutely humbled by the generosity of our community and it really fuels us to keep going. Having the support of our family, friends, neighbors, co-workers and community as a whole has truly been a blessing.
7. The tenets of Option B, the new book by Sheryl Sandberg, really ring true for people who are grieving. I consider myself to be a person who is actively navigating the grieving process. Even admitting that is helpful. I've read many articles about it and the pieces that really resonate are:
a. Just show up for people who are grieving. Don't ask how to help and wait for them to tell you. Just show up and help. Come visit, bring coffee, take the kids out for a bit, etc. Don't wait for the grieving person to ask because they won’t.
b. It's ok to admit that you are not 100% ok and that you are still grieving. You don't always have to put on the happy face.
c. We didn't choose Option B, but since that is what we're faced with, let's give Option B hell.
The last one deserves a pause. We don't have to be happy that we are faced with Option B, but let's pick ourselves up and make the most of it. Because we only have this one life and our kids deserve the best that this life has to offer.
One of these days I'm going to read this book. One day when I'm not trying to potty train a non-verbal child, when I'm not buried in endless paperwork for disability services or not running from appointment to appointment, I’m going to read it cover to cover. Who knows when that will be but it will happen!
8. We’ve emerged from the depths of despair. I’m not going to sit here and tell you that we are happy about the cards we’ve been dealt. We still have worries, we still cry, we still have anger. But that feeling of complete and utter despair, that feeling of pure pain in our hearts and that feeling that nothing is worth living for and we might as well drive our car off a bridge - is gone.
9. Everyone deals with adversity differently. For me, I have found it helpful to throw myself into being the best advocate for my boys that I can be. I feel that it is my job to fight for them and make sure they have access to all of the therapy and services that are available and that they will benefit from. I was not looking to play this role in my life but, since these are the cards I have been dealt, I am taking my job very seriously. The biggest compliment that I have received from people is when they tell me that they admire how I advocate for my kids. I will go to the ends of the earth for these boys and I want them to live their best lives. I have learned the hard way that there is no roadmap for navigating the special needs world. You have to ask questions, network with other families, do your research and stay focused.
10. I have also learned that having balance is important. Balance for the boys – I keep them on a tight therapy schedule but I try to leave time for them to have fun and just be kids. I get sad when I think about how even on school vacations, they both have the same jam-packed schedules that they always do. They work so incredibly hard and don’t get to have the care-free downtime that a lot of kids their age do. They have to work that much harder for everything. I also think it’s important to try to have balance for myself. It’s still a work-in-progress but I try to remind myself that I am a person too and if I don’t take care of myself then I can’t properly take care of them.
11. Lately, I try not to take myself or life too seriously. I try to remind myself that this life of ours is a journey and that, although it’s not always easy, it really is sweet.
12. When the boys were first diagnosed, it was very difficult to be thankful for anything in my life. In my mind, it had all gone to hell and there was no coming back from it. But over time, I have discovered that gratitude truly is the best medicine. I read this quote once and it really resonated with me:
“It is not joy that makes us grateful, it is gratitude that makes us joyful”
I have found that acknowledging that my life isn’t necessarily what I expected BUT there is a lot about it that is so wonderful is really freeing. Feeling sorry for myself wasn’t helping but feeling grateful for what I did have was helpful. Every night before I go to bed, I try to think of 3 things that I am grateful for in that day. They can be big or small, silly or serious, but I can always think of at least 3 things. Tonight I am grateful for 1) Graham peeing on the potty for the first time 2) Reid independently signing “more crackers” for his therapist and 3) Jose Cuervo premixed mango margaritas J
13. We have been so lucky to have such an amazing support system of family and friends. I know that the boys have so many people who truly care about them and want nothing but the best for them. We also have many trusted caretakers who I would not hesitate to leave the boys with, whether it be to run one of the boys to a therapy appointment or a to go out for a much needed date night. I can’t stress enough how important that is for us. It can be so difficult to find people to help with special needs children and I know that I have so many people that I can count on. I try to thank them as much as humanly possible but it never seems to be enough. They have provided us with a port in this storm and I will be forever grateful to them for that. We can’t do it alone – it takes a village. It takes a village to care for our boys, it takes a village to support our foundation and it takes a village to find a cure.