Now, in our home, one of us leaving takes days of strategic planning. We can’t just load up the kids to run to Target to grab milk or toothpaste on our own. So, whenever I leave, I try my best to think though every need Justin could possibly have when I am gone and plan for days, run to the store, do laundry, plan meals, and get childcare. However, I forgot to plan for myself to be home.
Everything started to unravel about 30 minutes after he left.
Once a month on Fridays, a wonderful group of people at Agape Church in Waukegan hosts a respite night for Jayden and Brooklyn (and others). So, the first weekend challenge was to load up all 3 kids, go to Wendy’s and feed them in the car, and get them in the building without running off. But before all that, I needed to brush my teeth. And then it happened.
He took the toothpaste.
Now, I am an avid Amazon bulk shopper, and I should have had a tube hidden in my stash but I didn’t. I was a bit annoyed, but I was trying not to bother Jut so I grabbed some kiddie bubble gum paste and a kid to load up in the van, only to find all the seats in the van removed. Justin never thought to check the van because he was in a hurry to catch the bus himself, so I frantically put the van back together, “brushed” my teeth, and loaded up the kids. I am disappointed to say, I didn’t even last 1 hour before I texted a nasty text about the toothpaste and van. Augh.
So off I went to Wendy’s. I fed all 3 while sitting in the parking lot with them strapped in and me on the floor trying to not be kicked by Jayden. I then changed their clothes and diapers, arriving at Agape only 5 minutes late. After, Ellie and I had a nice time running to Target for toothpaste and milk, and Marshalls to get a phone charger (cause my phone died en route to Target).
I got them home, in bed, and had a great night of sleep (which is rare in our house). But, my success was short-lived.
Saturday morning, it all fell apart. Ellie has been teething and this means trouble. She whines, cries, doesn’t eat, wants to be held, and is generally unpleasant. [I think my ears were bleeding by the end of the day.] Jayden was “manic”. To us, this means he is a ball of energy, laughing, running, destroying, loud and difficult to control. And Brooklyn was naughty. Plain and simple. She gets in moods like any kid where she is just difficult. She was pulling hair, hitting, throwing things, and just naughty. This set the stage for what was to come....a costume birthday party for cousin Lucy.
Lucy was born 4 years ago, during the height of our diagnosis days. Actually, during the weeks between finding out Jayden had MPS and Brooklyn’s diagnosis. I remember sitting outside the birthing area, waiting to see Lucy, while on the phone with a woman from the National MPS society. Scripture says, “rejoice with those who rejoice, and mourn with those who mourn”, so as Rian wept for us, we celebrated with her. Needless to say, the days surrounding her birthday were difficult. We all secretly wrestled with why God chose Jayden and Brooklyn to have a terminal illness, and Lucy to be perfectly healthy.
Birthday parties, I have come to realize, is a huge trigger for me emotionally. For a number of reasons, I want to avoid other kid’s birthday parties like the plague. I desperately try to not be selfish, and look at all the positives, but I can’t help it, they are just devastating to me. My “birthday breakdowns” have happened a number of times since our diagnosis, but it wasn’t until Saturday that I have been able to pin point the feelings of why they are so difficult.
Please understand, it has nothing to do with the child having the party. Whether they are friends or family, we rejoice that our loved ones get to celebrate their child turning another year older. We are blessed that our children were included in the invitation. We are thrilled to be doing life with people that love us and don’t want us excluded. We are blessed to love all these children. But that doesn’t stop the emotions from overwhelming me.
My “birthday breakdowns” evoke emotions, that when put to words, bring me to tears. Birthday parties are like funerals for me. They remind me my children are different. They remind me I am waiting for my children to die, and with every year that passes, they are getting closer to death. They really don’t have friends. The kids naturally gravitate towards other children, leaving me (or Justin) playing with Jayden or Brooklyn alone. When all the other parents are holding their beverages, chatting and laughing, Justin and I are in the bounce house, going down a slide, or in the corner trying to wrangle our children. Our friends and family get it, and try their best to include us, but their extended friends and family....look at us with pity. We are commonly introduced as, “you know....the parents of the kids I told you about” followed by a sympathetic sigh and look of pity. Sometimes, it is followed by a, “you are so strong, I don’t know how you do it...” or a sweet hello to our children. All the while I am thinking, “if you only knew how broken I feel...”
I feel so alone in those moments. No one gets this but Justin. And this day, he wasn’t there.
As I am feeding my seven year old, their children are off playing. While they are chatting, I am changing diapers. While the other kids laugh and play with each other, mine are left out. The only time they are engaged is when a child gets “encouraged” to include Jayden or Brooklyn. None of this is wrong, I am just jealous.
I want what everyone else has and I hate that. I love my children to death, but I am ashamed to say that I am embarrassed of their behavior at times. I want them to have friendships that are genuine and not forced. The older Jayden gets, the less parties we get invited to. He just doesn’t fit in. He can’t just be “dropped off”. He can’t relate. It just marks how far away he is from a typical second grader.
Birthday parties force me to acknowledge the truth. I don’t have to see him being stared at, made fun of, or ignored anywhere else. We control our environment to protect our hearts. He is only around his same age peers at church, and I go to service so I don’t have to see it. I don’t have to hurt if I don’t look.
Back to Lucy’s 4th birthday party. Heading into the party I was stressed. And, my fears were all realized as the painful minutes ticked by. And then it happened. I left. About 30 minutes into a party, it becomes too much for me to handle. When Jut is there, he silently talks me though it, and gives me the eye to suck it up for the sake of our friends or family, and I can slap on a fake smile and small talk for an hour or two. Without him, I run. Fast and frantic. "I need to get out before I breakdown", I think, and run I did. I got all the kids in the car and peeled out of the driveway....not saying good-bye in fear of breaking down.
How selfish. I know. I cried all the way home and the rest of the night. I am crying now. It is the one area I just can’t quite work though. It hurts me to my core to acknowledge these truths.
How selfish. I know. I cried all the way home and the rest of the night. I am crying now. It is the one area I just can’t quite work though. It hurts me to my core to acknowledge these truths.
I love my friends and family, they continue to try and include my kids. I know they love us and are teaching their kids to do the same. I guess I wish they didn’t have to. I wish it wasn’t us sometimes. Somedays, I wish Jayden and Brooklyn just fit in. Our friends and family continue to invite us, and we continue to go. The worst thing would be to not get invited. So even though we grieve, we celebrate being included in the lives of their children.
One of the things that killed me was Brooklyn. She cried so bad when we were leaving because she so desperately wanted to stay. She doesn’t see the world as I see it, and for that, I am thankful. She loves her cousin, Lucy, and Jayden enjoyed being in the bounce house, too. I know this is my stuff, and I just need to get through it. I know I could cry, be messy, ask for help, express my feelings at any birthday party to any friend, and they would listen and support us. But, I never want it to be about me...so I feel trapped.
I am taking an online course through Joni and Friends, called Beyond Suffering, and one article reminded me of my experience. Dr. Baker says, “the action of confessing the truth out loud changes us. When we take the convictions of our heart and speak them out loud something is transformed in us. Just as confessing the truth in our hearts about the Lordship of Jesus connects us to God spiritually, so, too, confessing the truth in our hearts about our deepest feeling connects us to God and others emotionally. Then we are no longer alone in our pain.”
