Marriage and a special needs diagnosis.
James and I are basically still newlyweds… okay maybe not quite but we are pretty new to this. Timothy was born exactly 1 week after our first wedding anniversary. So at this point we are almost two years into marriage.
When you first get married there are these ideals you have and plans for how you think your future might play out. But you know what they say “life is what happens when you’re busy making other plans”.
I thought we were probably more prepared than most for the curveballs of life based on what we went through before getting married (losing a sibling, antenatal depression, high risk pregnancy, blended family, etc). We had a pretty colorful year of being engaged. But yet I still found myself naively creating these plans and ideals for our life together thinking after we said “I do” all those other problems of life would just cease to exist.
We had agreed that three children was probably going to be it for us baby wise (we already had two when we got married) so after Timothy was born everything seemed set.
I remember sitting in the NICU with Timothy thinking I was one of the lucky ones. I got pregnant quickly into trying and had two other healthy kids at home. I was blessed with three healthy beautiful kids. I also remember a feeling of worry wash over me in that moment.
In a way I felt like having three healthy kids was too good to be true. Life just doesn’t work out that way. I remember when all of this started with Timothy thinking “Yup too good to be true”. After a lot of grieving and processing with Timothy’s diagnosis I can now say I still have three healthy beautiful kids, one is just showing me the world in a completely different way. But back to the beginning of our journey…
The start of all of Timothy’s troubles (read Timothy’s Story) came at a time I was in the thick of postpartum depression and anxiety. Now you might be thinking what does any of this have to do with marriage and I can promise you it has a lot to do with it.
James and I handle stress completely differently. James also doesn’t have anxiety or really understand it (he is trying though!).
So when I came home from the ophthalmologist and said he thinks Timothy has Leber Congenital Amaurosis (see Timothy and CRB1) and he is blind, James said “Well that sucks but he will be okay”. Now at that moment I can tell you I was anything but okay and I wasn’t sure how it would just “be okay”.
Throughout this journey and all the appointments and tests James has pretty much remained the same, he does not stress about them because it doesn’t change anything. But for myself I can feel my anxiety creep up weeks before the appointments and I do stress about how they will go, how Timothy will handle the appointment, will I remember to ask all my questions. The stress I have for these appointments is endless. Not to mention the massive wait times to see specialists or get test results, weeks and sometimes months of waiting doesn’t help my anxiety.
Even though I can recognize that we have these differences it has definitely caused some conflict in our marriage. I remember a couple weeks after the initial “diagnosis” sitting on the couch crying basically begging James to be sad with me. I wanted him to cry with me that Timothy won’t see a flower or a sunset or a waterfall. He wanted me to think of how he will smell the flowers, feel the warm sun and the mist from the waterfall. We just were not on the same page.
It made me mad. Mad that he wasn’t sad about it, accusations of not even caring about Timothy’s condition were definitely thrown out (Sorry James). And also mad that he was handling it, he was okay, he accepted it and could look at the bright side. I was struggling with that.
I also made him mad. If he were to name the top thing he dislikes about me I can guarantee you it will be how I hold onto things because I do. He wanted me to think of the positives and move forward. And I wanted that too I just didn’t know how.
Well eventually (not too long after) I moved forward and started placing more focus on the good and less focus on the things Timothy wouldn’t experience. And eventually James broke down and was sad about it for awhile. Life is funny that way.
We learned a lot about each other in these past 10 months since having Timothy, and even more since getting his diagnosis. We have really had to work on our communication and understanding (which is not an easy job). Timothy’s diagnosis was hard and now being parents of a special needs child is even harder.
I titled this post for better or for worse because it is usually said in wedding vows. But I think it’s hard to understand the meaning of these vows until you are married. We have definitely felt some “for worse” moments these past 10 months. And we also feel like we have learned a lot about the effort marriage requires and grown stronger together because of fighting through those moments.
So for any new special needs parents (or ones who are struggling) I hope that you can find a way through the “for worse” moments because there will definitely be “for better” moments too.