For Better or For Worse

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”.

Melissa and James at their wedding kissing at the alter.
I do.

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…

Hailey, Charlotte, and Timothy. Hailey is holding brand new Timothy. Charlotte is sitting beside them.
Meeting their new brother.

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.  

James and Melissa (holding Timothy) smiling.
Road trips

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.

Melissa and James at their wedding walking up the aisle after getting married holding hands.
In this together.

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.

The Year of Acceptance

Every New Year’s Eve brings on a feeling of anticipation for the future and a hope for a better year ahead. People usually spend the week leading up to the New Year thinking of all the things they can change in their lives, including but not limited to their bodies, minds, jobs, family situations, financial situations, etc. Since we entered a new decade this year it seems that the wish for change was amplified. I found a lot of the resolutions I was reading to be inspiring and for a minute I let my mind think of all the things I would like to see change for my life in the New Year but then I decided to have a different goal for 2020. So instead of my wishes for what I can change this year, I will tell you my wishes for what I can learn to fully accept this year.  

This year I hope to accept my body and all the changes that came with having three children, I hope to not worry about the number on the tag of my jeans, or the scale. This year I hope to accept that relationships change over time. I hope to accept these changes as they come and try to remember my number one focus is to build and nourish healthy and caring relationships and not to hold on to ones that are no longer serving my intended family in a good way.  

This year I hope to accept dirty looks, stupid questions, and inaccessibility. That one might sound weird but it is true. I hope that the dirty looks I get from strangers do not have me feeling down all afternoon, I hope that I can answer the stupid questions with compassion (at least they are trying to learn), and I hope I can acknowledge that the lack of accessibility is really just a lack of knowledge and information not a personal attack towards people with disabilities (including my son).  And the most important thing I want to accept this year is Timothy having Leber Congenital Amaurosis CRB1.

Now this one I have already put quite a bit of work into before having an official diagnosis but since getting one it seems the conversations around me have changed. A lot of focus is put onto if there is a treatment (there is not) and if there will be a treatment in his lifetime (no one could answer this one). This year I hope to accept CRB1 for what it is currently (a lifelong condition). This does not mean I have given up hope for a treatment or that I will not continue to stay up to date on what is going on in the world of LCA research. What it does mean is that I am okay if Timothy remains blind for the entirety of his life. This year my goal is to really accept this condition and place more focus on Timothy and who he is  growing up to be and being blind is a part of that. Timothy was born this way and how he interacts with the world around him including with me is all partly shaped by him being blind. I have people every day telling me that they hope for a cure or a treatment to “fix” Timothy, and I have come to the conclusion that he is not broken and therefore is not in need of being fixed.  LCA might have taken Timothy’s vision, but it will not take away his ability to succeed, feel loved, experience joy, or anything else he desires out of life. This year I hope to feel overwhelmed by acceptance for my life and for my family how they are because I have so much to be grateful for and I do not want to waste another year worried about changing things to be “better” and missing out on all the beautiful things I already have.

Timothy laying on the couch with his soother holding a stuffed kangaroo
Timothy and his Kangaroo

Wishing everyone a Happy and Peaceful 2020.

Home for the Holidays

Boundaries and Learning to say “No” at Christmas

Full disclosure, I have been stressing about Christmas since we learned that Timothy is blind (in August). This time of year is always so busy and there is a sense of obligation to spend time with everyone you know during the holiday season. Unfortunately I am a people pleaser and that sense of obligation usually has me backing down on any boundaries I set for myself during Christmas time but this year is going to be different.

Brown haired 6 year old girl in a pony tail and glasses smiling in front of the Christmas tree.
‘Tis the season.

Since Timothy is blind it is quite easy for him to get over stimulated and scared. Mom and Dad are really the only people he knows and being in an unfamiliar space with tons of voices he doesn’t recognize and people constantly touching him is not fun for him.  To be honest it is not fun for me either as I am constantly worried about how he is feeling, and dealing with him crying every time there is a new noise or a new person trying to hold him.

Aside from the fact those things are not fun, they are also not fair. Why should Timothy have to spend his first Christmas stressed out and uncomfortable? When it gets to the point of over-stimulation he can be inconsolable and the effects usually result in a cranky baby for a few days.  We have been in this position a few times over the past four months and I always regret not standing up for my family’s needs.

If there is anything I have learned about raising a special needs child it’s that I need to be his biggest advocate.  So when it comes to Christmas this year James and I came up with some guidelines for our family. I have decided to share these on here for other parents either with a special needs child or not (all families need boundaries) in hopes that others can see it is okay to say no in the best interest of your family (even to old traditions).

Curly brown haired two year old girl placing a green Christmas ornament on the Christmas tree.
Christmas Tree Decorating

These are the four guidelines we decided upon to help us get through the holidays:

  1. We are not going out of town: This is probably the biggest decision we made to cut down on holiday stress. Last road trip we went on Charlotte and Timothy each cried and screamed half the way home. Aside from the fact that young kids don’t want to spend half their day sitting in a car seat, we live in Canada where the weather is unpredictable and the roads are not always safe.
  2. We are not over committing ourselves: We definitely have made some fun holiday plans with family and are super excited for the kids to experience Christmas with their cousins. As much as we have a lot of Christmas events we would like to enjoy, we didn’t pack our entire break with plans so that we make sure to have some quiet family time and give Timothy (and the girls) a chance to relax at home between commitments.
  3. We aren’t spending tons of money: This is something we have done the past couple years but it’s important to bring up. We do not go crazy on gifts, actually we generally only buy for the children in our family (our own and our nieces). We usually go with a nice Christmas card and some updated kid photos for grandparents, great grandparents, and aunts and uncles. The first year we did this it was out of necessity and we had some comments from an extended family member on it (which did not feel good). Now that we are in a better spot I almost wavered on this plan but we decided our budget and savings plan is more important to our family’s future, as the children want to do more activities now and with all the upcoming costs for specialized items for Timothy. Christmas is not supposed to be about gifts anyway and I much prefer the time spent and memories made than an item that will be forgotten about quickly.
  4. We are advocating for our intended family’s needs: This one can be a hard one especially for families that are just starting out. When you get married and have children it can be hard to detach from your family of origin to make your own traditions and plans. Sometimes you decide to still partake in certain traditions all together and other times you don’t. For us, we are planning to be a part of several events with extended family over the holidays but only when it is in the best interest of our intended family. If someone in the family is sick, overwhelmed, or too tired we might cancel or leave an event early.  If someone we have plans with is unwell, we might reschedule to protect our children’s health. This year we are trying to make sure we do things that work for our family and that might mean keeping the kids close to their schedules for bedtime, and saying no if Timothy is overwhelmed and doesn’t want to be held by someone other than us.

These four guidelines we have set are not intended to make anyone frustrated or unhappy with us but instead are boundaries we created in order to have a fun and fulfilling Christmas. It is always okay to speak up for your needs and your family’s needs.

Lit up Christmas tree with a silhouette of a dad holding his infant baby boy in front.
Timothy’s First Christmas.

As always thank you to everyone who reads my posts I have loved making so many new connections and I hope you all have a Happy Holidays!

Happiness is Blind

This is going to be my first real blog post and I couldn’t be more nervous. When I was thinking of starting this page there was always something that would hold me back from diving in. At first it was the thought of people reading personal details about my life (PS – Mom I would really appreciate it if you never read the marriage section) but I quickly got over that. Anyone who knows me would probably say I am an over-sharer anyway.

In the end the biggest reason it took me months to finally decide to jump in the blog pool was creating a name.

I always knew I wanted the name to incorporate the main reason I wanted to publicly share our journey. My son Timothy, who was born blind. Which you can read more about on this blog post:

https://happinessisblind.com/2019/11/18/timothys-story

What I didn’t know was how to incorporate it in a way that is positive. Finding out your child is blind comes with many feelings and I plan to address the good, the bad, and the ugly crying that came with it but the main focus of this blog and our everyday life with our family is the amazing world view you begin to have when you are not focused on how things look.

Thank-you for joining me and my family on this journey.