25 Reasons Our Marriage Survived Prader-Willi Syndrome
written by Jessica Patay
This month, my husband, Chris, and I celebrate 25 years of marriage!
When Ryan was diagnosed with Prader-Willi syndrome at 5 weeks of age, and we read and read (you know the drill), and among other family challenges, we noticed the nasty doom-and-gloom statistics about marriages failing due to the stress of caring for a child with a disability. It made sense but I, or rather, we, were determined to NOT be a statistic.
I want to share 25 reasons we believe that we have survived, and thrived, amidst chronic hardship. This is not a “25 steps to a perfect marriage” post. We are not perfect. We are imperfect, flawed, and carry our own baggage. And through it all, we have remained steadfast and loving and happy together. (Note: These points are succinct and yet all deserve their own blog post. They are not necessarily in order of importance.)
1. We are 100% committed to each other and to our marriage and to our kids. We never wavered in that commitment.
2. We are a team. We make decisions together. We stay united. And when we are not united on a problem or decision, we get counsel. Are we aligned on everything, all the time? No, because we are two different people with different personalities and perspectives.
3. Chris never made me feel that it was MY job to handle Ryan because he went to work each day and I was a Stay-At-Home-Mom
(which I was for many years). He always made me feel he was with me in this altered parenting journey. He has been to every IEP except maybe two or three. I did not ask him for that. He just showed up always. He has always been in the trenches with me. Even though Chris has a very demanding job as an attorney, he has always made it clear that his heart is with me, with us, his family.
4. We have always made time for dates and date nights away. We were unwilling to sacrifice that. We HAD to trust babysitters and behaviorists to make this happen and we were willing to do that.
5. We recognized early on that we could not do this alone. We have always asked for help and used respite services. Help from family or friends and lots of angel babysitters and behaviorists who have come into our lives over the last 18 years.
6. We jumped into support groups and created community from the time Ryan was 2 months old. Probably our fears catapulted us into those spaces, and yet we reaped a huge, supportive network.
7. We have been to therapy, individually and as a couple. Even though we never hit crisis in our marriage, we worked through THE STUFF and did check-ins. Still do. In recent years we have invested in family therapy, which has also contributed to our marriage union and strength.
8. We have always made exercise a priority. We believe in sweating out the stress. And engaging in exercise that truly makes us feel alive and joyful. Hitting physical goals leads to hitting other goals in life. And boy, does that feel GOOD.
9. We share in the same faith. It has bonded us and united us and anchored us. We pray together and encourage each other in our faith journey as well and give each other space and support in our questions, wonderings, and doubts, without judgment. We do believe we are spiritual beings, and this act of praying together brings us closer.
10. We have enjoyed and invested in each other’s friends. Having shared time and experiences with other couples in the Prader-Willi syndrome world or disability community has been invaluable.
11. We fight and we work it out and sometimes we don’t work it out. And we accept each other’s flaws and or differences that lead to disagreements. Although I feel way more flawed than I think Chris is, he is patient and loving. By the way, my feeling this way, just means I have more work to do IN ME.
12. I have asked for what I needed and wanted. I did not expect Chris to be a mind-reader. Did I know how to do this 25 years ago? NO! Chris has learned to ask for what he needs and wants, too. We have learned to be honest and specific about what we want, need, what hurts us, bothers us, in every area of our marriage.
13. We have been through lots of behavior training and parent training. Learning how to handle Ryan’s anxiety and meltdowns was crucial. Because it is not intuitive. PWS has its own unique qualities and mindsets. We had to learn how to communicate and how NOT to communicate with Ryan and how to finesse him.
14. We built a strong foundation early on in our marriage. We built a strong friendship. Going into crisis, this definitely was an asset.
15. We did not go into marriage pushing through doubts and red flags. We both joyfully wanted to marry each other, and knew that we were a good match, in love and loved each other. I have a theory that if there are doubts/red flags at the beginning, they get really loud and big and create cracks in trust, communication and unity, once crisis hits.
16. Chris is patient with me. I can be irritable and preoccupied at home. I am patient with him. He can be preoccupied and stressed at home. We accept each other’s moods and stresses.
17. We still like each other. We like to have dates, go on runs and walks, watch shows and try new restaurants. Not earth-shattering, it’s simple, and it’s sweet.
18. We have always supported each other taking breaks away from homelife. Whether it was for exercise, social time, or trips away, we made sure it happened for each other. We did not wait for the other person to OFFER it to us either. We asked. We chose. We made it happen. And we got the much-needed respite from schedules and responsibilities and stress.
19. We are willing to look inside, to grow, to change, to be willing to admit our weaknesses and patterns and funky dynamics. And try to correct. It is not easy to change ways, habits, thoughts, practices. I will not candy coat that. And yet, we still try.
20. I have learned how my perfectionism created totally unrealistic expectations of Chris, marriage, sex, family life. If I could go back and change my newly-married self and slap the criticisms and disappointments out of my head, I would. Perfectionism sets you up for such disappointment, among other challenges. Having a child with a disability has helped me recover from this. Well, I am still a recovering perfectionist, to be totally honest.
21. I have always felt supported by Chris. Whether in the day to day mundane and minutia, or financially, emotionally, my whims, my dreams, my ideas, my goals. Always. And I support him.
22. We abandoned the myth early on that “our spouses are supposed to meet all our needs.” This is not possible. No matter how amazing your spouse is, they will NEVER meet all your human needs. It is up to us to figure out what we need and how to meet those needs, and how to articulate those needs.
23. We have encouraged each other to have interests, hobbies, practices, and social time, outside of each other, and our kids. Have we ever done the “well you have had this much time away this week and I have only…” yes, we have. We have to communicate effectively and nicely about the free time we each can squeeze in (or not).
24. We trust each other. Completely. From the beginning. Always. No cracks in the trust. Thankfully. I get how major stress and crises and boredom can lead to affairs, I do. And I choose Chris. And he chooses me. Every time. All day long. Thankfully.
25. One more funny point--Chris is not a slob. That might be a deal breaker for me, the neat-freak, and constant declutter-er that I am. When we were first married, he used to tease me that I had to straighten the magazines on the coffee table before we left our apartment. He was right. And he still loved me and accepted me and my quirks. I am grateful.
Cheers to 25 more years!!
