Marriage is hard work…add that to a life with kids, even harder…with a child with special needs…the odds are against you. Our marriage has taken its own journey dealing with issues I hope very few couples need to face.
Paul and I adore each other- we have for almost 15 years now. When Zack was first born, we were really united in our fight to save his life and love our other boys as if their life had never changed. There was nothing that I did, that Paul wasn’t doing- whether it was late night feedings or diaper changes with Jayden, driving Ty to JK, or housework. We were a team! As time went on and Zack’s needs began to unravel bit by bit…controlling feeding and GERD, discovering his hearing loss, failure to thrive, seizures, and physical delays, my role as Zack’s Advocate, Caregiver and “Doctor” became all consuming. I was CEO of this little life and I put my all into it. The rest of my energy was for the other boys and that really left nothing for my husband. Paul became the sole breadwinner so I could be there to get Zack all the help he needed. He was consumed by the role of sole supporter of the five of us and was exausted when he came home. Life was not what we planned and we were both sad and overwhelmed by the magnitude of our responsibilities and really unable to see the stress on the other person. We were stuck.
Last year, our marriage was tested- the journey had taken us to a place where we either needed to listen to each other, make some changes and put our marriage on our “to do” list, or we would become another statistic. We made a choice to make it work- we made a choice to be a team again.
1. Know that you are not alone- find blogs, online groups, support groups to talk honestly about the effect that your special needs child has on your relationship.
2. Find some wonderful books to help navigate your way through- “Married with Special-Needs Children” by Laura E. Marshak and Fran Pollock Prezant and “More Than a Mom” by Amy Baskin and Heather Fawcett are two of my favorites. 3. Admit that you both need to make changes to make this work.
4. Talk honestly about problems as they exist and speak the truth- it’s hard to admit that you are frightened, sad, angry or even disappointed, but it can be liberating to have your best friend, your greatest love, be the only one to know how you are feeling- the good, the bad and the ugly.
5. Build a network of a couple of good babysitters and supporters- so easy to say but look everywhere- Grandparents, Godparents, neighbours, even nurses or nursing students can all be a great resource. 6. Date again- a movie, dinner or if you are truly lucky- a romantic night or two away (great way to release some stress :-))! 7. Find individual therapists, marriage counsellors or spiritual advisors for regular or monthly “check ins” – the needs of your child can be like a rollar coaster and have peaks and valleys. Have supports in place for those peaks. An unbiased opinion or “Marriage Ref” is great to get you through a recent diagnosis or the birth of a child with special needs.
8. Give each other time to do the things that you love to do alone- for Paul- its soccer each Saturday…me, a mani/pedi with some friends! 9. While one of you will be predominantly responsible for your child’s care- be IN it together- go to the BIG visits together, make the BIG decisions together and be advocates together.
10. Renew your committment to each other- write a letter, poem or renew your vows…last September, we were fortunate enough to have my parents stay with the kids so we could go to Vegas together- Paul surprised me with an Elvis wedding to reaffirm our vows, celebrate what we had learned about each other and get excited about our future…whatever comes our way!