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Marriage and Special Needs Parenting

This month Derek and I celebrated our 7th Anniversary. It got me thinking about how our journey with Myron has changed us as individuals and as a married couple. I thought a lot about what we struggle with because of it and what we have learned along the way.

Marriage is not easy, regardless, of having special needs children. That is the baseline. And, I believe that any person married longer than five minutes would agree. That said, the stress of special needs parenting puts even more pressure on the husband and wife relationship.

The reasons special needs parenting makes marriage even harder are pretty straightforward. Parenting a child with extra needs, very practically, requires extra time and extra energy. It is emotionally and physically exhausting. Parenting a child with medical issues begets a very intense kind of worry. Dealing with medicines, doctors and diagnoses is not only overwhelming, but demanding and draining. Some of the experiences that we’ve been through, both in and out of the hospital, have been traumatic. With our emotions consistently heightened and our bodies and minds weary, there is no doubt, that our relationship has been affected.

Our marriage has, definitely, changed since Myron began having issues. We have fought and cried and wished for a different experience. But, we have also, laughed and loved harder then ever before. We have learned a lot about each other and what is important to us as a family. We figured out that some things on this journey come easy for us, and other things we really struggle with.

I sat down this month and made a list of seven things we have learned about each other and our marriage through special needs parenting. This is what I wrote...

1. We do not cope or react in the same way ---- Derek and I respond extremely different in moments of stress with Myron. Derek is a doer; A how can we fix it and how can we fix it as quick as possible kind of guy. He wants to take action, especially in emergency situations. I am very different. I am often second guessing what is the most ideal next step. I want to review our options to make sure we are doing what is best. I am saying hold on, what is the best move right now? maybe it is not our first thought. You can imagine how these two things collide. When the crisis passes, we realize we are both motivated by the same things, safety and love for Myron. We are just going about it in two very different ways. This is a huge area of weakness for us. We are still figuring out how to navigate our differences during stressful situations, but we have made steps in the right direction.

2. We don’t want our marriage to be consumed by Myron’s diagnoses ---- This is really hard for me... really, really hard. In the beginning, autism and epilepsy is all I wanted to talk about. I was obsessed, and, often, still am. It wore Derek down. For him, we were beating a dead horse every time we talked about. We had gone over the tests, what the doctors said,and what I have read a million times. It became all we talked about. We both knew it was time to table some of these conversations so we could laugh and enjoy each others company. Having a marriage centered around your kid’s medical diagnosis does not bode well for anyone involved. Now, we make it a point to talk daily about things that have nothing to do with autism or epilepsy. We, also, try to to do things for ourselves totally unrelated to our role as Myron’s parents. Derek recently took up woodworking, and I spend my free time reading or crafting. I, also, have my closest girlfriends who so graciously let me talk their ears off about Myron. It eases some of my anxiety by over talking with them, and saves my husband from draining conversations after work.

3. We will say YES if someone offers us help ---- Before I had Myron, when anyone asked to help me with something, I did not want it. I like to do things myself and not feel like I owe anyone anything. Now,with Myron’s difficulties and diagnoses, I say ABSOLUTELY! There have been many times where someone’s help during the day has been what gave me the energy I needed to spend quality time with Derek after he got home. When a family or friend has asked to take Ada during an appointment or hospital stay for Myron, I gratefully hand her over. If someone offers to bring us dinner or coffee during a hard week, I put in my order with delight. We often have loved ones offer to watch the kids so we can go on dates too. And our answer is and will always be YES! We know we need it.

4. We need to give grace to each other in our weaknesses ---- The high stress of parenting a special needs child will bring out your weaknesses. There is no way around it. It was important for me to recognize that Derek is also exhausted, worried, and overwhelmed. So, when, he takes it out on me I need to see and empathize with his underlying feelings. I have done the same to him. I struggle in this area, but Derek is a rockstar at this. He often talks me off the ledge when I am losing it. I am learning from him how to be more forgiving and gentle. Knowing that we are both carrying around heavy emotions helps us to be patient and understanding with each other.

5. We are each other’s greatest source of human compassion ---- No one loves your child the way you and your spouse do. Plain and simple. I have always taken comfort in the fact that Derek gets it. He gets the heartache of watching Myron have a seizure and the overwhelming feeling of hearing your sons name mixed with scary medical lingo. He understands Myron and can see his progress and setbacks. Out of everyone in my life, he feels the most like me about the situations we are in. That has been so comforting to me. When I feel the thoughts of no one gets it, I am thankful that I have a husband who does. He is doing it with me day in and day out.

6. We respect and want to encourage each others strengths on this journey ---- It is no surprise that Derek and I have different strengths. I am a researcher, I ask a million questions, I call people and prepare for medical appointments. I make the list of a thousand questions, that we go over together before our appointments. I am usually the one doing the talking to the doctors and professionals. I am in charge of all of Myron’s medicines and I keep track of every seizure event. Derek is not great at those things. So he has let me take charge of it. I am good at it and want to do it. Derek is good at other things that I am not. He is good at keeping me calm, holding Myron while we have long conversations in the exam rooms, and getting aggressive when we sometimes encounter medical professionals who are ignorant about Myron’s issues. He, also, carries the huge burden of providing our family, not only, with our basic needs, but with the quality healthcare that Myron needs. This burden is not just practical for him. He very deeply desires to do this for our family. He works so hard for this very reason. It helps me be patient with him when he leaves work late or works more after the kids go to sleep. We have different strengths and we let each other live into them. This is probably one of our biggest strengths.

7. We find the humor in hard situations and do not take ourselves too seriously ---- This has been a defining factor of our marriage from day 1, and it became all the more important to us in our parenting experience. Life is hard, and sometimes lightening the mood saves your whole day. We laugh a lot! I have been really drained lately and Derek likes to tease me when I say the most ridiculous things. It makes me laugh and I forget about why I was complaining in the first place. We have made jokes about the terrible hospital food and how many cookies Derek eats when we are there. We laugh about the weird things Myron does and we do not let post appointment serious moods linger too long. This is so important to me and anytime I am asked for marriage advice, this is number one on my list. Laugh with each other and laugh a lot.

Before, sitting down to write these, I was thinking this blog would be filled with all the ways our marriage is negatively affected by autism and epilepsy. It turns out that there are way more positives than I realized. If you feel like your marriage is struggling under the weight of special needs life, I encourage you to sit down and do this. Think of how you and your spouse have learned and encouraged your respective roles on this journey. Also, think of what you struggle with and ways to practically work on that. Reflecting on these 7 things this month has blessed my heart so much.

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