Thursday, March 10, 2011

Challenges in Everyday Living

Jon and I were asked to give a talk at Pre-Cana about “Challenges in Everyday Living” for couples to be married in the Catholic Church. I have decided to post our “talk” to share with you some the challenges that we have experienced and how we have overcome them. My hope is that other couples that have special need kids, especially couples on a “program” may find our words helpful and encouraging as well.


PRE-CANA
CHALLENGES IN EVERYDAY LIVING


JON – INTRODUCTIONS

• Karen and Jon
• Married 14 years next month (April 26th – yeah us)
• 6 year old son Kevin
• Jon is a commercial lender at KeyBank
• Karen with the better of the two jobs is a professional mother, and yes I mean professional


KAREN – WHY WE ARE HERE

When Diane called and asked if we would give this talk, we felt honored that they thought of us. Especially since, Diane has been a good friend to me and knows that Jon and I have not had a perfect marriage. We made the decision to give this talk because we felt like we had something to share with you that may help you in your own relationships. Plus the added benefit of spending some extra quality time with my hubby, reflecting on the challenges we have had in our marriage, and how we have overcome some of them. So we hope that you find, what we have to say, helpful and encouraging.


JON – CHALLENGES

Most couples start off in marriage thinking that their time is their own, that there will be time to think and dream together, and they will enjoy the “better richer and in health” parts of their vows they took for a long time. The “worse, poorer and sickness” parts don’t enter most pre-marriage thoughts, or if they do, they are dismissed as something that will happen much later in life or to someone else. These are some of the thoughts that we had early on in our marriage, so I am speaking from a little bit of experience.

I have found marriage to be great. I have a fun traveling partner, a planner, someone to come home to, someone to plan our future together, and someone who I genuinely love and like to “hang with”. But somewhere along the way, we found challenges, or hindrances and obstacles, pop up in our life that began to make our marriage more difficult. Hindrances can be anything from the differences in individual personalities, to our particular needs and wants, to general differences that simply get in the way of things running smoothly. Usually these challenges are expected in a marriage, who is going to do the finances, chores, etc. I also mentioned obstacles. Obstacles are simply things you are not prepared for. And an obstacle may come now, never, or sometime later in your marriage.

What we have found is that a strong marriage is essential. We need each other to deal with the challenging obstacles. The obstacles become much more difficult to deal with when you try to go it alone. The opportunity that can come out of obstacles is to learn how to be closer together through high frustration, escalating emotions, medical concerns, behavior problems, housing considerations and family and relationship issues. Marriage is actually a job without an end. I’ll say it that again, it is a job without end.

We have also learned that a crisis in a marriage can help us determine our true priorities. We hope that you never have to experience any type of crises, but I think that it is reasonable to say that it would make sense to prepare yourselves so that if something does come up you can be prepared how to handle it. And one way to prepare for a big challenge is by getting good at solving the small ones together.

So what am I trying to say? Well actually Karen can probably say it much better by telling you our story and some of the hindrances and obstacles we have experienced in our own marriage.


KAREN – OUR STORY

In our short 13, almost 14 years of marriage (April 26th, yeah us), we have had many challenges, in more ways than I care to remember. When we were first married, the challenges that we faced were little things like who is going to take out the garbage. We learned to work out our small challenges by compromising. For example, we each did our own laundry, because we liked it done differently; and when we cleaned, Jon cleaned the upstairs and I cleaned the downstairs, this was because he didn’t like to clean so we had to be on separate floors. I’m not sure if it was because I actually liked to clean, or he didn’t like my off-key singing to country music.

As you can tell, at that time in our lives, we still liked to do things our own way and it took us a while to blend together and become a team. But now all of that has changed. In fact, looking back, those little things seem so trivial to us now, which is probably something that comes with experience and age. But when the current challenge that we face daily is our son Kevin, the little things just don’t seem to matter much to us anymore.

From the beginning, my dream job was to be a Mom, but it took us a long time to have a baby, which was probably the first big obstacle that we encountered in our marriage. This was something that challenged us for years. I had envisioned what life would be like with a baby and the family that we would have. But soon after Kevin came into this world, the life I had planned quickly disappeared. A few hours after Kevin was born he began having seizures. To make a long story short, Kevin has Cerebral Palsy because of a brain injury he had before birth that was caused by a stroke. This was devastating to us. The normal life that I had been planning and impatiently waiting for had drastically changed. And those futuristic vows, that Jon just mentioned, “for worse, for poorer and in sickness” just fast forwarded. Our nice married “normal” life had changed.

It has been a struggle to find a “new” normal with a special needs child, not only in our own home, but with our extended family, and in our community. We have also willingly added constant changes and challenges to our life by choosing not to follow the traditional treatment of special needs kids. We found some people in Philadelphia that teach us how to do all of Kevin’s treatment at home, this increases his odds to catch up to his peers.

The pressure of Kevin’s intensive home treatment program ultimately challenged us to work through our conflict in all areas big and small and to find a way to work together. In fact, I believe that the small challenges we had to work through in the early part of our marriage helped prepare us for the years of waiting to get pregnant, which then helped prepare us to be Kevin’s parents.

Kevin has accomplished so much on this program with the gracious help and support of our family, church, and community. We have celebrated many victories, including no seizures or medications for over four years, and the not so small miracle of walking, just two years ago.

A quick word about family and friends; we have found that some people may not agree with the way we choose to raise Kevin or live our life, but the important thing is that Jon and I agree. We can listen to advice and opinions from family, friends, and even doctors, but ultimately Jon and I decide together what we think is best for us. You may be familiar with the verse from Genesis 2:24, “For this reason a man will leave his father and mother and be united to his wife, and they will become one flesh”. God’s original plan was for oneness, leaving parents and uniting with our spouse and becoming one.

What we want you to know is that, it has taken a long time for us to figure this out, we are still learning, it has not always gone smoothly, and it is constantly changing.

If you ever want an example of a couple that has gone through high frustration, escalating emotions, medical concerns, behavior problems, and family and relationship issues that Jon mentioned earlier – that would be us. But since then we have learned to work together better, and over time, the story is actually a happy one. Over time we have become stronger and even happier, even happier than in the honeymoon stage of our marriage.

What we have learned and continue to learn is that for Jon and I to stay connected and loving towards each other we have to work together and share responsibilities, we have to be sure to take time out for ourselves, individually and as a couple, and most of all we have to have good communication because our “normal” is constantly changing.

So I want you to know that even though you may not have a special needs kid, there are plenty of other challenges that you may not plan for, that will present itself to you in your marriage. And every issue that arises in a marriage has the potential for conflict, so Jon is going to explain some ways to help you through some of this.


JON – COMMUNICATION

I am not here today to tell you who should cook the meals, how to manage visiting in-laws, or who should pay the bills because as Karen mentioned most of those “hindrances” have now been managed into opportunities to work together, in our opinion.

I would like to talk to you about how to work through conflict in your marriage by working on being expert professional communicators. Well, what do I mean by that?

Communication is essential in every marriage. And I don’t mean through electronic devices. I realize that you have a communication talk with another couple today, but I would like to reiterate it a little. And it just goes to show you how important this communication stuff is. So all you non communicators out there, guys, I am mostly guessing, who don’t like to talk it out, I am afraid you are going to have to talk it out. I have had to painfully learn this as a husband and I am now better for it. I guarantee you will not only better your marriage but also your careers as well.

I would like to take a moment to brag a little about myself. I am in a group of about 300 commercial bankers in KeyBank’s franchise. I am consistently in the top 10 in performance amongst those bankers and it is not because I am smart or know everything about banking – IT IS BECAUSE I LISTEN.

What I have had to do to understand others, is to listen, because what I have found is that at times I don’t understand things and I am generally clueless. For example, Karen may be upset and would take something out on me, then I would get upset then we have a mess. What I have figured out, is that Karen can be upset with something that has nothing to do with me, but if I take the time to focus on what is being said, not just the way it is being said, take some time to ask some questions, and even put myself in her situation, I can understand much better where she is coming from and get to the root of what is bothering her, because sometimes she doesn’t even know what’s really bothering her.

Expression is another important skill to develop for effective communication. To make yourself understood, we all need to express ourselves well. I thought that I generally did this part very well. However, what I have learned is that my lack of patience, at times, prevented me from being a good communicator. And at times has caused things to go not as smoothly as I would have liked. I had to learn that if I didn’t communicate how I feel or how I view a situation in a positive manner then things in our “normal” life would never change and we would just continue to be stuck on old issues and continue to struggle…and who wants that.

So what I am saying is, that if something is bothering you about your spouse, take time to listen, express your thoughts positively, and suggest a change in a loving way. We all have to be open to change and willing to change our expectations. This will work in your careers as well – positive expression.

If you lose communication in a marriage you lose your connection to your spouse and then that can create all kinds of problems in your marriage. Karen and I have found that by sharing our innermost thoughts, frustrations, hopes and desires with each other keeps communication open, honest and vibrant, which ultimately fosters safety and security. We have also realized that it takes time and energy to listen and express ourselves positively and most importantly, it must be a priority.


KAREN – WIFE AND MOTHER ROLE

What I have learned in my role as a wife and mother is that, our goal as a couple and as individuals is to first develop our relationship with God, second to keep our marriage relationship strong, so that third we have what it takes to raise and care for Kevin – in the beginning I did this part all wrong.

And also keep in mind that work, service, and friends – while important – cannot take precedence over our relationship as a couple, or our family. This is why something as seemingly simple as coming here today to talk to you, can become a challenge in our current life.

So like I said, I got some of this backwards. When we first began Kevin’s home treatment program I readily cut out all the extras from my life to devote myself to Kevin’s healing journey. But unfortunately, I also cut out “me time” and “couple time” and it wasn’t long before things began to unravel and conflict quickly began to arise between Jon and me. Friends, family, and especially Jon, would tell me that I needed to take care of myself (put my oxygen mask on first). But it took me a few years to understand that by giving myself some time to breathe and slow down, I could be a better Mom for Kevin and help him even more.

Also, be sure to take time regularly to connect to each other, it’s easy to drift apart as you become accustomed to your daily routine, even if you don’t have kids. Unfortunately, as unromantic as it may sound, maintaining passion and intimacy can take effort and planning, or it likely won’t happen. And I’m not just talking about the bedroom. We found that a monthly date night helps us to reconnect with each other. This is our couple time together, it not only benefits us as a couple but individually as well, and Kevin can see that love shine through and benefit too.

Jon continues to encourage me to take time for myself. For instance, if I have had an overly challenging day, Jon will come home from his day at work and tell me to go relax and take a bath. And after Jon works his job all week long, he willingly does Kevin’s Saturday half-day program for me so that I can go to my yoga class.

For me, yoga and meditation is where I have been able to develop my spiritual growth even more. By nurturing the spiritual side of my life it helps me deal with my daily challenges that we all inevitably experience, and it helps to put it all in perspective for me. As they say, “don’t sweat the small stuff”. I am learning to be in the moment, to think good thoughts, and breathe. So even though yoga and meditation is something I do on my own, it is something that creates a better mental and emotional attitude for me, and ultimately makes me feel more connected to God, and to Jon.

So even if you forget and get your priorities wrong it is possible to learn from that and come back stronger.


JON – HUSBAND AND FATHER ROLE

Now this may all surprise you all but my role is the husband and the father. I know, shocking. One thing that I have learned in my role is that – “If Mama ain’t happy, ain’t nobody happy.”

In all seriousness, I have learned that my role can actually be really easy if I focus on one thing. I still struggle with this, but none the less it helps. So guys, pay attention, here it is, this is all you have to do. Love, honor and cherish your wife. Wow, easy right! Well most times, but you will have to work at it your entire life. Remember, marriage is a job without an end. And it is your job, as a husband, to figure it out. My wife needs to know that I am committed to her and cherish her, and that nothing will break that. It’s good to embrace a “don’t quit” attitude…I’m in it for the long haul, day to day, moment by moment, till death do us part.

I try to focus on communicating my love to my wife every day – and remember not just with electronic devices. One way to do this is by recognizing that whatever kind of day I have had, there is a good chance that Karen “had a day” too. This is when I can put Karen’s needs before mine. She gave you the examples of me sending her for a bath after a long day, and that I will help out on Saturday’s so she can have a much needed break to her week. Because, honestly by giving her that break, brings her back rested and happy – because when Mama’s happy, everybody is happy.

The best way to show my love to Karen and Kevin is by making them my number one priority every day. Day’s that end in the letter “y” is generally a good rule of thumb. Karen requires a different type of time and attention than the kind of time and attention that Kevin needs from me. They are my priority over work, family, friends, hobbies, all of it. Sounds easy, but I sometimes I fall short and feel pulled in different directions. But by communicating and making decisions together about the extras in our life and remembering to honor and cherish each other’s opinions we can keep each other happy. We can tell you for a fact, based on experience, that strongly disagreeing about these issues in a negative way just goes nowhere. So work together as a team to make your marriage thrive. You can’t make everyone happy but making each other happy will flow into the people you surround yourself with – kind of like the force. “May the force be with you.”

My other great role is being a Dad. The thing that benefitted me upon becoming a Dad, was that I had no preconceived expectation of what my life would be like with a son. I didn’t have visions of us playing baseball, or spend time thinking about what kind of activities he would be interested in. Frankly, I just can’t think that far ahead. And your role as a dad and husband can be expected to change, so the more flexible you are the better for everyone.

This is what I know now, I seem to have some of it figured out. Well at least for now, because as I said life is all about change. When things do change, I will take the time and effort to figure it out again. I hope all of you do as well.

Life isn’t always fair. And many people say they have learned the most through those unfair times, so don’t be afraid to face those challenges. We will all experience joy and laughter, sorrow and pain. We will all have conflict both small and large. The goal of marriage is not to be conflict-free, but to handle conflict correctly when it occurs. If you don’t have conflict now, just wait, it will happen, so be prepared

Staying focused in our marriage won’t keep us from failing, getting frustrated or wishing for a different life at times. Some of the choices we make will often require us to work through failures and frustrations. But if we do so in a healthy way, our marriage will be a blessing not only to us but to others as well.

And now my beautiful blessing will tell you about the abundance of blessings in our life.


KAREN – BLESSINGS

Although rarely, but sometimes, I still feel sorrow for our lack of a normal life, but I can also truthfully say that Kevin is a real blessing to us.

I think God chose this challenge for us to bring us closer to Him, to make us stronger in our marriage, and to inspire others. It is always remarkable for me, to hear that Kevin inspires others, especially when we have received so much from the people in our community. God has blessed us with so many good people to give us the help we need to complete Kevin’s program on a daily basis. For our story, could not be told without including the countless number of family, friends, neighbors, and our church community that have helped us. You’ve heard the saying – It takes a village to raise a child…well we have had at least a 100 different people help and support us in one way or another. Some people came daily, some people came weekly, and some people walked in our door exactly when I needed them to. The progress Kevin has made would not be possible without their help and the abundance of prayers from family, friends, and strangers, near and far to give us the strength to continue on this intense program for Kevin. I depend on that strength to keep me going every day. There have been some days when I know that it is one of those prayers from some unknown person that was the reason I was able to get through my day or maybe even just that hour.

But most importantly, God would not have given us Kevin if he didn’t think we could handle it and ultimately enrich our life more. Just like, he won’t give you more than you can handle in your own marriages. God doesn’t expect us to understand the challenges that He gives us, but to accept them. God wants us to go with His plan instead of the ideas we conjure up in our heads as normal. When we embrace the challenge God has given us, then that makes us a better person.

Remember God has a plan, He knows best, and what you think you want, may not be what is best. This is what “Thy will be done” means from the Our Father. And remember to thank God for all of the blessings in your life even if it seems He doesn’t answer your prayers just know that he may have something better in mind for you later on.

At this time I would like to tell you how handsome and good looking my husband is. The end.

Parents with Hope

"Parents with Hope" is a website support group for parents at the Family Hope Center.  Tim is the Site Adminstrator of the website and posted this yesterday...and I thought I would copy and paste it on my blog to share with all of you.

A powerful visual reminder of our calling as parents:



As many of you may know, not only do my wife & I receive help from the FHC for our daughter Tori Joy (now age 5), but I also work at the FHC to help connect families through the website and in other ways. We live 30 minutes away, and 2-3 times a week I'll drive in to meet with families to talk with them about the website & other media opportunities we're working on.


One day not long ago I was walking from the kitchen area (aka "Cafe La Famiglia") to head back to the office area. A parent was about 10 steps ahead of me. In that parent's arms--lying horizontally--was a small child. The child's head was visible on one side of the parent, and the child's legs were visible on the other side of the parent.

As the parent walked slowly forward, the picture was unmistakable. The child was helpless. The parent was carrying the child and bearing the child's burden / need. It just reminded me that this is what each of us parents is committed to doing, simply because they're our kids and it's what we're called to do. The picture was both tender and powerful at the same time.

Be encouraged to keep taking the next step, one at a time, as you help & love your child. It is difficult at times, but we all know it's the right thing to do--for their sake, and for ours, since it's our calling to love them, having been placed in our lives.

Tuesday, March 1, 2011

Bacteria & Digestion and Strawberries & Behavior

As you know, digestion and elimination has been a huge issue for Kevin that we have struggled with for several years. At Christmas, we had a glimmer of hope after the nine day poop marathon (AKA: “Christmas Miracle”). Since then, things have been better but still inconsistent.

Last month, we got the results back from a stool test that found an overgrowth of C. difficile, a “bad” bacteria. We have started Kevin on a three month supplement program to balance the intestinal ecosystem with anti-microbial’s. We also continue to do the “Liquid Diet Day”, one day a week, normally on Sundays, we consume a totally liquid diet, usually water and chicken stock broth. This was recommended because Kevin has multiple food and environmental sensitivities, and it helps rest and cleanse the digestive system, helping it function better. And by the way, when I said “we consume a totally liquid diet”…I do mean all of us. For me, it has been an enlightening experience. I have benefited greatly, by realizing that I don’t need to constantly give myself food in order to have the energy to get through my day. I can actually feel good and have the energy to get through every day on much less food than I thought. A very good thing to realize about myself.

Do you remember when Kevin had the energy-based allergy clearing during our last visit at FHC (Blog Archive: 2010 – October – Allergy Clearing)? Strawberries, was one of the foods that came up as a sensitivity, each of the three days. So the last clearing that was done we were unable to determine if this food was ever cleared. I have not added any new foods to Kevin’s diet because I wanted to get his digestion and elimination consistent before adding something that may cause it additional stress. But, I have been giving Kevin strawberries, on a four day rotation. I kept my eye on his digestion and elimination to see if there were any connections between the two. A food sensitivity means that it does not give a skin reaction, like some other foods that Kevin is allergic to (dairy, nuts, eggs, etc.) but will affect him in other ways. During the month of February, I decided to keep notes on my “Kevin Calendar” what days he had strawberries. Also on this calendar I keep track of BM’s, behavior, and other changes to try to find connections, and I also make notes of improvements that we see in Kevin to report during our return visits at FHC. Well, a couple weeks ago, I noticed that on the days that he had strawberries he would also decide to quit crawling during his program. Meaning, we would be crawling laps around the house, and he would quit, or lie down on the floor and refuse to continue. I would then have to stay with him, not permitting him to move from that spot, until he would decide to finish crawling his laps. This usually would last about 40-60 minutes. So after the third time, I determined strawberries was causing this…so no more strawberries…and fortunately no more “major” behavior problems. A few days later, I recalled that during our summer program, I had a very frustrating time with his behavior and his cooperation with crawling/creeping laps. And I remembered that over the summer I was giving him “green smoothies” made with leafy greens and frozen berries, nearly every day!!! This is so mind boggling, that we have to be on a constant look out for connections between everything in our kid’s lives. I do feel some guilt when I think of all the terrible days we had due to his behavior and now I know (good old hindsight) that it was caused by the strawberries I was giving him. By the way, I am adding detective to my ever growing resume – nutritionist, cook, teacher, organizer, therapist, etc., etc., etc.

Two Year Walking Anniversary

Kevin's Two Year Walking Anniversary was on February 26, 2011.  We celebrated by taking at walk in the warm RainForest on a cold winter's day.

Check out this year's Walking Video.  To compare his first walking video from 2009 and last year's First Year Walking Anniversary go to the Blog Archives on the side of the blog: 2010 - February  - One Year Walking Anniversary.


video

Here are some pictures from our first visit to the RainForest this winter.













President's Day Weekend with Cousins

Kevin's cousins came to visit on President's Day Weekend.  We had a fun day at the Science Center.