Special Olympics: Power of Words-Soeren

Special Olympics: Power of Words-Soeren.

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What Doesn’t Kill You Makes You Stronger!

This is a post I wrote for my local newspaper called the Tribune – Columbia, MO

“What Doesn’t Kill You, Makes You Stronger”

October has always been one of my favorite months.  I enjoy the cooler crisp air, comfortable jeans and sweatshirts. I love the changing of the leaves, October festivals and apples. Excitement fills the air and outdoor activities are a joy. The sun is warm and the air is light. October feels good.

For me though, since October 2004, this month has another meaning – the hardest of my life. October 15, 2004 was the day my son Austin ended up in the hospital with a severe bleed on his brain. It is the day that forever changed my life and who I was. It forever changed my family. My cries forever coat the walls of the University Hospital Emergency Room. It was all so unreal. How could this happen? It is a trauma that lives in my soul.  It will never leave me. I have more peace now but I can at any moment revisit that place and time. I really don’t ever want to forget. I want to learn and grow from this experience and I do believe I have but like most journey’s it is usually on-going. It is one step forward and two-steps back.  I still have much room to grow and improve.

It has been 8 years since that fateful day and it still haunts me. I still replay it all in my mind. The weeks leading up to it. The many moments that could of lead to stopping the progression of what happened. If only this one thing or that moment would have been different my son would not have had as much damage and would be better today. So many ways this could of been stopped if only… If only we had known. If only someone would have listened. If only someone had figured it out sooner.

Most of us have had a trauma of one type or another. My very first was the birth of my firstborn. My daughter Abby was born at 34 weeks and was in the hospital for 18 days. Being a first time Mom, the whole experience was rather traumatic for me. For about 2 years, thoughts of her birth brought tears to my eyes and sadness in my heart.  As Abby grew into a healthy happy child, the trauma of her birth and hospitalization became a distant memory. My heart was able to heal but Austin’s medical issues are ongoing and it’s not so easy to move on.

So this October 15, I will allow myself a small pity party – well after my son’s doctor appointment and he is back at school. I will allow myself to grieve and then I will go about my day as usual. I believe we all need to give ourselves a chance to grieve wether it be a major trauma or a minor disappointment. Allowing our feelings helps us to learn and grow and heal from them. We often give kindness to others but not ourselves. I believe that I need to release my feelings to help the healing process but I don’t want to get stuck there. I need to be kind to myself and then move on. I don’t want my past to totally determine my future. It is a part of me but not all of me.

I have great joy in my son and I love him so but the pain of what happened is etched into the fabric of our lives. They go together. They cannot be separated. But at the same time it does not totally define me.

Please be kind to yourself and allow grief if needed and then use it to become stronger. The song by Kelly Clarkson “What Doesn’t Kill You, Makes You Stronger” is such an inspiration to me. It is so true. We can learn from our trials and tribulation and reemerge stronger.

So while October will remain one of my favorite months – that fateful day of October 15 will always haunt me.

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My lil man Austin and I

My lil man Austin and I

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Hello world!

I have finally decided to start blogging about my life with my family. Ours is a different life with having a child with severe brain injury and a teenager and a preteen! While our journey is different than many families, we also have many similarities with the typical family. I have learned so much from my children and I just want to share. Sharing will also help me. Writing, when I take the time to do it, can be very therapeutic

Hope you will join us in our journey!

 

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Fifteen Years Already!?

 

It’s August – the long hot summer days are coming to a close, the children will be heading back to school and our wedding anniversary is here. Every year, my husband and I have a little celebration for our anniversary. Another year of our lives together but all the sudden this year is our 15th year! Where did the time go? How did this happen? Don’t get me wrong – I do not wish to be with anyone else. I love my husband and could not do this life we have with out him. He is my lifesaver, my anchor in the storm of raising our three children and day to day grid of this life. Together we are stronger. It’s just, how did we get here so fast?

 

From what I have been told, it is pretty amazing that we are still together since we have a child with a disability.  When our son Austin was about a year and a half old we went to St. Louis to see a neurologist for a second opinion. He abruptly told us that nothing would help our son.  We needed to save our money and go on a cruise because we had an even greater chance of divorce than the average couple because we have a special needs child. We left his office deciding we would never see him again – he should not be a doctor who works with families of children with special needs. Where was his compassion? How dare he tell us that our son was hopeless. Our son is wonderful and he has made small improvements and we rejoice in each one. The good that came out of that was that my husband and I decided together that we would prove him wrong. It only made us want to help our son even more and make our relationship stronger. We were not going to be a statistic. We wanted to tell that doctor that he could go you know where but we left politely. We did have quite the conversation about him in the car ride home.

 

While this has not made our relationship all hearts and roses it gave us a common goal and the strength to prove that doctor wrong. The other thing that has really helped us is the realization that we each play a necessary role in our family.  Without one of us the family could not function as well, or at all. We each play a vital and critical part. Acknowledging this helped us to stop thinking that the other spouse did not do as much – we were happier. Are we perfect?Far from it, but we recognize (most of the time) that we are both doing our best to take care of each other and our family. It has not been an easy road and the lows have been huge at times but I am glad we have managed to hold on.

 

I am thankful that my husband did not cut and run when the going was tough. First our son almost died (and was given a 1% chance to live) and then what felt like dooms day – the day we were told that our son had severe mental retardation.  Many men and or women would have left – would have said forget this. But my husband stood by and held on with me. Not that it was easy for either of us- not that we even grieved together much. There were times I felt he was not there for me (and he probably felt that about me some to) and we wondered if our marriage could survive.  People grieve at different times and different ways. For the most part we have now both come to terms with what happened and have acceptance but there is always that little thing that brings the grief back to the surface. It can happen at the strangest times. It is just a factor in our life. It will always be there just a little. Mostly our son has brought us closer together and has given us much joy. He is a wonderful gift as well as our beautiful daughters. We are blessed. 

 

Below is some practical advice on marriage by therapist Laura Marshak, Ph.D.  Advice I hope to keep in the back of my mind. While he is not the perfect man, and I am not the perfect women we are holding on strong. Happy 15 years Honey!!

 

 

Staying together through special needs

1. Protect your marriage.

One of the reasons marriages are more prone to divorce is that care for the child often overrides everything else in the family.

2. Embrace your differences.

Differences are amplified when disability enters the family. Couples differ in emotional reactions, future expectations, discipline and educational and medical treatments. Couples should ask: “What is good about the fact that my partner has a different point of view on this?”

3. Take care of yourself.

Parents need to learn that they will be no good for their children, or have anything to give to their marriages, if they do not also protect some time for themselves.

4. Become a team.

Couples often divide responsibilities in a way that is practical in the short run but can cause problems longer term. Becoming a team also requires making space for genuine co-parenting while giving up some control.

5. Protect romance and sexual intimacy.

Loss of romance and sexual intimacy is one of the many problems amplified in couples raising children with disabilities. Many disorders result in sleep problems and increase the likelihood that children sleep with their parents or a couple is too exhausted to have the energy for sex.

6. Practice forgiveness and realistic expectations.

There is a tendency to form unrealistic expectations of a partner simply because the pressures can be so great. Because resentments then build easily, it is important for couples to practice forgiveness when appropriate.

Source: Married With Special Needs Children, Laura Marshak, Ph.D., professor of counseling at Indiana University of Pennsylvania and a psychologist at North Hills Psychological Services in Pittsburgh, where she works with parents of children with disabilities.

 
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