When Your Family’s Game Plan Is Changed Because Of A Special Needs Child

Competitive.

If there is one word that describes our family, it would be competitive. My years of motherhood have experienced more sweaty clothes, balls, sport shoes and practices. The talk around the table seems to always bring up sports. So…why wouldn’t deciding the size of your family have a little opposition?

We thought we had it all figured out in 1991. We were building a new home in the rural town we grew up in. My husband, Paul, was stepping away from an employer to pursue investments on his own. I was challenged in my job as a cost accountant, a job that I had worked myself into after 12 years. I felt good about this job because I had given up college so that we could get married shortly after high school. We were high school sweethearts, so it made sense that I would work full-time while he finished college and played college football. We had the perfect family – a 7year old son and a 5 year old daughter; but, we were planning for one more child.

I remember going to the doctor’s office for my 1st appointment at 8 weeks. He questioned my dates: “Are you sure of your dates, Sheila?” Not buying what I was telling him, he scheduled an ultrasound. This was going to be a new experience for me because I never had one with my other two kids. When the day came for the ultrasound, Paul came with me. I cannot remember the thoughts I had as I laid on that table. I recall the technician moving her probe around and flipping around the screen. “Congratulations – you are having twins!” I clearly remember what I said after that to Paul… “You always get your way.” Our opposition. I felt we should have three kids where Paul wanted to have four.

We can do this. We moved into our new home in December, but by the end of January it got rough. Preterm labor put me in the hospital for three days. They sent me home with a terbutaline pump and mandated bed rest. The scary thing was that I could not feel the labor, I was only feeling back pain.

OK…we can do this. Remember the early 90’s. No remote for TV. No cell phones. No computer. My days were long. In addition to working in investments, my husband is also a referee for Division 1 Men’s Basketball. So that meant he was traveling a lot during the winter months. My son and daughter slept by me on the main floor in sleeping bags the nights Paul was gone. Their bedrooms were on the 2nd floor, and I couldn’t do steps.

We made life work. Our goal was to get these babies to 36 weeks. Some meals were brought in, and it was all very humbling.

37 weeks came and we had our 8th ultrasound. It was April 19. After much viewing and measuring they felt we should deliver the babies. The discordancy between them was too great. Plans were put into place for a C-section until they found out my birthday was the next day. “Enjoy your day,” they said, “and we will deliver them on the 21st.”

On April 21 we became a family of six with a son. Mitchell weighed 5lbs 11oz and Madison 3lbs. 14oz. We were beyond blessed. They both were doing very well. An air ambulance did not have to be called to our small town hospital.

Exhaustion from lack of activity the past 10 weeks and a reaction to anesthesia made them put up a “No Visitors” sign on my door. We left with Mitchell on day 5 with Madison staying for 5 more days just so she could put on a little weight. We lived 5 blocks down the street from the hospital. I know I didn’t follow the rules completely when it came to driving after surgery. I needed to get to the hospital to feed her.

It was the start of just doing what you have to do.

My early days of life with the twins are pretty much a blur. I remember I had to wake Madison every two hours to encourage her to eat. I was trying to breast feed them both, but Madison also received formula with a bottle. We had decided that I would not be going back to work which was going to be so different for me. Paul was confident that he could make it work with his job. This was going to be a crazy stage of life for our family.

A Mother’s Instinct

As a mom, there are moments in life when you just know something isn’t right. At about three months I was sensing it. Madison was colicky. She just was not happy at times. It was at one of these moments when I had both babies in front of me that I’d notice something wasn’t right. Mitchell would give me eye contact, and react to me. But with Madison, as hard as I tried it always seemed like she was looking beyond me. It wasn’t eye contact. I also felt like she looked a little gray. As a mom you question yourself. You wonder if you’re imagining it. I was exhausted. I really had no help besides my husband and older kids. They both appeared healthy, but this mom needed a doctor to tell her that.

Our local Family Practitioner who delivered them felt it would be a good idea for us to visit with a pediatrician in the next city. My mother’s instinct kicked in again. First impressions are huge to me. His old leather doctor bag did not sit well with me. I remember he didn’t say her name correctly — a totally different name.

Hello….This is MY daughter that you need to focus on now!

As a mom you have hopes and dreams for your children. Mine for Madison were just shattered. He said she would probably never walk. I watched a little girl who NEVER crawled or walked around furniture. But I saw a child who stood up in the middle of the room and taught herself balance. After balance came steps. She is our ballerina…walking on her toes much of the time.

Miles and miles were put on our vehicles traveling to Iowa City to work with a neurologist. Tests after tests were taken, and we tried nearly every possible drug and diet to tackle those seizures. It’s not good to have a child that walks and has seizures. The doctors say it is not possible, but my mother’s intuition says that her seizures have something to do with sun and bright lights. Anyone that knows her will attest to the fact that you will probably find her sitting in front of a sunny window seeking out the light.

Somehow this life we thought we had planned out was torn apart and rewritten. My idea of four kids that included a set of twins was nothing like I imagined.

I cancelled out on the twins group that met nearby. I honestly didn’t feel like I had twins. One was learning new skills and the other learned very little. I felt lonely. I did not know anyone that had a child like mine in this small rural town. I didn’t have a world of technology at my fingertips. How could anyone understand?

I would take her to church and I would make it work by having her sit on my lap. The older ladies would pat me on the back for doing such a great job with her. We would go home and my days were draining.

My other three kids were busy with sports, piano, band, church, and friends. My husband was busy still traveling the country in the winter with his reffing. He was a huge help when he was home, but I was pretty much the caregiver. She was basically a young toddler in a growing body. She did not talk or communicate but I could tell her needs. She walked and dangerously climbed kitchen tables. Because of her seizures, you had to stay nearby or a step ahead. I think she knows us, but she does not express feelings so she will go to anyone that takes her hand. Danger means nothing to her. There were a lot of “why me’s” and “why her?” It was a life to this day that I do not wish on my kids as they’ve started to have their own families.

Nevertheless, we were thrown into this life by God, and we did the best that we could do.

I have had my fill of doctors over the years. She received occupational therapy and physical therapy. AEA came into our home and later she took the van to a school 25 miles away for Special Ed. It was my goal to get her into the same school as Mitchell, but that never happened. We were given help thru the state with some Respite dollars. Our local college, Northwestern College in Orange City, IA, was a great place to find this Respite help. It gave us a little stress free time to go to the kid’s activities. We were blessed with some great help and made lasting friendships.

As a mom I wanted the world for my kids. We encouraged them to be involved, and in a small town they could do everything! I also was proud of my husband. He worked hard and traveled much and he provided well for our family. He was involved with his children, and when it came to sports he was all over it. He never missed a game if he could help it. He was always up for practicing in the front yard after supper.

I think this is where I was too selfless. Many nights I was left watching Madison because it was easier than taking her along. My trick to get myself ready if no one was around to watch Madison was to put her in some bath water. She loved her bath. To this day she only needs three things to be happy: sun, water, and salty chips.

I still had this overwhelming feeling that no one really knew how hard this was.
Honestly, I cannot remember when I made the decision. Paul never pushed me into deciding, but he knew I had to be ready to put her into a care facility. When she was about 12 years old I had this day that I felt like I was having a panic attack. I was stressed, I was tired, everyone was doing their thing but I was home with this child that was bigger and stronger and so overwhelming at that moment. I knew that EVERYONE needed to be taken care of. My kids were not getting as much attention as they should have. The “Madison Reason” was used a lot. Our marriage was okay, but there were a lot of stressful times. It would have been easy for one of us to throw in the towel. Statistics with a special needs child will say this too. I needed to take better care of myself.

But more importantly, Madison needed better care. She needed to live in a place that was structured for people with needs. There was never going to be a good day to have her leave, but God was telling me she would be taken care of. I agreed to look at a facility 70 miles from our home.

The visits were finished and the paper work was signed. She was on their list. We had just made the toughest decision of our life. My heart knew this is what she needed, and all was good. There were no openings in this children’s facility with 32 beds, and openings do not happen often. I was relieved we would continue to be a complete family…..They called three weeks later, and we had three days to decide. Ugh. In my heart I knew we had to let her go to better care and for our family to rest. Faith, Hope and Charity became her new home at age 12. Her new home. But we were still a family.

We are still her advocate. She did attend high school during the days in her new community. I have a diploma to show for it, but she never did a test or a speech in her life. By age 21 we had to find an adult facility for her, which was probably close to the 2nd hardest day in my life. I felt like we were starting all over again. She now lives about 140 miles from us. It has been a hard transition for us, and we are fighting for what is best for her. Someone will always have to make this fight.

My kids have many trophies, ribbons, accomplishments, good report cards, and great friends…I could brag them up! Much of this is packed away in boxes. What my kids have that I am more proud of is their love and openness to the lost and those with needs. Madison will never have any idea of how much she has impacted people. She was put in our family for a bigger purpose in life. We are a better family, and much better people because of her.

Recently I decided it was a good time in my life to do something for myself. The journey with Younique felt right for me. A little makeup can make you feel special, and as moms we there are many days when feeling a little special makes a huge difference.

Younique is a company that is passionate about all of their natural products. I have listened to young stay-at-home moms that have helped provide for their family by selling their 3D Mascara! This company is so much more than mascara though. I like the idea that they have created a foundation for sexually abused women and children. The first retreat will be in a few months. It is one small way I can give back.

I am excited to share the mascara and lip glosses with you! I know all of your lives are busy, but it is important to take care of yourself. Even if it is just putting on a little mascara!

Be sure to look for my special on my Facebook page.

My life is full. Our children are grown and living out their dreams. We have four grandchildren who we can spoil. This past fall, I said to my husband that all I wanted for Christmas was for Madison to come home for a day and have a really nice family picture taken. Jenni O Photography did such a great job! Two aides from her facility drove her here, and I knew going in it was going to be stressful. The pictures were not going to be perfect, but I was OK with it. Life is not perfect. We need those bumps to make you learn and grow from it.

I think back and ask myself if I would change anything. I would be lying to say no…I would change everything about Madison. I feel really bad for her. She has had a rough life. But she appears happy. Give her sun, water, salty chips and (great care)!

But honestly, even though the journey was hard, I would only change one thing. We are who we are because of Madison. We wouldn’t be where we are today if she was not born into our family on April 21st, 1992. You are asking me my one thing to change: I wish I could hear her talk. I yearn for the day I can hear her hopes and dreams. She will have a testimony to tell. That day WILL come sometime.

Happy 23rd Birthday, Mitchell and Madison!

Each Day is a Gift….
find the beauty that each day has to offer.

Sheila Janssen – Orange City, IA

A HUGE thank you to Sheila for taking the time to share her heart with all of us. And another thanks for offering to give away some of her amazing products to TWO lucky Mommy’s Me Time readers! She will be giving away two bundles, each including the 3D mascara and a lip gloss. She sent me these products to review, and I have to tell you they are a game changer. The mascara is like wearing extensions, except it’s just regular mascara that is easily cleaned off. I’m so excited for you to try it!

The giveaway will be open through April 27th, and is open to US mailing addresses.

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