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Special Needs Child Reminds Mom Life Is Beautiful

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When Lisa Sorenson arrived for her 16-week ultrasound for her third and final baby, she was expecting nothing more than to find out the child's sex. Instead, she received devastating news that would change her family's life forever.

lisa and elizabeth sorenson

Indeed, she was having the third girl that she always wished for -- but the child would be born with extreme disabilities stemming from congenital hydrocephalus, a condition marked by excessive fluid on the brain that causes severe developmental delays and often death.

Lisa's doctor advised her to abort the pregnancy, saying that the child would likely not live long past birth. Today, Elisabeth Sorenson is 2 and a half and enjoys a full (albeit difficult) life with her two sisters -- Alexandra and Lorelai -- and the rest of her family in Kennewick, Washington.

We sat down with Lisa to talk about her life as a mother with a can-do attitude, and to find out how she became a strong and wise advocate for her child.

momlogic: You chronicle your daily life in a blog entitled, "The Far Side of Complexity." Explain that title for us.

Lisa Sorenson: My blog title came from a quote by Patrick Buchanan: "There is a simplicity that exists on the far side of complexity." Those words spoke to me because I strive to live a life free from stress and complications. Sometimes simplicity is lost in the busy day and age in which we live, but by going back to a slower and simpler life, we are able to find joy and beauty in everyday moments. And when we can find joy in those little moments, life is happy and content.

ml: What thoughts ran through your head when you found out that Elisabeth would be born with congenital birth defects?

LS: At that moment, it was utter devastation. I never thought that there would be anything wrong with my child, and when I went in for my routine ultrasound at 16 weeks, I was expecting no news other than the gender of the baby. But to be told that my child had a serious birth defect and that she would most likely die was like I was being hit with a ton of bricks. As the weeks progressed, it was hard to be growing bigger and bigger and feeling her move within me but not be able to have that fullness of joy that usually accompanies pregnancy and the hope of new life.

It was also hard when strangers would ask, "When are you due?" That painful question stung every time, knowing that in reality she could pass away at any moment. My mind also raced due to all the logistics involved. I am a planner. I like things organized. I like things to be prepared. But I felt like nothing was in my control. Would she live? Where would I deliver her? How long would she be in the hospital? Would she die? Where would I bury her? How would I care for my other two children as we dealt with the upcoming months? What kind of disabilities would she have if she lived?

Like I said, my mind just raced with questions of the unknown, and that was hard for me.
I dealt with all of this by doing what I do best and getting organized. I planned for every outcome -- whether she lived or died. I made arrangements. I met with doctors. I researched hospitals. By doing this, it helped me feel more in control again and at peace with what was happening.

ml: Your doctor suggested aborting the pregnancy. What would you tell parents who are faced with this choice?

LS: We were adamant that this was not something we would even consider, but he still continued to bring it up over the course of a few weeks. I think that from his standpoint, there was no chance that she could survive. At just 16 weeks, the ventricles in her brain were almost the size of a full-term baby's. With that rate of growth, her survival was impossible, so I think he saw my continuing on with the pregnancy as a waste of time, expense and emotional stress.

lisa sorenson

He also said that if she were to live, we would need to consider her life and the handicaps that she would have when deciding whether or not to abort the pregnancy. He said, "Many parents aren't prepared to deal with a child like this." This comment disturbed me more than any others that he made. The thought that someone would just get rid of the "defective product" and try again makes me ill to think about. Life is sacred. Each and every life.

Elisabeth is just as valuable as any other human. Her birth defects have left her body and mind severely handicapped ... but her spirit is pure and unblemished. She can feel love and she can give love. She will never know of evil or hatred or many of the other horrific realities that occur in life. And in a way, that makes her perfect. She will remain in a state of innocence, and I am honored to be in her presence each and every day. She reminds our family to cherish the simple wonders of life and not to get to caught up in the worldly influences that surround us. She reminds us that life is beautiful.

To other parents who face similar circumstances, who need to choose whether or not to continue on with a pregnancy, I would admonish them to choose life. This doesn't mean that things will always turn out perfect or easy, but it will always be worth it. Always.

ml: What do you want people to know about Elisabeth?

LS: Elisabeth has overcome a lot in her life. When she was born, her head was literally full of fluid and her brain tissue was compressed up against the inside of the skull. A shunt was placed after birth and continually drains excess fluid from her brain down to her abdominal cavity. She was left, however, with severe brain damage resulting in visual impairment, epilepsy and mental retardation.

She spent more than the first year of her life with little or no vision due to cortical blindness. It wasn't until she was 14 months old that we saw her begin to respond to things visually. Her vision continued to improve over time, but now, at age 2 and a half, her vision seems to have plateaued. She can see within a foot or two, but with what clarity I do not know. She has glasses but refuses to wear them ... she would much rather chew on them.

Epilepsy has been one of the biggest challenges we have faced.She began having seizures at 6 weeks old and was diagnosed at 7 months old with infantile spasms -- a devastating form of childhood epilepsy that causes damage to the brain. When the spasms began, we saw her regress in her abilities and have been searching for a cure to them ever since. We have tried treatments, diets and many, many medications, but we still see infantile spasms on a daily basis.

Developmentally, Elisabeth is very far behind. I remember looking at her when she was a newborn. She looked so normal, it was hard to imagine that she was going to develop differently than others -- but I knew that that's the way it would be. As time went on, I watched as other children her age began to eat, talk, walk, explore and learn. Elisabeth stayed behind. She is still very much like a baby and will probably always stay that way. She doesn't understand much, she has very poor fine-motor skills and struggles with feedings. But we work with her daily as a family and with trained therapists. We want her to reach her fullest potential ... whatever that may be.

ml: You travel with Elisabeth far and wide for doctor's appointments and procedures. What is that like for her and for your family?

LS: Elisabeth's pediatrician is local, but all of her specialists are out of town. We drive to Spokane, Wash., (two hours away) for her neurology, neurosurgery and ophthalmology appointments. Any craniofacial appointments are in Seattle, Wash., (three and a half hours away). The furthest we have traveled is to Durham, N.C., for her stem-cell transfusion.

Because Elisabeth was in need of surgery to place her shunt immediately after birth, I had to deliver her in Spokane because there is no pediatric neurosurgeon where we live. So throughout the pregnancy, I would travel to Spokane every one or two weeks for ultrasounds. When we were close to delivery, I stayed in Spokane at my sister-in-law's home. They have been so kind to me and my family and have always welcomed us with warm hospitality.

This had been a huge blessing, not only during times when Elisabeth is hospitalized in Spokane, but even on day trips for routine appointments. It's wonderful to have a place to stop and rest before driving home.

I have no idea how many visits we've had total since she's been born, but all I know is that we have become very familiar and comfortable with doctors' offices and medical procedures of all types. Elisabeth has, too. Just the other day, we took her in for a blood draw and she barely even flinched. This is normal to her.

ml: What is your biggest focus being a parent of a child with special needs?

LS: As a parent of a disabled child, my greatest focus is on her health and happiness. I don't worry about what milestones she reaches or what she can or cannot do. What I do focus on is her safety, her comfort and her happiness. As long as she is happy, and as long as she feels nothing but complete love and acceptance, I have done what I have set out to do.

lisa and elizabeth sorenson

ml: You made the big decision to give Elisabeth stem-cell therapy. Please tell us how this came about. How did it help her?

LS: While I was pregnant and doing research on hydrocephalic children, I came across a website called fetalhydrocephalus.com. That website became my resource for every question I had. It was a wealth of information from a family who had gone through exactly what I was going through just one year prior.

Their son, Owen, was the first hydrocephalic child to have a stem-cell infusion done. The hope is that by collecting stem cells from the cord blood at birth and reinfusing them to the body, the cells can help rebuild or repair damaged brain tissue. Because the cells are the child's own cells, there is no danger involved with the procedure.

Duke University is the only place to have this procedure done, and so after contacting the doctor in charge at Duke, we made the decision to have this done for Elisabeth. Our only hesitation was from a financial standpoint. Stem-cell therapy is considered "experimental" and is not covered by insurance. My husband and I decided that the opportunity to possibly help repair Elisabeth's damaged brain was worth any price.

We traveled to Duke with Elisabeth when she was 6 weeks old and she received an infusion of her own cord-blood stem cells. They still have a reserve of her cells at Duke, and we plan on taking Elisabeth back to receive the rest of her cells when she outgrows the infantile spasms. Hopefully the cells will be able to help repair some of the damage caused by the spasms.

ml: What are the best resources for people to learn more about Elisabeth and her condition?

LS: The Hydrocephalus Association is a wonderful place to learn about hydrocephalus, research that is being done and ways to help, either by donation or joining a Walk for Hydrocephalus. For information on raising a child with hydrocephalus, I strongly recommend Owen's website.



next: You CAN Feed Your Kids Better Food!
12 comments so far | Post a comment now
Sherri April 17, 2010, 6:58 AM

Thanks for sharing this article! Elisabeth and Lisa are among our online friends. Lisa is a phenomenal mother and such an inspiration!

Janice April 17, 2010, 7:12 AM

Wonderful article. Thank you for this.

Marilyn April 17, 2010, 8:22 AM

Lisa is not only a cousin of mine, but my hero. She inspires me as I read about her daily struggles and the optimism, love and compassion that shines from her.

Elisabeth is a beautiful angel, and her family loves and cares for her and it is inspiring.

Sandra April 17, 2010, 8:52 AM

I was so excited when I stumble upon Lisa’s blog. I had been searching the web for help in understanding Hydrocephalus. Reading Lisa’s blog inspired me and reassured that you could balance family life and still meet the needs of son with Hydrocephalus.

Diana April 17, 2010, 9:50 AM

The love and strength that Lisa and her husband have shown throughout Elizabeth’s ordeal has been a lesson in life for many of us. Rarely have I seen anyone cope with the issues they have faced with such love and grace. For someone as young as her to be such a light, such a symbol of strength, is a gift that all of us who know her and Elizabeth are blessed to have received.


Judi Pennyfeather April 17, 2010, 10:56 AM

Your story so touched my heart… our family had a little bundle of joy 50 odd years ago. The doctors told my aunt and uncle to let her die and get on with their lives, they refused and she lived until 2008. She was happy, smart, she just could not walk or feel from the waist down. She had a bag for urine and one for her bowels, but her parents did what parents should do and now they have no regrets. HANG IN THERE give her all your love .

judy April 17, 2010, 4:22 PM

I absolutely loved this story and the testament to the humanity of those who live with disabilities. My only son is 22 and has severe autism(nonverbal,24 hour care etc) and now lives in a wonderful group home with five other men and loving caregivers. I truly love spending time with him and look forward to seeing him when we are apart. He loves Disney movies, eating out, and going for car rides. He enjoys affection and has a great sense of humor and an awesome laugh. I am blessed to be his mom. The world just sees what a person can’t do,not all of the other things that make that person unique. But us moms know better! I wish Lisa and her family the best in the coming years as they get to know Elizabeth better and enjoy her!

Lori April 17, 2010, 4:41 PM

I follow Lisa’s blog and am weekly reminded of how precious each human life is. Lisa is inspiring - thank you for sharing her story so many more moms can be inspired by her strength.

Michelle April 18, 2010, 6:13 AM

Lisa is an amazing woman and mother. She also completely inspires me with her grace, kind heart, and playful spirit. Thank you for giving her another voice to talk about her sweet daughter. Elizabeth is a beautiful little girl, and while I am sad for the hardships she has, I know that she is and always be a testament to hope, love and triumph.

Summer April 19, 2010, 8:54 AM

Lisa is an inspiration to many, and captures daily life in such a wonderful yet simple way. It is such a pleasure reading what Lisa and her family are up to. Simplicity is something I too strive for, such a wonderful way to live!

PriceRoxanne July 30, 2010, 8:06 PM

Do you recognize that this is high time to receive the loan, which will make you dreams real.

Ten Tees January 8, 2011, 6:47 PM

Nice article. Enjoyable to read. I’ve got a small thing to offer about funny t-shirts.


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