Archive | March 2012

Answered Prayers

“To what do you attribute your son’s survival?”
“The only way I can explain it is God.” I answered.
Any parent facing a similar situation would do anything for their child to survive. If there was a button I could have pressed that would make everything better, I would have pressed it. Doctors could not heal our son. There was no drug to cure his diagnosis. A ventilator was used to help him breath but there was no quick fix to wean him off the machine.
One day his oxygen level dropped fourteen times. We were being told his lungs just weren’t able to keep up. The situation seemed dire. I excused myself from the Neo-Natal Intensive Care unit and went into the hallway. I made one call to activate the prayer chain at church. Shortly after my call, a new respiratory therapist came to Samuel’s crib. She suctioned him. Nothing. She tried again when “something” broke loose. There was a mucus plug blocking the tube in Samuel’s throat which helped him to breathe. Soon after, his oxygen level rose to an acceptable level. The crisis was over. I thanked God.
I pray over Samuel every morning and every night to this day. It doesn’t mean each day is going to go perfectly but I am comforted in knowing that God hears our prayers. A dear friend gave me a verse when Samuel was in the hospital. “He gently leads those who have young.” Isaiah 40:11. I treasure that passage.
Two years ago, Samuel passed out when he was receiving therapy. An ambulance was called while my husband and I worked to clear his airway. I quickly prayed, “Dear Lord, help us”. I was holding my breath while I was waiting to see my son breathe. On our second attempt, Samuel started to cry. At least he was breathing, Praise God. The ambulance transported us to the hospital. The doctor determined that Samuel wasn’t breathing correctly. She decided to put Albuterol directly down his tracheostomy tube. It was a risk, but it worked. Thankfully, we were able to take our son home that night. He had no ill effects from the episode.
I love our son dearly. I know his times are in God’s hands. I cherish every moment. With each smile, my world stands still and explodes with joy. And so, I continue to pray.

How Different Are We?

I met a mom today who has a seventeen-year-old son who wants to be autonomous.  Dad doesn’t want to let his son go out for spring break. Mom thinks that it is good to let their son go out. She feels if they raised their son right, he will make the right choices. As I was listening to this dear mom tell her story, I found myself relating to her.

How could I relate to this mom raising her healthy son? I am a special needs mom raising a non-verbal six-year-old son on a ventilator. As different as we may seem, we face the same struggle; being a parent.

When my son Samuel was three years old, my husband wanted to take him to the park. Every time he asked, I would say “No.”  I was an overprotective even fearful mother who did not want to allow for any unforeseen circumstance to arise from such a venture.

Then an opportunity presented itself which we could not pass up. Through the kindness of the Make-A-Wish Foundation, we were given a vacation to Disney World Orlando. For seven days, we went to theme parks and restaurants taking Samuel out up to three times a day.  We learned how to have a checklist making sure we didn’t forget any of his emergency equipment. There was only one time we forgot his diapers when we were at a theme park. I was extremely thankful when another mom gave me one of her daughter’s diapers!

At one point, we were standing by a large pond as the sun was setting.  I could hear the sound of Samuel’s ventilator as he lay in his stroller sleeping. I looked out over the pond and thought, “Are we crazy?” We were miles from the car, even more miles from a hospital and a thousand things could go wrong, yet here we were. However, nothing went wrong. No emergencies. No mishaps. We didn’t even get lost!

After we returned home, my husband asked me if we could go to the park now. I wanted with all my heart to say, “No” again but what was my defense? We had just come back from seven days in Orlando. I finally said,”O.K”. We went to the park on a beautiful brisk sunny day. The birds were singing and Samuel was snug in his bouncer under a tree.  Again, nothing went wrong. It was a new beginning.

Wrongful Birth Suits

I heard about wrongful birth for the first time several years ago in a case in Tampa where the parents sued their genetic councelor.

http://www.lifenews.com/2007/07/31/state-2387/

Today, I read about another Wrongful Birth Suit. The couple are suing because the genetic counselor did not tell them that there was a possibility that their child could have downs syndrome. See story below.

http://www.lifenews.com/2012/03/06/couple-sues-doc-didnt-suggest-aborting-down-syndrome-baby/

We met with a genetic counselor when I was pregnant with Samuel. He was clear that our son may have a lethal form of dwarfism. In the end, it turned out he was right. But God. (One of my favorite two word sentences!) But God had other plans for our son who is now six-years-old.

Would Samuel be healthy if our genetic counselor was wrong? Our life would be different if that were the case. As it is, I am a special needs mom who delights in the joys of raising our precious son. I understand that these parents are suing for monies that would help them to pay for raising their special needs child. We were blessed to have outstanding health insurance at the time of Samuel’s birth. While I do not agree that a lawsuit is the right answer, what is?   How do we come along side families who have special needs children? One possibility is a ministry where members share the cost of each others healthcare. Mike Huckabee spoke to the executive director of Christian Health Ministries to explain how the program works.

http://www.youtube.com/watch?v=OYTaVcayLQg&noredirect=1

Could this help families who have special needs children? What are your thoughts?

Hope Lives Here

To Families Facing A Diagnosis of Thanatophoric Dwarfism:

My heart’s desire is to come along side families who are given no hope. My son was not expected to live past birth; however, he lived. Six months in the hospital and five and a half years later he still lives.

It breaks my heart to see other families going through this…are they given all the options? Are they told ALL these children die…no exceptions? Are they told the diagnosis these children have is not compatible with life. Are they given no hope? I certainly was when I was pregnant with our son. I heard of a few survivors but none living past seven years of age.

Was I told that there is a child with TD that is now 25 years old! No. Was I told about another child with TD who lived to be 20 years old? No. This is what I was told:

“Do you want to take your child home?” the doctor asked.

“Yes”, we answered.

“O.K., he will need tracheostomy surgery and a g-tube put in his stomach. Then you can take him home.” the doctor replied.

We said, “O.K., let’s do it!”

We knew that they had no hope for our son. We knew they thought he was going to die.

Are parents facing the same situation (a diagnosis of TD) told about our son? There are two other families I am in contact with whose children are survivors of TD. These children can survive but how will the parents know unless someone tells them. We are willing to share our son’s story so that they will know.

You can go to Samuel’s website at www.caringbridge.org/visit/samuelmann to read my journal these last several years but what is most inspiring is to see our son’s smile in the pictures posted there.

With hope,

Evelyn Mann (Samuel’s Mommy)

God’s Alternate Construction

“Did you see my son hit that baseball out of the park!” the excited father yelled to everyone in the stands. Everyone stood at the same time watching the boy run from base to base and then slide to home plate.

“Safe”, the umpire declared.

Everyone erupted into a wave of cheering and triumph as the play won the game for the team.

The father was understandably proud of his son. We parents cheer whenever we see our children triumph. Some parents though are experiencing a different journey where victories for their children are not so clearly seen. There is a whole world of special needs parents raising their children and also cheering each victory. In our family we are living the words, “I can do all things through Christ who strengthens me.” The victories we experience are quite different from an able bodied child. Though different, each victory is celebrated as if the child hit a home run.

Ask any therapist of special needs children and they will tell you that the smallest victory is cause to celebrate. Therapists are schooled to be patient as they wait for these wee ones to display even the most inconsequential accomplishment. For one child it may be eating their first bite of solid food. For another it may be grasping a toy for the first time. Able bodied children also experience these first’s but for many special needs children these victories are years in the making.

Each journey for a special needs family is different.  Some disabilities are mild while others are profoundly debilitating.  What is the same of all these children is that most parents are fiercely proud of their children no matter what the diagnosis.  My husband calls our son’s diagnosis an example of God’s alternate construction. He looks different but he is still fully made by God.

What would special needs parents want other parents to know about their children? That we face struggles, although not the same, as other parents. What is the biggest compliment you can give a special needs parent? Pay attention to their special needs child. Talk lovingly to the child even though they may not be able to respond. How can you support special needs parents? If you are curious, ask about the child’s diagnosis instead of wondering and never knowing. Ask the parent what their biggest blessing is in raising a special needs child. Ask what their biggest need is and how you can help.  It may be to pray for an upcoming doctor’s visit.  Listening can be the best gift you can offer. Many parents have no support group with which to share their joys and struggles. Simply knowing that you care can mean so much to a special needs family.  In our church, we have some very special people who thoughtfully buy our son diapers every year. The next time you see a child who is a little different be bold and reach out to the parent.  You will be glad you did.