she says they’re insane, but I say they ROCK

So we have some great friends in this life. Tamara & Jason are among them. We met back in the late ‘90’s when our hubbies were attending seminary in Fort Worth. We were carefree… with good jobs, a love for coffee, and no kids between us. We played often, laughed hard, took trips and lived out a fantastic friendship during these years.

After school, the Lord took them one direction and us another. But the ties that bind us remain unbroken and when my phone rang a few months ago, from Missouri, I thought… “I only know one family there…”

Tamara was one the other end and after the usual “Girl! How in the world are you???” stuff…she just began to open up about what the Lord was doing. I was really surprised, desperately happy and a little bit in awe.

They were adopting! That’s always music to my ears!

But here’s the kicker.

Several years ago, during a particularly difficult time in their ministry, Jason and Tamara had traveled to see us. They ended up staying the weekend with our family at my parents’ home. They needed refuge and respite. I’m not sure they got either! But we loved having them here and sometimes laughter truly is the best medicine.

At one point, their toddler son, Zach, was attempting to walk up my parents’ staircase. Tamara mentioned to me that they was concerned about him…that they actually had several concerns.

And they were completely founded.

Enter Duchenne Muscular Dystrophy.

We’ve watched them from afar raise their son with grace and prayerful parenting. We’ve begged God on their behalf and have grown in our love for them as we see the effects this devastating disease has had on their precious son.

We recently had dinner with Jason when he was in town for a ministry conference. He spoke a lot about Zach, DMD and their life…and their adoption. It got me to thinking, maybe some of you need to know Tamara. Maybe you need to hear from her. Maybe THIS is what No Hands But Ours is really about on some level.

So I wrote to her and asked for her help. I sent over several questions that I thought readers here may benefit from hearing the answers to. As always, this great friend of mine didn’t disappoint.


Tell me about your day to day. What does life look like with Zach?
Zach lost ambulation almost two years ago. He uses a powerchair fulltime. We use a hoyer lift for all transfers. We have a van with a built-in ramp. He is completely dependent on Jason and I to get dressed, get in and out of bed, use the bathroom, shower, etc. His arms are still strong enough for eating, brushing his teeth, using his laptop, etc. When we tuck him in at night, since he is lying flat, we have to physically pick up his arms and put them around our neck in order for him to hug us. (sorry, that is so sad but it is true…)

What is your hardest struggle?
Our greatest struggle is watching the devastation of this disease and being helpless to do anything about it. Others have compared it to your child being stuck on the tracks and a train is barreling down and there is nothing you can do to throw him off the tracks. The physical burden of caring for Zach is nothing compared to this. Most days are okay, some days it seems like this disease is devouring him.

What is your greatest triumph?
Our greatest triumph is that Zach has the best attitude and perspective on all of this. He has said out loud that he does not know why God allowed him to have this disease but He must have a good reason. He seems wise beyond his years and understands that God does not always give us the answers and that is okay. We can trust Him anyway.

Tell me about your adoption…
International adoption has always been a possibility for us. We always planned on having three or four biological kids and then adopting. After Zach’s diagnosis and my diagnosis as a carrier, we decided against having any more biological children. We often wondered how adoption would ever fit into our story. Caring for Zach is a full time job that requires so much of us, physically and emotionally. We had sort of put adoption out of our minds.

Then this picture of an orphaned little boy with Duchenne came across our path. We both felt that God had uniquely blessed us with everything we needed to care for this child. We have an accessible home, we have an accessible van, we have good health insurance, we have access to excellent doctors in St. Louis. How could we not share these blessings with this new child? How can we leave him there, knowing that he is going thru the same awful disease as Zach but without a mommy and daddy? We can take care of him, we can show him the love of a family and most importantly, we can introduce him to Jesus.

Since there is no cure for DMD, and knowing what you know as a parent of a child with this disease, how did you come to the decision to choose to adopt a child with the same need?
We felt that if not us, NO ONE may want him. How many families really want a child that cannot be “fixed.” Not terribly many. And that was too much to bear. We HAD to take action. We know that our adopting him will not save his physical life. There is no cure for this. But we can make his life better.

What do you want to say to other parents who are considering a similar situation or an adoption like this?
Don’t do it.! Just kidding. I don’t have a good answer for this.

What have you learned about yourself though this?
That we are insane.

Is this a risk? Aren’t you putting yourself in a nearly impossible position? {I only asked this because it is what so many are thinking. Tamara knows my heart, and our history in choosing a child with CHD after losing one to it in China. There is absolutely NO JUDGMENT intended from me in this question.}
Yes, this is a great risk. We are willfully opening our hearts to this child knowing that we will most likely outlive him. And he will most likely be the second child we will have to bury. But, we believe the eternal benefits outweigh the temporal. That in the end, when we are all with God in eternity, whatever sacrifices we made on earth will be worth it (Romans 8:18). And if our behavior is going to match our theology, we made the only choice we could. To obey God’s call to go get this boy.

Don’t you just love her!?! Don’t you want to reach through your screen and hug her neck and say, “YES!!!” Because no adoption is without loss and pain and heartache. But so many times, we as parents can make a devastating choice to let go of the expectation to play it safe {we’ve played it safe in adoption too…so again, no judgment whatsoever!}, to embrace the risk and the heartache and to LOVE a child that seemingly no one else is willing to love.

As she stated here, Tamara told me on the phone that morning that she knew that outside of an accident or some crazy unexpected circumstance…she would outlive both of her sons. She said to me, with a strength I don’t possess, “I know I’m likely going to bury them both, Kam. But what else am I to do?” She went on to ask me several times over the course of an hour {and a few times since then}…”Do you think we’re insane? This seems crazy.” And in the next breath she’d say, “But we know it’s right.”

I don’t know about you, but I love this kind of “insane.” I’m drawn to this kind of “crazy.” It seems to me that a little over 2000 years ago some pretty smart people were calling Jesus those very same things.

So, Tamara, my dear friend…you’re in excellent company.

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{In case you’re unfamiliar with DMD}

About Duchenne (from Parent Project Muscular Dystrophy)

Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.

Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties.

Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation. In other words, it can affect anyone. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.

Comments

  1. Anne Jutt says:

    Beautiful!!! Thank you so much for sharing this story!

  2. LOVE!!!

  3. Christina says:

    I live in Mexico and my step son has DMD and I can say I am just learning to focus on his life and nothing more than Jesus love for him! His two half brothers went to heaven almost 3 years ago four days apart! On the 13th we will celebrate 3 years more than we expected on his 15th birthday!

  4. Yes, I love her. Yes, I could hug her, and yes, I love her kind of crazy. Thanks for sharing their story. Such beauty in this family and these decisions. May God grant them great provision, care and peace. Needed this on this day, my friend.

  5. Lisa Ellsbury says:

    Please let her know that I understand completely, while I don’t have a child with that type of muscular dystrophy, I have willingly adopted children with severe congenital heart defects knowing that I will most likely outlive them. We’ve done this not just once but four times. I have been through the death of a child and I understood completely what we were signing up for. There is no better “crazy” than being crazy obedient unto The Lord!!!! Praying for them during this process.

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