She Was Diagnosed With An Incurable Disease. Now, She Wants A Family.

A little over 6 years ago, my entire life changed.

My typing speed and accuracy slowed dramatically, I was desperately tired after being awake for only 20 minutes, and my right knee kept giving out. My handwriting changed, and I thought I had a stroke. My symptoms kept getting worse and worse in the following months.  I started falling while walking and soon afterwards, I lost my ability to type completely.

Two trips to the ER later, all I knew was “everything is fine” and “take a vacation to distress.” I remember thinking that I was going crazy. Everyone would know and I would be sent to a mental institution with white coats and padded walls. I sobbed at the thought of my husband, Joe, being married to an institutionalized person. Completely gripped with fear, I consulted “Dr. Google” with my symptoms. The result?  Brain infection.  Since “brain infection” sounded more treatable than “bat shit crazy,” I decided that I needed antibiotics ASAP.

Pretty soon, lights seemed blindingly bright, quiet noises gave me the sensation of a knife through my eyeball, and I had a constant headache the likes of which I’d never experienced. I pressed forward with life because I did not want to alarm my family. Why stress them out about something that just needed some antibiotics? Eventually, I did confess to my family and they urgently told me to get a MRI. Would a MRI reveal some sort of “crazy” indicator on my brain? When we arrived at the hospital, I served up my brain infection story with extreme poise. If I could only convince these doctors give me some antibiotics, I was sure I could overcome my mental illness.  One nurse (who I now consider the nicest person in the world) saw past my well-practiced story and Joe’s pleas for an MRI.  She delivered a dose of Valium through my IV and all of my fears, all of my thoughts of mental illness, all of my shaking and worries slowly subsided. My mind was empty and peaceful for the first time in months.

I got a MRI. A young doctor came into the room. He looked like a resident who had been working for 4 days straight. Hair disheveled, coat wrinkled. He asked Joe to sit down.  All the valium in the world would not have helped me at that point. He’d told Joe to sit and I knew what that meant. It meant that they’d seen my crazy and that the straight jacket was waiting just outside the room. The doctor looked nervous and he gave me a glance filled with pity. I decided to go gracefully. I’d let them put the straight jacket on me and I’d tell Joe that I loved him. I would be the Grace Freakin’ Kelly of institutionalization.

We found something on the MRI” he started.  SHIT!  SHIT!  I knew it!  I was crazy!  “We think you have Multiple Sclerosis.” You know what I said?  I was so freakin’ relieved that I told that young man, “OH THANK GOD!  Can I have a sandwich?” Valium talking again, combined with hunger.

Joe was bawling. What is Multiple Sclerosis? Is my wife going to die? Will she need brain surgery? I’m sure that the doctor explained it to us but all I could think about was that sandwich.

The next months were a series of daily visits from physical therapists and doctors’ appointments.  My mom basically moved in with us for a month because my challenges combined with the fact that Joe and I were young and broke. For a few weeks, my symptoms worsened and my vocabulary shrunk to that of a very small child.  I had to re-learn to walk.  Through all of this, all of the team of doctors, nurses, therapists, etc. who were helping me kept saying, “It’s very treatable.  We just need to get it under control.

The rest of this story is long and boring.  The “Cliff’s Notes” go something like this: I did get my typing and speech and walking and everything back. I did return to work eventually. I spent the next three or four years trying different medications to help “control” my MS but nothing really worked and the damage to my brain and spine continued to get worse.

Almost two years ago, I ran out of treatment options. There was one drug left but it had very low success rates. I had 2 options: Give it a try or give-in to MS. The progression of MS is not pretty. You lose your abilities slowly and eventually die from complications. I would certainly be in a wheelchair within a very short period of time. I decided to try the drug but I prepared everyone in my life for the inevitable.  My husband and I bought a single story ranch because I knew a wheelchair was in my near future.  I started making “job guides” for my co-workers and got all of my financial affairs in order for Joe.

All my preparation was for naught. What happened to me was that the drug WORKED! It worked! I was not getting better, but also not getting worse. I could walk, I could talk, I could see, I could work, I could experience emotions other than gripping fear. I started to open myself up to the possibility of a “normal” life.  I’d seen other people with MS having families and I wanted that too. I wanted to throw myself into life fully and completely and stop living amongst the impending doom that was just around the corner. I wanted to love my husband fully and stop constantly worrying about how he was affected by my illness. I wanted my life back.

Joe and I discussed having a family. It was a possibility we never considered before. We talked to my doctor and she told us that I would need to stop taking my MS drugs for a year before we started trying to conceive. The second the baby was born, I would need to start the drug again, which ruled-out breast feeding.  People with MS do this all the time, but for me, this seemed like a bad idea. The doctor said she would support and help us as much as she could but I’d just lost so many years of my life to MS.  If I stopped taking my medication, my illness might start to act up again and it would likely end badly. I couldn’t allow that to happen and neither could Joe.

So, what options were left? There was surrogacy, but that was expensive and my eggs would not be safe to use unless I stopped my MS drug. There was also adoption. We jumped in headfirst and we researched the heck out of adoption.  We read books, blogs, news articles and we went to lots and lots of meetings hosted by agencies.  We picked an agency and a “type” of adoption to pursue with no real drama to mention.  We endured a process known as “homestudy” where social workers judged us and determined if we were fit to be parents.  We prepared marketing materials designed for birthparents searching for adoptive parents.  We did all of this with gusto because the truth was that the process of adoption felt like a walk in the park compared to what we had endured with my health.

Tara and babyToday, we stand on the edge of a major life change. We’ve just gone into “circulation” with our agency, which means that birth mothers and fathers who inquire about placing their child will receive information about us. One day, one of these people will pick us to parent their child and shortly after that, we will face the hardest day in our lives when we walk out of a hospital with our baby in our hands and a birthmother who is suffering a tremendous loss in our hearts. If I told you that I am not scared of that day, it would be a lie. The truth is, I am more scared of that day than I was of being hauled off to a mental institution. The very idea that, in order for me to get what I want (a child), someone else (the child’s birthparents) has to suffer what will likely be the greatest loss in their life is completely overwhelming. When I was at the peak of my illness, I remember the physical therapist standing behind me saying, “left foot, right foot, left foot, right foot” in a slow, droning cadence. When the feelings of fear about this situation start to catch up with me, I remind myself of those words and… I press forward.

Ava Love,

Tara Nicklay

Click HERE to check out Tara and Joe’s awesome adoption page. Let’s support them in their efforts to start a family. 🙂

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