my life as a disabled parent

A few months back I had the opportunity to interview some fellow (disabled) parents and roll up their experiences along with my own for MetroParent Magazine

I loved talking to these people and their stories totally touched me. I must confessed that it took all that was in me to not cry at times while they were talking. It was amazing to hear them say exactly how I often feel.

It’s hard to watch others do the things you want to do for your kids. You worry they are going to secretly wish their mom or dad was normal and be embarrassed. You feel guilty that your other half has to do more and might resent you or have regrets ever saying yes to the parenting adventure.

It was honor to meet these individuals, learn their story and write this piece. Please check it out.

MetroParent: My life as a disabled parent

OMG we’re pregnant

I always wanted to be a mom. I like kids and I think putting someone else first is good for the soul.  Without kids our lives would be centered on everything we want and need – which initially sounds delicious but eventually unfulfilling and empty. 

I anticipated the early years would be tough. My husband would have to do a lot to help. Deep down in my gut I felt it was worth a few rough years for a lifetime of memories. I hoped he would feel the same once it was all said and done.

It was St Patrick’s Day when I found out I was pregnant. I was happy. scared. mad. excited. terrified. giddy. I felt a million emotions during those first moments as the positive pregnancy test stared back at me.  Crap, what did we do?  Can we handle this?

I love the line from the movie from Juno, “That ain’t no Etch-A-Sketch. This is one doodle that can’t be un-did, Homeskillet.”

True that.

My pregnancy went well. Not knowing anyone else with my disability, I had no idea what to expect. I tried to be careful about not gaining a ton of weight.  I knew that would make things harder on my body and my arms with the crutches.

My biggest drama over the 9 months was a reoccurring fainting spell. The baby must have been cutting off circulation and it caused me to faint. The doctors first thought it was a blood sugar issue, a heart problem and even dabbled with thoughts that it was from a lack of protein. All the tests came back that I was perfect, so it is a mystery.  I lean toward a circulation issue because it always happened when I was sitting a certain way.  Regardless, it was scary.

I stopped walking without my crutches around the house because my back became sore. I think the pull of the belly caused me to move differently and it was pulling weird muscles. Once I exclusively used my crutches, my back stopped hurting.

I met with a genetic counselor in the beginning and they really didn’t know what to tell me.  She had no idea if my baby would have AMC but she said my odds were very slim.  I had ultrasounds every four weeks. 

Not a day passed where I ceased from whispering up a prayer that his forming body would be strong so he could make a fist, flex his ankles, jump, run and be a wild little boy.  I’ll never forget the first time I saw him sucking on his clenched fist in an ultrasound – amazing! So thankful.

My last two weeks came with major swelling. I know that’s common in pregnancy but for me it was extra bad. My feet were so tight I felt like the skin would crack. Wearing shoes became an awful experience. It took about a week after my son was born before it got significantly better.

My OBGYN was unsure about giving me an epidural and so I contacted my first doctor and Chief of Surgery at Shriners Hospital back in 1979.  It was amazing to talk to him and tell him about my life over the past 30 years. He anticipated that everything would go fine and there was no reason for a c-section unless the unexpected happens, which can be the case for anyone. He was pretty old (I’m guessing over 75) and pretty much retired but still helping out at the hospital. It was great to have the opportunity to talk and thank him for all he has done for me. Oliver was not even here yet and had already managed to trigger opportunities – making my life a bit sweeter.

On a Saturday night in the middle of watching Cops I went into labor.  Dr. Millar was right and it went perfectly. I personally was scared the whole time about delivery but with the epidural it was a breeze. Looking back, the 9 months of pregnancy were worse. Some girls love being pregnant, I was not one of them.  There is nothing fun about feeling tired, fat, emotional and having to wear elastic waste pants that come up to your boobs.  BELCH.

The first few nights and adjusting to life with a baby were rough but precious.  It was a wild ride of emotions and trial and error but that’s for another day, another blog post.  I need to go smooch my little boy.  😉

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