How Has Having a Child with a Terminal Illness Affected My Life?

You know, you read all these posts on social media about how God doesn’t give you more than you can handle…heads up, He did. I simply survived.

How God gives special needs kids to special parents…really?  What did I do to deserve this?  I was a pretty selfish person who had goals and dreams that were crushed by my son’s diagnosis…don’t think I was that special.

How He gives the biggest battles to His best warriors…they are children.  They are NOT born warriors, that are built that way through their lives.

I responded to a parent tonight of a newly diagnosed SMA type 1 child.  He is a twin to a sister, just like my Jake.  He has an older brother; my Jake has an older sister.  The similarities between their family and mine are epic.  I see myself in this mother, with the exception that she has social media and I had to travel to California to learn about other parents who could support me.  So, basically she has it easier…and yet it doesn’t get any easier.  The dream you had for your son: he would be a football or soccer player; he would be handsome and make all the girls’ hearts beat a tad bit faster; he would be the next Bill Gates, Brad Pitt, Troy Aikman…they all just bit the dust ad you are left with the devastating news that your son would not live to see his first birthday.  Now, you mothers and fathers take a moment.  You go in for a well appointment and the news is there is something wrong with your child; a couple weeks later you learn it is SMA and that your child-the vessel that holds the essence that is you and your spouse and that will fulfill all those goals you did not-is going to die within the next 6-9 months.  Take a moment and suck that puppy in…because it took me hours of researching WTF SMA was to get the entire picture and then I cried.  I cried for 3 days solid while I looked through web page after web page of children who HAD died from this awful disease. WE went back to the neurologist only to have him promise to look into alternative treatments and then NEVER call us again. 

At the end of those LONG 3 days…I swear I may have slept a total of an hour…I got a call from a church friend, now minister, who offered to come and help me.  How?  How do I need help?  MY parents and in-laws were helping with the children while I was a puddle…how do I accept help?  But Martha had ideas, and she came over and helped me construct a letter to EVERY SINGLE person associated with SMA in the world!  Okay, that’s an exaggeration….but she helped me get the ball rolling.  Then one of my students came over and offered to take Scarlett to see the movie Cars.  I couldn’t stay in that house one minute longer, nor leave without my Jake, and so the three of us jumped in her car and went to see Cars at the dollar theater…I accepted help again.

When we got home, my husband ran out the front door and said there was a man on the phone from Stanford University who said Jake could qualify for their clinical trial if we were willing to transport him there and back…i accepted the help.

To get there, we needed plane tickets.  There were charities that would help us.  I applied and accepted help again.   Once we got there we needed a place to stay and the hospital had a deal with a local joint-the motel was odd, cute, eccentric…not MY style, but I accepted the help and made new lesbian friends.

So when I was telling this newly diagnosed family about our journey I told them it was hard.  It almost killed me those first two years.  I was the most depressed fighting zombie you have ever met.  I once had a nurse describe me as the most depressed lady on anti-depressants she had ever met.  I was a mess!  But my son was surviving and I SERIOUSLY DIDN’T MATTER.  It didn’t matte that I could go for days without a shower and not ever notice!  The 75 pounds I put on were a shock to me when right before Jake’s MAW Scarlett and I went to Carowinds and I was kicked off a roller coaster for being too fat.  All that mattered was that he was doing well, that he wasn’t sick, that he wasn’t going to DIE on me.

So, what has being the mom of a kid with a terminal illness taught me?

1. We all have a terminal illness-it’s called living!  You are dying right now…so you have to get over it!

2. Don’t sweat anything!  Forget the small stuff…you just have to face it and move past!  Otherwise you get caught up in a Polar Vortex that will delay you two hours! 🙂

3. If there is a big pink elephant in the room-face it, call it out, and move past it!  It doesn’t win me any friends, but I swear it makes the bad go away faster!

4. Love your kids-all your kids-even the ones that are the biggest PIYA!

5.  Tell them you love them every day-several times a day-especially when they are being a PITA!

6. Go to the gym…it may not make you thin, but it will definitely work off all the frustration!

7. Accept HELP!  All kinds of help…whether you really want it or not!

8. Tell people THANK YOU!  God, those words go so far in life!

9. Make peace with your Maker.  God and I were on a tilting platform for a couple of years and although I still don’t think I deserve such a gift, I am so glad He gave it to me!

10. SMILE!  It takes years off your face and makes everyone around you feel so much better!


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