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Getty Couldn’t Ask for a Better Mother

From Mark:

Thanks to our craptastic medical experience, we have not been able to go on any evening walks as a family in weeks. Since we got the diagnosis, those walks have been a big part of what holds us together. It has been a time to get out, relax, and just enjoy our family. When you have a child with a terminal disorder, every walk in the park really counts.

I know our walks together are particularly important to Kate. We were both floored by the SMA diagnosis, and yet Kate was a real trooper, immediately launching into the fight to do whatever she has to do for her little girl.

In order to do what was best for Getty, Kate wanted to stay home and provide for her daughter. However, Kate did not blindly decide to just stay home, she did extensive research into work and other benefits we may be able to use.

Unfortunately, the reality Kate found was that the best option for the family was for Kate to go back to work full time to maintain full income and health care benefits for Getty and to keep a roof over her head. It is a shame that the best option for a family with an infant with a terminal degenerative condition who is susceptible to illness is to send the child’s mother off to work full time in a school, which is a germ cesspool.

Despite the seeming injustice of it all, Kate gets up every day, takes care of Getty, gets ready for work, and heads out the door, voluntarily leaving her Little Owl behind. I cannot imagine the knot in her stomach every day she leaves the house.

When Kate is at work, I know she gives her students her all. She is a wonderful teacher and I know she would never compromise her own teaching standards due to a personal setback.

After a hard day, she is always quick to come home to be with Getty. Similar to her teaching style, she takes great care to provide Getty only her best.

When I wrap up my work day, and we have some time as a family, I see Kate feeding, bathing, changing, and loving little Getty. Kate reads her stories, sings her songs, and tries to teach her to say, “who, who, who.”

It is a beautiful sight to witness the bond between them. Getty may have SMA, but she may never know it with all the love, care, and attention showered upon her.

When we got the diagnosis, Kate and I quickly came to the conclusion that, for as long as we may have her, Getty deserves only the best; and when it comes to motherhood, Getty certainly has it.

We face a hard reality so far from what we imagined, but you handle it with grace and strength. Thank you, Kate, for all your love, work, dedication. I look forward to many more walks with you.

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  • Jaime Gooden says:

    Aw, such a sweet post! You are all doing amazing things right now for Getty! It is so frustrating to deal with all of the so called “professionals”, but it sounds like you are making headway. Keep up the great work and hopefully will get to take that walk together soon.

  • Anastasia Liebler says:

    Well said. She is pretty amazing and she is so lucky to have you and Getty on her team. I say go team Storm: A family of super heros and unconditional love (as love always should be).

    I love you all. Goodnight sweet owl. I hope you dream of lovely things and get to snuggle in with your fellow heros. 🙂

  • Shash says:

    Mark, please consider the Mayo Clinic. I know they have a branch in Arizona as well as Minnesota. They bill based on income. And it is a beautiful time of year in Rochester, MN.

  • Steph T. says:

    This was one of the most beautifully written letters I have ever read…wow…very refreshing to read…
    …and I couldn’t agree more…

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