Remarkable Parents and Advocates Who Never Give Up
By Mary E. Ulrich
“You know the ones.
They never give up.
They ask the tough questions.
They demand answers.
They show up at budget meetings and want copies of the agenda and handouts.
They show up at board meetings and introduce their child.
They study the friggin’ law and quote it at you.
They call the State Department when they can’t get what they want at the local level.
They are politically savy–not politically correct.
No matter how many times we tell them, “You are not credible because you are too emotionally invested,” They won’t give up.
They don’t care the budget has been cut.
They don’t care we are sharing offices and there is no toner for the copy machine.
They aren’t reasonable about “waiting”… or accepting excuses for shoddy performance…or people who don’t call them back.
They embarrass us by going to meetings where they are the only unpaid person in the room, and they are more prepared then we are. And they go to more meetings… and more meetings.
They just won’t give up.
If we try to slip one by, it’s like they have built-in radar. They just seem to know when we filled a staffing gap with an inexperienced person, or if the caregiver had a beer.
If we tell them the “research says”–they want to see the research.
They give us copies of new research.
They call the researchers–collect.
They even have the nerve to point out flaws in the research studies and want their child in the next study.
If we tell them they can’t possibly understand the research, they read books, network, take courses until they become the experts. Some even get their Doctorate degrees.
They insist we don’t give up.
When we do something right, they tell us we are wonderful and they are thankful, BUT….
Damn, there is always a BUT.
When we tell them to “Trust Us,” they smile and tell us that is like asking GreenPeace to “trust” the oil companies.
They just won’t give up.
Damn, they drive us nuts….
But we know that after we retire and get our pensions, they will still have to be harrassing our replacement because their child will always need someone to advocate for them.
We respect them because we know they force us to do a better job.
We know that when they are helping their child, they are also helping all children.
We love them because their motives are pure and they make the world a better place.
And most of all, we admire them because they don’t give up.”
This is an excerpt from Mary’s blog at Climbing Every Mountain (a base camp for parents and caregivers of people with disabilities).
Thank you, Mary, for your post and for permission to share this excerpt!
If you think about it, our society embraces the upright. You don’t really think about it, you get up in the morning and from that moment most people spend their day, well, upright: walking, sitting, crawling, jumping, etc.
Before having Getty, I hardly gave thought to the fact that some do not have the ability to “be” upright. I never considered that being held at an angle could severely inhibit one’s ability to breathe and/or swallow.
When Getty was first diagnosed with SMA, the only aspect of SMA she was presenting at the time was hypotonia or muscle weakness. When assisted, she could sit upright with no apparent oxygen desaturation. She had no problems swallowing her own secretions or eating.
As the months passed, and well after Getty’s G-tube and Nissen surgery in November 2010, we noticed being upright was becoming difficult for her. With some assistance, she could sit upright, but we were noticing that the time while upright was starting to get considerably less before she became obviously uncomfortable.
We had a few scares of severe desaturation in the month of December. Mark and I discussed Getty’s care together, like we always do, and we decided that we would no longer push her to be upright. We felt that when the time was right we would pursue the upright world for her again, but not right now.
Don’t misunderstand, the laying down world is just as exciting. The books are the same, the singing is the same, and the exercises and massages are the same. Getty just has a different perspective as maybe the upright world has. If you think about it, it really isn’t that different.
However, in my heart, I was dying inside. On some days I had no problem while on others, I felt paralyzed. It didn’t phase me before because Getty was still young enough that I didn’t equate crawling with her milestones yet.
She is almost 11 months old now and other kids her age are starting to walk. So I needed to be able to grieve the fact she would never walk. It is silly, really. I know she won’t be able to walk, yet when I saw kids her age walking, I fell into a self-loathing spiral.
I hate SMA.
Then I experienced a day like today. Let me set the stage. First let me say that Mark will be posting about Getty’s new and unbelievable medical stroller called the Exomotion EASyS. It is simply amazing, so I look forward to that story.
Anyway, so today was the day. My hair-brained idea was to see what would happen if Getty was upright. How would that happen? How would she do? Will Getty enjoy the experience? Are we ready?
After lots of suctioning of saliva with the suction machine, I put Getty into her stroller. It was reclined at 180 degrees flat. The pulse oximeter was secured to her toe to let us know if any oxygen decreased and/or heart rate changed. We attached the bi-pap machine to her little nose in an attempt to keep air flowing into her lungs and to help dry and force out her secretions. We were very diligent and also very methodical about this process.
Once all the numbers were good, we started to incline her upper body by adjusting the stroller. I believe we got about 140 degrees and performed the same ritual of suction and motoring. This process of getting upright took some time and then Getty got to about 100 degrees and we stopped. We stopped and you should have seen her face. She was just beaming with delight. I took this picture after we all celebrated.
So let me explain what is going on the the picture. Getty is wearing her bi-pap mask, her neck monkey is hugging her tight to make sure she is comfortable sitting, and the pink ribbons are part of her arm slings made by Nora’s mommy, so she can have some arm movement while sitting. And that smile and tongue is all GETTY!
Here is a side view of Getty in her awesome stroller looking out the window. The chair beside her is my chair, we spent a good portion of the afternoon reading books, talking about what was going on outside and just chatting like girls do.
I love this picture most because it is so symbolic of Getty’s journey. SMA has come into our home and it has shaken our family foundation. At times it robs us of our dignity and strength; yet moments like this continue to renew our faith, give us hope, and it inspires us to push the boundaries of this disease.
When RSV season is over, hopefully in April, we will be outside that window and experiencing new things with Getty. We simply can’t wait. From Getty’s experience today, she is ready to roll!
Sarah and Rob from Bit of Whimsy Dolls have been so amazing to our sweet Getty. We posted early this month that they were willing to sell their pattern of the Olivia Owl with 50% of the proceeds to go to Getty’s Owl fund for the entire month of February. Tonight they are adding to the already sweet deal. Sarah has willingly made some of the Owls to sell as well, with 50% of the proceeds again going to Getty. They are so incredibly cute! Please check them out and consider buying one or two or three. 🙂
Thank you both for being so incredibly thoughtful and gracious. I know a few of those owls will be making their new home in Sacramento. 🙂
In other news, Mark and I got a chance to get out of the house tonight to enjoy a really nice home cooked dinner with some great “kids.” I continue to be so impressed by their level of maturity at their age of only almost 20. I certainly didn’t have that when I was their age.
We enjoyed great conversation and it was nice to be in a different environment with Mark. We hadn’t really laughed together in a long time. There are already obvious regular stresses in a marriage and in life, but adding in the level of stress in caring for Getty can tap us out in the jovial department. Please don’t misunderstand, we laugh plenty when it comes to Getty. She is very funny and she is extremely captivating, but in the same breath when there are times that you are trying to stay focused and attentive to her every breath, sometimes it is difficult to get a joke out and to actually laugh. I hope this is being conveyed correctly. 🙂
Long story short, we got a chance to get out of the house for a night. Last time we did that together was almost 5 months ago, and we enjoyed it. It gave us a chance to enjoy some couple time and it gave us a chance to refuel. The drive home seemed to take forever, even though the total distance was about 5 miles. We talked about Getty all the way home and how when we got home we were going to attack her with smoochies! And rest assured, she was attacked with all kinds of kisses and squeezes.
Here we are, Wednesday. I am honored to introduce you all to another member of our Team Getty Runners. Don’t forget it is not too late to sign up. Email us at firstname.lastname@example.org and we will add you the list of warriors pounding the pavement for Miss Getty.
Some of our runners are already running races to get ready for the December 4th marathon. It is so wonderful to have SMA awareness already out there! Keep up the good work.
Tonight I introduce you to JoLyn Young.
Birthday: October 4th
Favorite Color: Green
Hobbies: Walking and traveling and watching sports……playing them too!
Have you ever ran a marathon?: I have never ran a marathon, but I was a runner when I was much younger.
I have been married for 26 years to my wonderful hubby. We have been blessed with three children who we miss dearly now that we are empty nesters. The oldest Jaeda and her hubby live in Minnesota. Justine, who is in college playing volleyball at Kennesaw State, her twin brother Jordan, who is also in college and playing basketball in Iowa. We enjoy traveling and visiting our kids and enjoy time with our friends that we have made here since moving a few years ago.
Just in case you missed last Wednesday’s post, I am also adding the Team Getty Runners video with the now famous Miss Mady. “What is holding you back?”
Click on the Watch YouTube link.
Let me start by saying that Mark and I are children and products of the 80s. We enjoy music from that entire time period and we greatly appreciate TV shows from that decade.
Many TV shows and movies of that era embraced the montage. MacGyver wound up in an otherwise impossible situation but with the right music, he could accomplish anything. The Breakfast Club, Rocky, Goonies, you name it, most shows did it.
So tonight, I am embracing my 80s roots and I have made Getty her very own Valentine’s Day montage. I am not known for my movie making skills, but I did the best I could.
Valentine’s Day I am sure, means different things to different people. For us it means just another day that we get to embrace each other and snuggle with our Miss Getty. I remember someone telling me before I gave birth to Getty, “You will never know another love like the love you have for your child.” I couldn’t agree more. I see life with a new lens and I feel like I am living the life I always wanted to, as a mother.
So here is our gift to you, Miss Getty.