After a long day at work, I come home weary, change, wash up, and then it happens. I quietly stroll into Getty’s room and see her lying peacefully in bed. The feeding pump softly churns. The vent whispers and hums. I admire her steady rhythmic chest rise and fall. She is content and healthy.
I feel a subtle sense of gratitude to all those who took the time and effort to provide all the specialized things Getty needs just to be with us. More importantly, I appreciate that Kate has delivered Getty yet another good day.
She has recently awaken from her nap, and she watches her animated shows intently. On occasion, she hoots and giggles at her show. I take a moment to stand behind her and just listen.
It’s as if she’s talking to the characters, laughing at the silly things they do, maybe singing with them. Sometimes, she belts out a holler, echoing through the entire house. Maybe she’s trying to tell them what to do, with sass. She’s good at that.
SMA has robbed her of the oral skill to form clear words. It has robbed all of us of truly hearing what she has to say. Honestly, that pains me at times, but I try not to dwell on it. I look right past her limitations and see a beautiful little girl. I delight in her chirps and take fatherly pride in her bellows. “The kid’s got lungs!” I think to myself.
I get close and slowly inch my face into her view. Her eyes dart to meet mine, and the whole of her face beams with a genuine and loving smile. She can’t say, “Daddy’s home!” — but she can.
I give her smoochies all over and provide the hugs I’ve been saving up. I move her arms and legs about, clap her hands, have her pat my cheeks and honk my nose. She laughs and laughs and laughs.
I settle her down and back away. Her eyes and squeals insist we “Keep going!” We give it a few more go ’rounds, and love it!
These are the kinds of moments that warm our hearts and invigorate our souls. These are the little things SMA Dads do.
Cherishing, laughing, playing, kissing, bonding, and loving through it all — these are the things Dads do.
Happy Father’s Day!
Father’s Day is coming up on Sunday and I wanted to offer a new and fun suggestion for families to take part in. We all know that your dad is a superhero and so honor him by running or walking in the Superheroes 5K this Sunday at Capital Park in Downtown Sacramento.
Our friends at Capital Road Race Management are putting on a great race to honor dad!
Getty and I will be honoring Mark that morning. All three of us will bundle up, put on our capes and walk the route in honor of Getty’s awesome daddy.
CRR has also been extremely gracious and offered all participates that enter the code: Hoot $2, from each registration will go straight to Getty Owl Foundation. Thank you guys for thinking of us and your continued support.
We hope many people come out. What a great way to honor dad!
If you know you cannot make the event, but would still like to donate we have set up a fundraising page to help meet our goal of raising $1,000. Help us blow this out of the water! Donate HERE!
I am ironing Getty’s cape tonight. A superhero needs to be ready to go at a moments notice.
Since Getty’s diagnosis and later the creation of Getty Owl Foundation, I have felt as though my heart has really been focused on SMA awareness and helping families. I want the world to know that what has graced our family can happen to any family.
1 in 40 are SMA carriers, which is roughly 11 million people in the US that most likely, are unknowing carriers.
SMA is the #1 genetic killer of young children.
1 in 6,000 births are to a child with SMA. 60% of those diagnosed is to the most severe type: Type 1. Getty is type 1.
SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.
So why aren’t people flocking to a genetic counselor to get tested to see if they are carriers? Why is SMA carrier testing not part of standard of care? I mean, did you see the statistic of 1 in 40? Isn’t that enough to raise an eyebrow of curiosity to see if you are a carrier or, in the very least, educate yourself, your family, and/or your children?
I naively assumed people would flock to get carrier tested. I am sure some did, but my guess is that most have not. If this gives you any indication to why I think more people are not is because our own family members have not gotten tested.
None of them.
SMA is genetic. It lies in my family as well as Mark’s family. It lives among all of us in certain regards, not just with Getty.
We receive lots of feedback in general since creating the foundation. We get lots of great questions and have an overall terrific dialogue about SMA.
There are a couple of common remarks that keep popping up that I wanted to share:
-I couldn’t be a carrier, I have healthy children.
-There is no family history, so there is no way I could be a carrier.
-Maybe I am a carrier because there is muscular dystrophy in my family.
-I am a super active person, no muscle weakness, I am not a carrier.
Let me offer responses to these comments to help dispel any misinformation.
-Having healthy children does NOT mean you are NOT a carrier. If both parents are carriers, you will always have a 1 in 4 chance of having a child with SMA. There is always a 25% of having a child with SMA with each child.
-We have no known family history either and in the vast SMA community, we know of only two families that actually knew of any family history. If you go back far enough there may be a misdiagnosed SMA case in a family without even knowing it. SIDS could easily be an SMA case. Again, had I placed Getty on her tummy overnight, Getty easily could have suffocated with her diminished lung capacity and could have become victim of SMA without even knowing that there was something bigger going on. Had Getty contracted pneumonia before diagnosis, the acute care that is needed for a child with SMA might have gone unnoticed and she may not have made it through a sickness.
-Yes you should be carrier tested, but having history of MD in the family linage does not mean SMA is or is not present. SMA is its own recessive gene.
-SMA carriers are asymptomatic. This means carriers have no SMA symptoms.
So where am I going with this, other than trying to convince more people to get tested?
During Getty’s MDA clinic appointment a few Monday’s ago we got a chance to meet with our family’s genetic counselor. They have been a terrific department to work with and they continue to help us with Getty’s ever-evolving dietary needs. In this particular meeting we asked about genetic testing.
I wanted to take the genetic carrier test offered through our health care provider by the company, Counsyl. This carrier test covers over 100 possible genetic conditions/diseases.
There were a few reasons I wanted to take the test. One was purely out of curiosity/education. If it came back that I was also a carrier of other genetic conditions, I could alert my entire family that they also might be carriers of each or all of them. Another reason is because Mark and I have not closed the book on possible other future children. The more education we have of our genetic make up, the more informed decisions we could make. Only I was tested, not Mark. He would have only been tested if something came back positive from my test.
We paid out of pocket; insurance did not cover it. This, however, does not mean that all insurances plan will not cover it for others; but ours does not.
Our genetic counselor got the test, registered the test in my name, and handed it over to me. It took about ten minutes to go from, “I would like to be tested”, to, “Here you go, I will get you the results when they become available to us.”
I brought the blue box home and was actually excited to get started. The home test involves just collecting your saliva in a vial and mailing it off to a lab.
Oddly enough, I ended up not doing anything. In fact, I left it in a room and ignored it for several days. I would pass by it once in a while and I started to question whether I wanted to do it or not. Then something hit me.
Is this why many people do not get carrier tested for SMA and/or other genetic conditions?
Is it better to just not know?
Is there comfort to be out of sight out of mind?
Is it too emotional to know that one might actually be a carrier of a genetic disease/condition?
Many of those emotional thoughts did run through my head. One of the tests was for SMA. So I knew for a fact that I was a carrier to at least one, but what if I was a carrier of more? What do I do with this information, other than letting those in my family know that I am?
So after staring at the test for a week, I finally took it. I mustered up enough saliva to fill a tiny vial. I mixed two solutions together in the vial and packed it up in a pre-paid Fed Ex package to be easily shipped out.
Then the wait began.
I got the call yesterday and the Counsyl test showed I am not a carrier of any genetic diseases/conditions on the list, except SMA.
I was relieved.
I am glad I took the test. I am glad I know more about what lies in my genetic code, or rather, does not. This can only help educate my family linage.
There is an emotional aspect to getting tested. The phrase, “ignorance is bliss” seems to hold some weight I think in this department. I mean here I am, a known SMA carrier, with a child with SMA, and I even stared at that box for a good week before I just “went for it.” But now that I know, I feel empowered, and now I can educate my family. Education does feel powerful.
But boy that was not easy.
Dreams come and go in our house. Mark and I have been haunted by all kinds of scenarios of Getty’s health since her diagnosis. Usually we can shake off easily, while other’s linger.
Some are absolutely beautiful and they have such a strong theme of hope. Dreams of Getty walking, eating by mouth, watching her talk in full and complete sentences, seeing her stumble and fall, only to dust herself off and run towards us. The beautiful feeling of a huge hug from our little lady and trips we would go on that have no machines attached. They are all beautiful dreams that sometimes in truth, I wish I could sleep just a little bit longer to see what else the dream brings to me. A dream I had the other night was celebrating Getty’s high school graduation. I wish I can describe the sensation I felt watching our little lady accepting her diploma. Physically I could not see how she accepted it, but she had the paper in her hand and it was magical.
And then there are other dreams that keep me up at night. It is a scary hospital stay. An emergency ambulance situation. A look in Getty’s eyes that something isn’t quite right. I could keep going on with examples but they get scarier and scarier and it just isn’t worth my heart to notate them here. But trust me, they are scary. But I embrace them, instead of pushing them to the psychological side. I need to realize and understand that they will come and stuffing them might make them even more unbearable. But they do shake me to the core.
Getty’s yearly MDA Clinic check up was coming up and wouldn’t you know it the bad dreams started coming on like a fountain of dread.
I was restless pretty much every night for the month leading up to the all day appointment. It is not so much the appointments I dread, I think it is more that I realize how dependent I have become on our safe bubble we have created here at our home and in the community for Getty. She thrives here. She is not spoken to as if she cannot think for herself or rather not be able to hear exactly what is being spoken about her. Getty is the center of our world, not a number and not a patient. I wish some doctors could understand that aspect.
So I simply do not look forward to these appointments. It is kind of like a necessary evil. Evil sounds extreme, but it is not pleasant.
It is an all day appointment that gives her a chance to see all of her doctors. A little bit of probing and minimal prodding, but mostly a lot of discussion about how great Getty is doing. Mark and I always have our list ready to go with all of the questions we have for all of her doctors and we have answers for all of their questions.
For that full day, Getty turns back into a patient and not my daughter. I hate that feeling. I hate the feeling that it is possible one of her doctors is going to throw us some kind of curve ball of information that we have never considered, which never happens but still the possibility is there. I worry that someone in their infinite wisdom will say something that will make me feel defensive or upset.
But we lucked out and the appointments went well and even though it was long, it was positive and relatively “quick”. Getty remains strong in the respiratory department, which we are over the moon about. Diet is on par. Overall not much has changed since they saw her from last year. I can’t tell you how great it is to hear, “she looks great”, “keep it up you guys”.
Getty needs some blood tests drawn for her diet, a chest x-ray to evaluate her lung capacity and an x-ray for scoliosis. Getty wears ankle braces to keep her feet in a neutral position and to try and minimize the chances of contractures. Knees also look good as well as her hands and fingers.
Overall we are so blessed and let’s face it, lucky. SMA, if I have not mentioned before, SUCKS! I have come to find that there is no rhyme or reason to this disease. Parents can do everything right and still SMA will attack their child in certain ways, while other children seem unscathed for the time being. I think that is why we seriously hold on to every day and embrace the here and the now. Mark and I are clearly aware that Getty’s health can change in a moment’s notice, but at the same time we need to live life.
It is not fair, it will never be fair, but we are just doing the best we can and so are so many families in our shoes and for that matter I would suggest any family with a medically fragile child. We all just want our kids to live and love life, even with this ridiculousness diagnosis and prognosis.
My advice for ANY family is to seriously take life one day at a time and embrace every ounce out of it. From sunrise to sunset there is so much love to give in all of us. Don’t reserve it, give it. That is all your kids want, that is what they thrive on.
As I step down from my soap box I have one more piece of advice for any parent. I am well aware that our lives could be considered different from a “normal” family setting. But our theme is the same.
We are all parents. We are all tired. We are all being pulled in all kinds of directions. We are all under some sort of stress. I would never compare someone’s stress to another, it is just different. Marriage is difficult. Single parenthood must be amazingly difficult. But here we all are, adults with children. We have the ability RIGHT NOW to make sure our kids know we love them.
Getty doesn’t care that I grieve as a mother. She doesn’t care that I am tired in ways I never even imagined. She doesn’t care that I would love nothing more than to have a moment to drink a cup of coffee without an alarm going off. That is not and should not be her burden to feel. That should not be any child’s burden to bear.
All she feels and sees is love from her mom and dad. All she sees is our silly, smiling faces. All she feels is her dad’s warm hug and his voice singing to her at night. Getty is surrounded by people that love her to the moon and back. Getty feels safe and secure.
We are NOT a perfect family by any means, but since Getty’s diagnosis, we were hit with a hammer to the head to teach us that everyday counts and I think that lesson should be learned and practiced by any parent, regardless of adversity. Love is free, love is contagious, love feels amazing. Imagine what that feels to a child.
Let’s keep spreading the love.
Off soap box.
This past month has been really busy for our family. RSV season is pretty much over and so we have been trying our best to take advantage of the good weather and “safer” conditions. We made a couple of fun trips to Calistoga and an SMA picnic.
Our first destination was to Calistoga. It is a lazy town that has nice weather and a nice laid back feel. Mark and I do not drink wine, so while most would take full advantage of the wine country, as people should, we found a lot of enjoyment just hanging together. Snuggling, watching movies, eating in, and venturing out to check out the town was true fulfillment.
In true form we had to headed out to their town’s museum. We found lots to see and lots of things Getty could see. I am still surprised how often most places do not accommodate people who cannot walk on their own, but we lucked out. No one was in the museum that morning and so we ended up getting the VIP treatment and learned about early Calistoga, which was right up Mark and my history alley.
For Getty, they had a handmade doll house that was “off the hook” for her. She loved seeing all the rooms. Each room was painted a different color and each room all the trimmings. Getty loved it.
We ventured out one night and had dinner. Brannan’s Grill was so accommodating, which made for a very pleasant dinner. When we do go to a restaurant we try and call ahead to see if there is enough room for Getty’s’ stroller, and if they have easy access in and out of the place if we need to make a quick exit out of the building. We also consider where we sit. We were hoping for a side table and they were terrific having a perfect table ready for us when we got there. So if you are ever in Calistoga, have dinner there — good people, good food.
This trip really gave us all a chance to regroup and reconnect. Life gets busy, life gets overwhelming, life is ever evolving and I am so thankful that Mark and I have really made a commitment to make these trips a reality. Getting out of the house, packing up the van, making sure that we have not forgotten anything, and planned for any and all worst case scenarios, is completely worth it.
This past Sunday, we had a terrific time meeting up with some great SMA families. I would like to call it a play-date, but since play-dates aren’t really in our vocabulary, this is the next best thing. We had a blast and we were so excited to meet some kiddos and their parents that we have only communicated via phone or Facebook.
The weather was terrific at Mickie Grove Park in Lodi. We would like to thank the Geopperts and Nana Teri for making this day happen. It is very hard to get together with other SMA families. We don’t live right around the corner. Traveling and making time and arranging it around naps makes it overall difficult.
For me I could not wait to just be in the presence of fellow warrior dragon mamas. I also could not wait for Getty to meet, for the first time, Miss Cambria and Mr. Cash and hang out with her friend, Kaige. I love to watch the kids interact. I will say this, Charleston Goeppert is a charming and witty young man. Getty was smitten and could not take her eyes off of him.
It was great to spend time with Heather and Paris (Kaige’s mom and sister), Danielle (Cambria’s mom), and Nana Teri, Ashley and Cameron (Charleston’s nana, mom, and dad).
Lunch was terrific and we had a great time at the zoo and just having time to hang out and relax.
I will take a day spent with another SMA family any day of the week. It is an immediate comfort and understanding. We have all had our lives turned upside down. We are all living a new normal. And what I think it the most beautiful aspect of all of the families we spent the day with is that regardless of diagnosis, they are living. They love their kids so incredibly, they fight everyday to make sure each moment is embraced, and they see a beautiful future for their children. It is a beautiful environment to be in the presence of and it sure fills you up to keep fighting the good fight.
RSV season is technically over after Memorial Day weekend, this weekend to be exact. As a family we are really looking forward to more play dates and more adventures this summer. The twinkle in Getty’s eye gets even brighter, every time we head out for another trip.
So we are currently plotting our next adventure.