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.
This picture was taken the day we got home from the hospital. Getty was three days old and I was three days into being a mother. I think what is very special about this picture is that neither of us knew much about each other. I knew nothing of being a mother. Getty knew nothing of being a human being. But here we were, two tired ladies sleeping peacefully next to each other as though starting this new life together……..after the nap of course.
Since this picture, our position has not changed. I still sleep on the left and you have the right. Our bed is a little bigger, yet you still find a way to take over the entire queen bed.
You are my daughter and I am your mother, but I truly feel as though those titles do not come close to explaining the bond we have with one another. We are partners in crime, truth be told. 🙂
I love being your companion. I love the way you greet me with a smile in the morning and the twinkle in your eyes right before you go to sleep. I often stay awake just to watch you fall asleep. I also find that instead of napping with you, I stay awake to listen to you sleep. I enjoy watching you explore your world and I am so proud of all that you have and will accomplish.
Selfishly, I do have moments of sadness, thinking of what this disease has taken from me as a mother. I wish I could pick you up and hug you and swing you around, but I am more than happy with laying next to you or holding you up just long enough to give you a little kiss. I wish we could walk together, holding hands, but what I do get to do instead is receive your sweet love taps that you give when we hold hands. When you caress my hand it warms my heart and takes away whatever “mommy need” I thought I was missing. There are moments that I long for us to have a conversation, but instead I get to hear your giggle and I get to experience your snarky/sacratic personality. Getty, you have impeccable timing which leads me to believe you know exactly what is up and it is up to me to figure out how you have made a joke, perhaps at my expense. 🙂 I’d take that over any silly conversation.
You are my world and I thank whomever brought you to me, every day. You have brought so much to my life; you have made me a better person, you have made me mother.
I thank you for giving me a different kind of purpose to life. A different perspective on life. An enhanced passion to love.