When your child is sick, nothing really matters. We rush to her or his rescue to soothe and to calm and to instill peace inside this precious soul. We do it every time, no matter how minor a scratch or a complaint could be. Our child is our Universe and we revolve around it for the rest of our lives.
But when the movement in this Universe has been sabotaged by the internal illnesses inside the little’s body, we know exhaustion no more. We do all and everything to support and restore the movement inside our precious Universe called our child.
This is Sara McGlocklin way to share her journey on the path of being a caretaker for her sick child.
Gain new insights from this sharing. Learn little gems that come from a mother who has been through experience of dealing with pressure under gruesome circumstances.
No one wants to hear “we found something serious with your test results,” especially when the test results are connected to your child. When we received the news in February that my 18-month-old daughter was dying, I did not know what to do. While she is not actually dying right now, she does have Niemann-Pick Type C (NPC), which is a fatal, progressive childhood disease for which there is no cure. Nonetheless, I couldn’t come to terms with the fact that she is right here, with me at this moment, painting at the table, smiling, laughing and talking to me – and that this same girl, without a cure, would one day be unresponsive, immobile, unable to talk, smile, or move.
You think, things like this happen, but they’re not going to happen to me. Or you say…maybe we’re worrying too much, we should be more positive. And then the very thing you don’t want to see happen, happens. So, now, you have to face reality and understand that you have to make one of two choices.
Forgetfulness will begin and will lead to dementia —children forget how to read, how to write, and patients can forget when they’ve eaten and where they are.
One, do nothing, or two, fight it. We chose to fight. Or, I should say, Marian is fighting. Because, I also realized this isn’t happening “to me,” this is happening to Marian – my little daughter who is filled with sweetness, love, and is a happy and “normal” two-year-old for the most part. This is her life that she is fighting to hold on to, and she is part of our family – and we are hers – and she needs us to be strong for her. That’s how it feels on a good day.
=So what does Marian’s life really look like on a daily basis?
• She does physical therapy twice a week
• Occupational therapy once a week
• Speech therapy twice a week
• She goes every other Friday for an experimental treatment that is injected into her spinal fluid under anesthesia to slow down the disease. For three months we’ve had to travel back and forth from Los Angeles to Chicago to do this treatment.
Our other daughter who is four-years-old does ballet, swimming, preschool, and to top it off, in July my Family Medical Leave expired and I returned to work part time as a courtroom foster care attorney with a caseload of over one hundred fifty children counting on me. Needless to say, it’s been very busy, and, it can be really hard at times.
Give Love to Your Little Voice Inside
Now on top of all of this current pressure, I still have to deal with this small voice in my head telling me…moms are not supposed to fail. Moms are supposed to hold it all together. However, what comes as a slow surprise is, you don’t really know how to not fail sometimes, at least I don’t. I feel like I’m failing all the time, even though at the same time I am doing all that I can – including trying to build in time with each of our girls separately to slow down and just enjoy life with them together.
Spend More Time With Your Family, Less Time Cleaning Your Home
My house isn’t clean enough. I’m ten to twenty minutes late everywhere I go. I lose my patience, and sometimes I only have time to give my kids slices of cheese for a quick snack (aka a lot of times).
This wears on you, as it would on any working mom or any caregiver. And, while I can’t spend seventeen days at a spa retreat, what I can do is always aspire to do what feels fair, right, loving and grateful.
Ask for Help Even When You Think You Can Do It by Yourself
I am no stranger to asking for help, and the most wonderful feeling has been when we felt ourselves falling and a support system we didn’t even know was there caught us. I try to do everything I can on my own, and when I feel myself starting to fail, I try to reach out or accept support. Every now and then, our babysitter comes over to play with the kids, and I just take a moment to simply sit down at home. It’s the best.
Focus On What You Have
My mind is constantly racing telling me all the things I haven’t done, that aren’t good enough, that could go wrong. I try to tune that out. I try to be happy. Our life is challenging, and has been for some time, but it’s also very beautiful and joyous. I focus on what we do have, and not what we don’t, and I feel deeply grateful for every ounce of that. There really is so much good, even though it doesn’t feel that way sometimes.
Join in the Conversation of Finding Cure for NPC
— Celebrate Woman (@DiscoverSelf) November 6, 2017
My house might not be the best, I always forget “share day,” and my hair hasn’t met a blow dryer in a long time, but that is ok. It’s worth it. And when all else fails, I think of my great aunt Elsie and her favorite expression, “it should not get worse.” And if that line of defense fails, I shut off my phone, watch reality TV and eat chocolate.