Today I want to introduce you to Christy, the mother of a special needs daughter. She and her husband serve as missionaries.
Karis, now eleven, has the developmental abilities of a six-month-old girl and is completely dependent on Christy and her husband and other caregivers for everything—changing diapers, pureeing her food, feeding her, and transferring her to her wheelchair or wherever she needs to go since she does not stand or walk, and she cannot see.
Christy, I know how intense life is for you. I’m so grateful that you took the time to join me on the blog and help us all understand more about the life of a special needs parent.
Thanks for inviting me to the blog. It helps me to know that my words might help someone else.
So, tell us, what is the hardest part of your role as the primary caregiver for a special needs child?
It is the weight of the constant responsibility that is always on my shoulders. Even if I get a “break” when someone else is caring for my daughter, the weight of responsibility is still on me. Keeping Karis alive and healthy requires twelve or so different medicines and vitamin supplements that can never be allowed to run out. Every day I have to prepare these medicines to mix into her food or go through her g-tube. She is on a medical diet where food has to be pureed and measured to the exact gram. Add to that doctor’s appointments, therapists, changing diapers, and lots of lifting and transferring her to wherever she needs to go. It’s hard to ever get a break because of the extensive training I need to give anyone who would take care of her, and also because, let’s face it, who really wants to volunteer to take care of a 65-pound child who can’t walk or talk and has a lot of seizures. I rarely feel comfortable asking even close friends to care for her because I know how hard it is and that most people are intimidated by even the thought of the task.
In the midst of all the hard days, what do you see that warms your heart?
The best part of my role is hearing my daughter laugh and seeing the rare times when she interacts, in her own small way, with people around her. It is gratifying to understand her grunts, sighs, laughs, and body movements, and to (usually) know what she wants from interpreting her own “language.” She isn’t capable of showing much love, but the times she cuddles with me are wonderful. We usually have a little cuddle time after I feed her, and sometimes she will lean forward in her wheelchair to find me so I can hug her, and sometimes will be calm, rest her head on my shoulder, and go to sleep (she can fall asleep in two seconds.)
Being the parent of a severely handicapped child has also taught me, through experience, about God’s unconditional love.
I struggle to accept that God could love me regardless of how “good” I am or how well I live up to expectations (usually my own expectations rather than God’s.) But I see how profoundly I love my little girl, just because she is mine, not based on anything she can or can’t do, not even based on her showing me love in return. If I, as a deeply flawed human being, love my daughter like that, how much more must God love me just because I am His. I still need this lesson to penetrate more fully into my heart, but having my daughter has helped immensely.
How can a friend best step in and become a Storm Sister to you?
This question is very pertinent in my life right now. After eleven years of the stresses and constant, unrelenting responsibilities of caring for my daughter, my body finally gave in and crashed on me. I was diagnosed about nine months ago with major depression and found that I was not, and still am not, functioning very well at all. So I am very much in need of Storm Sisters to come along side me at this time. I decided to be very open and honest with my friends, coworkers, and boss at work about my struggles because I have known all along that I needed help to get through this, and I wanted a lot of people to be praying and supporting me. I have found very supportive friends, some I was already close to and others that God brought into my life just in the past nine months or so.
One of the main things that they have done for me that has really helped is to stay in consistent communication with me. I’ve found that processing my day through email or texts and having people respond to me, even with very short responses, is one of the most helpful things.
Sometimes I don’t have the energy to take the initiative in communicating so I really value friends who take the initiative to check in and see how things are going. Hugs are really important, too.
I often feel in need of help, but it is hard to ask for it. Having people volunteer without my having to ask is priceless. Even if it is not help with directly caring for my daughter, to have help with making dinner, doing laundry, cleaning the house, or other things like that is still very appreciated.
I have one friend who is wonderful at this. She will sometimes call me and tell me she is bringing dinner over (not asking if I want her to, or when would be a good day, just telling me she is coming), or offer to come over once a week for two hours and help with whatever I need. She even made my son’s birthday cake last year when I was feeling really overwhelmed and didn’t think I could make the kind of cake he was asking for. Now that she has offered so many times, I feel comfortable asking her for specific things when I need help, because I know she is willing and really wants to help in any way she can.
I’ve also discovered that it is very good for me to be able to help other people in some way. First of all, it takes my focus off of myself, which is really important. Secondly, it makes me feel like I’m useful and needed and can minister to others, even though most of my time is spent caring for my children (we have a six-year-old son too) and keeping the house running.
It is hard always to be the recipient of other people’s help, and constantly to feel indebted to others because of all the help they are giving, even though I need it sometimes. It is humbling to admit that I can’t do it all on my own. That humbling process is a good thing, even though it is painful. But it is also very refreshing to feel like God can use me in others’ lives. So being a Storm Sister can and should involve the help going in both directions.
How does your faith help you navigate each day?
There is NO WAY I could make it through without God’s help! I have been learning (although I’m still not great at it) to lean on Him for His strength when my own is not enough. That is most of the time these days. But I’ve seen how He has given me the strength I need time and time again when I had absolutely nothing left and felt there was no possible way I could keep going with what needed to be done.
The hope of heaven is another thing that helps me through the hard times. That promise seems much more real to me now, and when I’m feeling sad or discouraged, I often try to imagine what it will be like to one day see my precious baby girl as she was meant to be—able to walk, run, and dance; able to see; finally able to understand and express herself in words and reciprocate love to others; never having to live through another seizure.
I talk to her about that time, even though it is likely she doesn’t understand what I am saying, and I often remind her that Jesus loves her.
We also talk to our son about how it will be in heaven, and have done so from the time he was a baby. We want him to look forward to seeing his sister one day in heaven, and we want him to know that she won’t be like she is now forever. And since we don’t know how long she will live down here, we want him to know that, although her death will be sad because we will miss her, it will also be joyous because she will finally be whole.
In fact, he is looking forward to that time so much that he sometimes tells me he wishes he could die and be in heaven now because it is going to be so much better! (I tell him that that is true, but that we’d also like to have him down here for a good long time.)
Thank you, Christy. Your words have so touched my heart and opened my eyes.
Dear Readers, would you join me in encouraging Christy this week? For those of you who pray, please ask God to strengthen and encourage Christy in her struggle with depression. Feel free to leave a comment here for her. Or you can contact her through my website. Let’s encourage this dear young woman.