Held in the Palm Of God’s Hand: God’s Grace Shown Through the Overwhelming Task of Parenting a Disabled Child
(you've prayed for her, this mama of the baby who battles seizures... here is the story she (melissa devries) has written about her daughter, savanah grace)
My husband and I had struggled with infertility for 8 long years before the Lord answered our prayers on September 5, 2010. He blessed us with a little girl of our own, Savanah Grace. She is now 11 months old.
She was diagnosed with a rare genetic condition when she was 2 weeks old. Physically she was born with no big toes on either foot, a small jaw and small, misplaced, crooked thumbs. Her condition is 1 of five known cases in the world. It is so rare that it has no name, only a genetic “address”of where it is affected on her map of chromosomes. When given her diagnosis, we were told that the doctors and genetic team were unsure as to the extent of her disabilities but to expect psychomotor retardation, sleep and behavior problems, ataxia and mental delays. Confronted with this picture of our future with Savanah, my husband and I were flabbergasted. Both sides of our families were filled with lots of healthy children so why did this happen?
At first we were angry with God. Not only was it so difficult to have a baby for us but now we couldn’t even experience what it would be like to have a healthy child reaching the milestones of everyday life. We grieved for the loss of our dreams for Savanah. I think the easiest way to describe the following months is with the most prominent emotion felt; guilt. How could we even dare to be upset with God, didn’t we cry out to him for a child and yet when he sends us a baby that is disabled we had the audacity to say that it’s not good enough? What kind of Christians were we?
Savanah spent the first 4 months of her life with feeding problems and frequent and at times, constant crying. She had a feeding tube inserted through her nose when she was a week old to help supplement her feedings because she ate so poorly. I hated the sight of this tube because to me it represented a physical reminder of her disability that I wasn’t yet ready to accept. I spent hours feeding her, to prove to her doctors and to myself that this tube wasn’t necessary and that she was capable of eating on her own. When she was 6 weeks old the doctor agreed to let me remove the tube and see how Savanah would fare on her own. From then on I continued to spend most of my days and nights feeding her. At times it would take her up to an hour to slowly drink one or two ounces. Then I would have to keep her upright for 30 minutes because she had reflux and if she was laid down too quickly after a feeding she would spit up the formula, usually through her nose. I was determined that she didn’t spit up what little she had finally ingested. Following her feed she would sleep or cry for about an hour and then I would start the whole process over again. There were many times I felt such extreme guilt during her feedings because I wasn’t sure if I was pushing her too hard. I felt guilt that it was because of my inability to accept her diagnosis and didn’t want her tube fed. Due to her eating such small amounts Savanah didn’t start missing a feeding through the night until she was about 9 months old. To this day, she still has days when she doesn’t eat well and so I will get up in the middle of the night to supplement her. I am obsessed with how much she drinks because I don’t want her to be tube fed again.
At around 5 months of age Savanah developed infantile spasms which led to a diagnosis of West’s syndrome. Prior to these seizures Savanah recognized my voice. She would smile and coo at times and her neck strength appeared to be getting stronger. Once the seizures started she lost these skills completely. Again I felt extreme guilt. Before the onset of her seizures I was so frustrated that all she had learnt to do was smile and coo. I was sad that she wasn’t progressing normally because again it was a physical reminder of her disability. Yet when she lost her ability to respond to me I grieved even harder. Savanah experienced at times up to 10 seizures a day, ranging from 5 minutes to the longest being 3&1/2 hours long. She became a shell of what she once was. She slept a lot and feeding became much more difficult again because any attempt at a type of schedule was always erased after a seizure. I felt so guilty that I had taken her smiling and cooing for granted. I prayed desperately that God would give these skills back to her. These seizures climaxed when she was about 9 months old and she was hospitalized for 10 days for observation while the doctors played around with her medications. These medications had taxing side effects of extreme agitation, restlessness and insomnia. During this hospitalization my husband and I had to make many difficult decisions in regards to the types of interventions we desired for our daughter. We had many discussions and prayers and shed many tears as we talked of quality of life vs. quantity of life. We were given a very poor prognosis for Savanah because she had responded so poorly to the medications administered. We were told that she might never regain what she had lost. I couldn’t understand a God that would answer our prayers for a child with a profoundly disabled baby who we weren’t even sure she was aware of our presence. She was unable to convey any emotions except through crying. We started rating our days and how well she was doing by how much she cried or slept. In other words, if she was sleeping she must be comfortable…and comfortable to us meant happy.
We started physical and occupational therapy when she was about 10 months old. We are encouraged to try to stimulate her everyday, through music and desensitization therapies. Savanah is very sensitive with anything touching her hands. She spends most of the day holding her own hands to prevent them from touching anything else. She is also poor with direct eye contact. We know, through testing and everyday activities, that she can see, but we don’t know how well. I always feel a sense of guilt that I am not doing enough with her. I wonder that maybe if I exercise and play with her more she will learn and become more responsive to the environment around her.
Currently I am happy to report that Savanah has been seizure free for 4 weeks. This has not occurred since she was 5 months old. We can see an improvement in her; she is awake more during the day, feeds better, is starting to eat some solids and even smiles occasionally. At this time she is still around a 1month old development level and we don’t know if that will change or not. We are now dealing with finding equipment for her that will support her body, since she is outgrowing all of the newborn swings, car seats, bathtubs and snugglies and yet still requires all of the body support that these things provide. It’s challenging and one needs some ingenuity to adapt her environment to help her be as comfortable and happy as she can be.
Our goal for Savanah’s life is that she remains pain-free, comfortable and surrounded by love at all times. My husband and I used to joke that we hope our children don’t inherit his language skills and my math skills because then we might as well “spend their college fund”. Now we are more sensitive to theses types of comments. We don’t expect Savanah to be able to attend school, to be able to talk, to walk. We pray that God will grant us a miracle so that she might be able to hold up her head someday. We pray that God will give her body relief from her seizures. That her muscles remain supple and flexible. That she doesn’t develop contractures or bed sores as she ages. We pray that somewhere in her head she is able to comprehend the love that we shower her with. That she feels safe and maybe even recognizes our voices.
It brings tears to our eyes when we think of everything that she is going to miss out on in life. We grieve that we won’t hear her first word, see her take her first step, ride a bike, graduate from school, get married and have a family. We are overwhelmed with the idea that we have to be her parents, her caregivers, her advocates, her best friends, for her entire life. We cannot grasp the concept that this all consuming job will continue until the day we pass away, or until the day she does, whichever comes first.
I am so thankful that we have the comfort of heaven. There will be no tears there, no pain. However, despite the comfort of the knowledge that when Savanah goes to heaven she will become whole and perfect, I have come to think that she is perfect in her own way here on earth too. Sometimes I think that when she gets to heaven God will erase all of her pain and tears and confusion, but will she change entirely? Will she become someone I won’t recognize? Is our world’s idea of physical and mental perfection different than God’s? I feel guilt that I focus too much on her imperfections, on her inadequacies and her inability to reach basic milestones and yet don’t we all have imperfections, inadequacies and inabilities to perform tasks right? Friends and family aren’t always sure what to say to my husband and I. We have been given words of sympathy and promises of God’s sovereignty and the reassurance of perfection in heaven. This has been encouraging yet we still want to hear wishes of happiness and bright tomorrows for this life. Savanah may not be perfect in the eyes of our world and yet we can say that she is perfect for us. We love Savanah with all our hearts and cannot imagine life without her.
As a mother I grieve everyday for what I’m missing with Savanah. Yet I have to maintain a sense of peace that God is faithful. I don’t want to have Savanah’s entire life be surrounded by sadness and grief. I want her to hear laughter and joy. So I try to swallow my tears and tuck away my sorrow and day by day God provides the strength I need to take care of her needs. She has taught our families to be more sensitive, more caring and more aware of everyone around us. We don’t take health for granted anymore. She has shown us that real life isn’t about success measured by money or popularity rather through the growth of grace and hope. Savanah has taught me patience and what true sacrifice and love is, even when it can’t be returned. She has shown me what true motherhood is all about.
We don’t know always what to ask of God in regards to Savanah’s future. We take much comfort with Romans 8:26, “In the same way, the Spirit helps us in our weaknesses. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express.” We cannot always adequately express our sorrows, worries, and fears and yet God is faithful. His beloved Spirit is praying on our behalf for Savanah during these difficult times. We know that she is held in the palm of His hand, what greater comfort for a parent is there than that?!
(please continue to keep this family in your prayers... i am on vacation this coming week in the mountains with my parents and siblings; will be in touch upon my return... bless you.)
