This is the last post of my back history and after this I can begin to blog about life in the present. This has been so helpful to relive this experience. One of the leaders of our church gave a talk in our general conference from Salt Lake last month and in it he said that keeping a journal helped him to see the hand of God in his family's life. He began to recognize the things that he might have missed if he had not been recording it. I feel so much the same way, and it was actually his talk that inspired me to start this blog. So as I bring you up to the present, I do it with gratitude in my heart for all that the Lord has done for me as I have traveled this road.
I failed to share this earlier in my posts because I felt like it would sound to preachy to those who might not be of my faith, but as I think about it it is merely evidence of the fact that God hears and answers our prayers. The experience is this:
Shortly after finding out about Grace's issues, I found myself on my knees frequently. In the past, I have searched for comfort in the scriptures. One night while I was on my knees, begging for comfort that Grace would be alright, I decided to open the scriptures randomly and see what I might be guided to read. The verses I opened to read: "Verily I say unto you my friends, fear not, let your hearts be comforted; yea, rejoice evermore, and in everything give thanks;
Waiting patiently on the Lord, for your prayers have entered into the ears of the Lord of Sabaoth, and are recorded with this seal and testament-the Lord hath sworn and decreed that they shall be granted. Therefore, he giveth this promise unto you, with an immutable covenant that they shall be fulfilled; and all things wherewith you have been afflicted shall work together for your good, and to my name's glory, saith the Lord." This was a revelation given to the saints in the early church, but as we know the scriptures can be applied to us today.
I have read and re-read this scripture countless times. It could not have come at a better time and I have received such strength from its words.
I know that it does not mean that Grace's disability will be cured or taken away. I know that it means that we will be ok. I love the part about it being for our good and to the Lord's glory. It has been exactly that and I know it always will be. We have a beautiful spirit entrusted to our care. She deserves to have a good, happy life. She wants to be loved and cared for just as much as anyone else. Her disability did not take that away. In addition, I have two other children who deserve a good, happy life as well. My husband and myself deserve the same. I can't let a defect in a mortal body steal those fundamental needs and wants. I am the type of person who wants to be happy. If something is happening in my life to make me unhappy, I will fight like heck to get back to happy again.
Right before Grace began having problems, I was kneeling in prayer one night. I was overwhelmed with a feeling of gratitude for such a great life as we were leading at the time. Grace was the sweetest baby, McKay and Alexa were doing so well, and our lives seemed charmed. I remember thinking, it is almost too perfect. I hope it never ends. When is the other shoe going to drop? When will the trials start? Shortly after that, they did start.
The other night- five years after that experience, I found myself thinking the same thing. I can be as happy as I was prior to having a child with a disability. I am as happy as I was. It took a while to get here, and it took a long struggle, but I am here.
As I became more involved in the Angelman community, I found friends, insight, help and support. Those were the things that pulled me out of my hole. Every parent of a SN child needs to be with other parents in similar situations. It helps so much, that I dare say it is requisite to coming to the vital acceptance stage.
Grace now attends school a half day. She has been going since she was three and loves her class. She gets therapy at school and does lots of inclusion with the pre-k class. She does private physical and occupational therapy in conjunction with horse therapy every week. She gets private speech therapy as well. There are things that are still difficult, like her crying when she wants me or wants to communicate something and her lack of speech stops her from being able to. She pulls my glasses off several times a day, she pulls hair sometimes and throws her toys when she is through playing with them. She bites her hand when she gets frustrated and puts her hands in her mouth alot. Along with the drooling, it can be a futile effort to keep her dry. She is still not walking and getting bigger and heavier to carry. These are small inconveniences compared to the ways she blesses our lives.
She loves to laugh. She recognizes songs on the radio she likes and giggles when they come on. She loves it when you threaten to tickle her and come to get her. She giggles and puts her foot up as a shield. She squeals and giggles when she sees someone she likes and crawls to see you. She puts her arms up to be picked up and loves to cuddle. She gives great hugs even though she hasn't learned how to put her arms around people yet. She just puts her head down on your shoulder. It is so cute I could die. She crawls up to you and puts her head down on you or gently rubs your arm or leg. She loves crashing or banging sounds and they can send her into fits of giggles. She loves to watch the funniest home videos show and see people crash. She has one word:"HI" and she uses it a lot. She says it to strangers walking by and it is so cute. She patty cakes and high fives with the best of them. She does the sign for more and claps very well. She loves Blues Clues, Dora, and Elmo. When you start one of her favorite videos- she squeals with delight. She bounces to music and smiles. She laughs at jokes and we can't figure if she really understands them, but she sure seems to a lot of times. She will walk with you if you hold her hands, and if she sees someone or something she likes, she will almost take off without you. She loves babies and will get nose to nose with one and giggle. She gives the best open mouthed slobbery kisses. She loves it when I say her prayers for her as if I were her, she smiles and squirms with delight through the whole thing.
I will be able to share more wonderful things about Grace and about our lives with her as I make more entries, but for now, I need to go to bed.
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1 comment:
Jenny,
Thank you for sharing your beautiful story. I am so moved by how God has worked in your family. Your description of Grace's joys brought tears to my eyes.
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