I would do anything to hear those words spoken to me by my daughter. My journey with Grace began when she was 13 months old and still not pulling herself up to standing. I thought there might be something wrong, and our pediatrition agreed. Currently Grace has had 3 MRI's- and if you have a little one who has gone through this- it's very scary. She had to be put under anethesia all three times. She did fine, I did not. The MRI concluded that she has old scar tissue in the middle of her brain, thus hindering her speech and gross motor development.
We started with the Early Intervention team in our county and were blessed by the most wonderful therapists that offered in home therapies until the age of three.
Leukodystrophy, Brain trauma, Autism, Severe Needs, Special Needs, Non-Verbal...these are words spoken daily in my house. Today, we still do not a have a formal diagnosis.
Some days are better than others, for all of us. Some days my capacity and patience is amazing, others, I am overwhelmed and just want to run away.
I want to be able to use this blog to vent, meet other parents in the same circumstances, and maybe teach others what true life is like with a real family and our sweet, sweet Grace.
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Ah Shannon, you are an amazing mother and woman! I could really learn a lot from you! I am so happy you are doing this blog...good for you, and your sweet Grace!
ReplyDeleteIT is so hard having a child that isn't "like" the others. I know. I fight with it everyday, all day long, wondering if my child will ever be able to be in a room without me and be ok. I know that Gracie has different issues, but it doesn't really matter. IT is a struggle, and it weighs on our hearts. I don't know what to say, but I will follow you here, in hopes that it helps you.
ReplyDeleteI do often write about mothering woes also, on my blog. I have to let it out somewhere, and I have already met another woman, mother, that has a child much like my K, and with same diagnosis. This is a great place to come, and seek out support!
My neighbors poor baby isn't doing well. She isn't developing at all. They don't know if she will ever crawl or walk now. But what a delightful child surrounded by love from her parents and sister.
Shannon, you inspire me! The journey through the mountain range can be difficult. However, with every hill, mountain or peak you conquer there is always a beautiful valley to look down upon. I look forward to reading your experience and hope that you know you are not alone. Grace, is so blessed to have a mommy like you...to think of it all 3 are so lucky to have you.
ReplyDeleteYou almost had me in tears. I love you so much and you precious adorable Grace (the entire family actually). You are the best friend I have had in a long time. You have taught me how to be a better person and mother. You inspire me. You are the greatest mom I have ever met. I hope you continue to write on here. I would love to take this journey with you and Grace. I may be far away but I am close in heart.
ReplyDeleteShannon - I just talked to your dad and he forwarded me your blog. I want you to know that our son, Jeffrey, is now 29 yrs. old. Although we started the process through special education with him at age 3, he wasn't officially diagnosed with autism until age 13. Sometimes not having a diagnosis is the hardest...the not knowing why they are, or are not, doing things...or why they are acting certain ways is the hardest. And yes, as someone said, the fact that they may look "normal" but not act "normal" (whatever normal is!) is a very hard thing to go through. I hated the "looks" by people who didn't know why he was acting the way he was, brought me to tears many times. I have to tell you that as you go through this journey you will meet wonderful, caring people, that you never would have otherwise. Although it is a journey I would not have chosen, John & I, as his parents have been blessed over and over again. We are better people because Jeff is our son...and I say that with great pride! Let me assure you, things do get better! Those early years were sometimes horrific, but I can say, life is good for us and for Jeff. He now holds down a 40 hr./week job with a job coach..he is a productive young man. We send our love and our best to you and your family....and especially to Grace!
ReplyDeleteJean Nowa