I just wanted to take a moment to journal about Maggie.
While Maggie is making her own progress with development, there is a reality that I often have to visit each day. Maggie is delayed. That fact doesn't make my love for her any less... it doesn't make me wish that she were different... and it doesn't make me sad. It's just reality.
I am in awe of God's creation in Maggie. I know that God knew what Maggie would struggle with in this life. I know God is my strength in helping Maggie. Humanly speaking, though, I do struggle sometimes. I watch as we work with Maggie's speech. We say things like, "Maggie can you say YELLOW?" What we hear is our 1 year old, Elijah, saying yellow. Maggie is 3 and she still can't speak.
Now, let me back up a minute and explain why I am journaling about this. It's therapeutic for me, I guess. I remember when Maggie was 1. We went to a birthday party for another 1 year old. Maggie wasn't able to crawl yet and we watched as most of the other 1 year olds at the party crawled, walked and waddled about at the party. It hurt inside to know that Maggie was struggling. Now that Maggie is 3 I am feeling a little bit of that pain again. Most of my friends with 3 year olds are potty training their kids, they are sharing stories of the funny things they say, and some are even talking about Preschool.
I do have a fear that I lay at God's feet every night. I fear that Maggie will continue to struggle the rest of her life. There is an aspect of reality there. Maggie will most likely need physical and educational support throughout her school years.
Physically she will most likely need to have some ankle supports as her muscles do not have the correct tone to keep her bones in line. Her knees, ankles and hips are very floppy for this reason. So, eventually she will need to wear supports to keep her from having joint problems. We are actually praying that she will really like swimming. That would be an awesome sport for her as there would be no impact on her joints.
Educationally, Maggie will most likely need special services throughout school to help her with curriculum. I am not really positive on that aspect, but I suspect that she will need help. We are currently working with the local school district to see if she qualifies for speech therapy through the Preschool that works with special needs kids.
Now, having said "Special Needs"... that's where a slight fear enters my mind. I have been a teacher and I know the label that gets put on kids that have RSP services. The parents and the students all know who goes to RSP services. Those students do find it harder to make friends. Elementary school can be very hard for kids. Teasing, fighting, learning to be independent, etc.
I know, I know... Maggie's only 3 and already I have her in Elementary school with no friends.
There it is... my fear... my prayer request... the burden I have that I must lay at God's feet. I love my Maggie. I am blessed to have her in my life and I couldn't imagine ONE minute in this life without her.
Just wanted to share a raw moment with the blogging world...
11 comments:
Heidi - I faithfully follow your blog and my heart goes out to you and the fears that you are expressing today. Please know that your precious Maggie will be in my prayers...and so will her special mommy. Thanks for sharing your feelings so that I can help in the only way I know how, prayer.
Love,
Kathy Baird (Dave's mom)
Your honesty is beautiful Heidi. You are saying what every mom in the same situation would say. We all know the "right" thing to say but the reality is life and especially Maggie's condition are hard. I love hearing about Maggie. Her triumphs and successes. She is a go getter. That comes partly from her but it also comes from you. She has less to fear in life because God has blessed her with a wise, loving, patient, caring and thoughtful mommy.
On a smaller scale, God has blessed me through your lives. Watching Him grow Maggie (and you through her) has in part grown my understanding and love of God as well.
I will continue to pray that God would buoy you up and strengthen you for what lies ahead. May His love banish your fear.
Wow! That was long winded!!!
Heidi-I stumbled across Maggie's story while searching for information about mouth muscles. My son, who will be 4 in July, has very little language and we, too, have embarked upon a long and arduous journey to help our son. As I continued to read, I felt as though I was reading our family's story. We have encountered many of the same situations, feelings and emotions I'm sure you all have. I feel as though my 'stumble' upon your story is not a stumble at all, but a blessing. We have felt so alone in this journey to help our son; it is nice to know we are not the only one's out there who are dealing with the obstacles that accompany a child with low muscle tone. Thank you for sharing your story. I would like to hear back from you, in hopes that we can speak. Thank you again, CM Orlando
I will be praying for you and Maggie. I cant even begin to try and understand all that you are feeling. But I have to say reading your stories about her are VERY encouraging and to me she is an amazing little girl who has made HUGE accomplishments considering her situation. She will only continue to do better with parents like you. What a special, loving environment God chose to place Maggie! He knew she needed you and you needed her.
Heidi, as your Mother I feel your fears and pain. If Maggie's story can give hope and encouragement to just one person ~Wow~ that's big.
Thank you! CM Orlando for commenting on Maggie's blog.
We are all here to support Maggie and I PRAY she will never feel lesser then others.
Thanks for sharing your feelings Heidi. As mothers, we so want our children to fit in, to succeed, to flourish. How hard it must be for you to relinquish Maggie and not let anxiety over take you! I am so glad that there is some progress with her. I think it is also very healthy (for you) that you are mourning and hurting for her, and that you express it. I keep praying for you.
What honest and raw thoughts. Thank you for sharing what you are thinking. I have shared very similar thoughts and have to stop myself from going too far ahead in the future with my worries. Easier said than done, I know. Thanks for sharing!
Hi! I am new to your blog. I came accross the link on my friend Andrea's blog. Anyway, I just wanted to say that your daughter is beautiful. My son is 4 and has hypontonic CP. Your last post really touched my heart. I feel like that a lot too. Feel free to check out our blog http://blayneferguson.blogspot.com/
Heidi
I so feel your emotions right now. As I read this entry it feels like what I go through every day. Some days are very bright and some days I do get a bit sad. But you are right. This is reality.
Thank you for helping me see that everything we go are going through, although is hard, is also happening to others. And others who understand!
Jen Dalton
Heidi, we have similar fears for Micah but for different reasons. He has glasses and a severe food allergy. As parents we want to protect and preserve our children! Hugs!
I hope you see now that your fears of her having no friends were not necessary! Maggie was loved by pretty much everyone in her class! Everyone was kind to her, a friend to her, and I truly believe that she helped them to be better kids for knowing her and her kindness.
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