If you were diagnosed with something specific...
would it make life easier?
If I knew exactly what causes you trouble and delay...
would it make life easier?
If I could read a book, or search the Internet with specifics...
would it make life easier?
Sometimes I wish I could label you.
Not because I want to, but because it would be easier
to explain you and understand your life.
would it make life easier?
If I could read a book, or search the Internet with specifics...
would it make life easier?
Sometimes I wish I could label you.
Not because I want to, but because it would be easier
to explain you and understand your life.
But then I think about how God wants to use you in this life. HE wants to be given the Glory for your successes.... HE wants to be consulted first when we feel concerned for your future... and HE wants us to remember that He gave you to us for a purpose.
No label will change our love for you. No label will change our desire to help you in every way possible. And no label will allow us to grow closer to God.
Your life, baby doll, is what brings me to my knees more often than anything else in my life. And I praise God in this storm because I know He loves you more than I ever could-
and that love must be VERY BIG!!!
Happy 5th Birthday, Maggie!
11 comments:
I caught up on the archives after stumbling across your blog. Did a google search for hypotonia on blogger. It has been eye opening.
Happy 5th Birthday Maggie!
O Heidi, such a beautiful post. You're so right, how we are brought to our knees when we've reached our limit with our children....
You must have had a some trying days- I pray you will always experience God's loving kindness in the midst of it all. Love you, friend.
Heidi, that was beautiful!
God has made you so strong in you love and protection for Maggie.
Love Mom and Dad
hello heidi... my name is shenia. i have a 10 month old with a very extreme case of laryngomalasia. his doctors have said he is hypotonic, and he goes to physical therapy. i cant help but see a piece of my future as i read your blog! i was wondering if you might email me, so i could ask you afew things? like when maggie outgrew her laryngomalasia(stopped making the sound when she was breathing)?? God bless you and your family. thank you for sharing this with me, Praise GOd for maggie and her story! my email is sheniarose@yahoo.com
your blog has helped me so much..I have a baby 13 months old with hypotonia and global delays..thanks for sharing!
I came across your blog when I googled hypotonia for a friend of mine, to better explain to her what my Conner has. Its great to see someone else out there that has been dealing with what I have been through also. My Conner is 5½ years old, and has Benign Congenital Hypotonia. He walked at 2½ years old (developmentally 18 months) and was delayed in all other aspects as well. He is now 5½ years old, goes to preschool, is in speech therapy, and like Maggie has been doing everything on his own timeframe, no one elses, and continues to amaze me everyday. I will definitely add your blog to my blog list to keep reading on how Maggie is doing. =)
My heart is full to overflowing with love for this precious little "lovebug". She never ceases to amaze. You are doing a wonderful job in guiding her life, through your trust and faith in the Lord. Blessings on you, Heidi, as you continue to nurture in love.
Beautiful post, Heidi. I also just read "The Lump in my Throat" and thought the same. We serve a Big God who has great things in store for sweet Maggie, don't we!!!
Hello Heidi....
You have a beautiful little girl. I came across your blog as I was "searching the Internet with specifics..." as I have been doing for three years. I have a beautiful three year old boy who has hypotonia and, therefore, developmental delay. Your "Would it be easier" entry really hit home for me and I felt comfort as I read your words knowing we are not alone in our battle with hypotonia. Watching our little boy struggle for strength and waiting for skills to come is torture. We too are without diagnosis despite three years of doctors, specialists, and test, after test, after test. I crave a diagnosis for a clearer picture of what might be in store for our little guy in the future. Along with his hypotonia, he has also had numerous medical issues that have arisen in the last three years.
And so the journey continues...
Thank-you for sharing your story.
Hi, Heidi. My name is Emily and I am a sophomore in college and also have a lot of muscle problems. I don't have a diagnosis either. It's very frustrating and sometimes gets me down. This post made me cry and realize just how often I do look away from God and just want to know all the "why" and "how" and "what" answers. So, I thank you. (I stumbled across your blog searching for other cases of hypotonia. Keep up the blogging, may God bless you and Maggie. I know what it feels like to go through life never really knowing. It gets hard, but you soon learn that there are others far worse off and loved ones that couldn't care less.)
Hi, Heidi. My name is Emily and I am a sophomore in college and also have a lot of muscle problems. I don't have a diagnosis either. It's very frustrating and sometimes gets me down. This post made me cry and realize just how often I do look away from God and just want to know all the "why" and "how" and "what" answers. So, I thank you. (I stumbled across your blog searching for other cases of hypotonia. Keep up the blogging, may God bless you and Maggie. I know what it feels like to go through life never really knowing. It gets hard, but you soon learn that there are others far worse off and loved ones that couldn't care less.)
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