Saturday, June 30, 2007
The green ring attacked Addie at dinner tonight and instead of helping her, I patiently waited to see what she would do. She managed to get the ring off her arm; she grabbed it with her right hand and threw it! It was the most amazing feeling when I saw her accomplish this small task! She is doing so wonderfully, I am so proud of her! By the way...isn't she beautiful?
Saturday, June 23, 2007
Friday, June 22, 2007
To the end that my glory may sing praise to thee, and not be silent. O LORD my God, I will give thanks unto thee for ever. Psalm 30:12
Five months ago, Addie was diagnosed with Microcephaly and Pachygyria.
Microcephaly is a disorder that could result in mental delay, delayed speech and motor functions, seizures, difficulties with coordination and balance and other brain or neurological abnormalities. To say this news was devastating was an understatement. Eight days later we were told that in addition to Microcephaly, Addie also had Pachygyria, which meant that the diagnosis in and of itself was catastrophic and incomprehensible. This would lead us to a prognosis of severe delay and a bleak future.
Two neurologists agreed on the diagnoses and then her MRI was sent to Dr. Dobyns in Chicago for review. He is a geneticist, pediatric neurologist and world renowned for his characterization of human brain malformation. We've been waiting for five months to receive his evaluation back and we received the news today (these are only small parts to the emails, the other parts I am unable to go into detail about)....
Addie no longer has a "secondary diagnosis" of Pachygyria. Although based on his notes, Addie does have abnormal findings, he states: "I do not see any cortical malformation. Many children with this pattern only have moderate handicaps." The lack of cortical malformation is huge; I can't even begin to describe to you what joyous news this is! As for his comment about "moderate handicaps", we'll deal with it if the time comes; otherwise I will trust in God to continue to heal her. I won't lose hope and I won't let Addie down, I will never give up and I will prove those words wrong!
I emailed his response to Dr. Ness and Dr. Dudgeon. I'm anxiously waiting to hear back from Dr. Dudgeon, but I did get a reply back from Dr. Ness today. Her words were very encouraging: "Going through emails below, it looks like Dobyns doesn't think there is pachygyria or other cortical malformation...right now, it sounds like she is in the microcephaly group with the best outcome."
I can't stress enough how AMAZING this is. In the beginning, there may have been misunderstandings in the reading of her MRI, but I am convinced it was the power of prayer and GOD's amazing healing power that "dismissed" her secondary diagnosis. Please take a moment to thank GOD for the miracle HE blessed us with and PLEASE continue to pray for Addie. She will continue to surpass all odds.
Sunday, June 17, 2007
Well meaning people have sent me poems and articles over the last few months and although I know it is well intentioned, I don't like to read what is sent to me. This article is different though and was sent to me by a nurse at work...I only read it initially because she knows what I'm going through from personal experience.
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."
Thursday, June 14, 2007
Wednesday, June 13, 2007
Tuesday, June 12, 2007
Addie found her piggy's at 11:15 last night! She was amazed that they were still there today and has taken every opportunity to play with them! She is talking to them and thinks they are so funny! Her ultimate goal is to actually get them in her mouth, but they keep running away right before contact is made!
According to what I’m told, these next few months may bring about delays. Please continue to pray that Addie meets her milestones (on time) and remains seizure free. Both of these requests are extremely important for her development.
Monday, June 11, 2007
Saturday, we had a fun family day shopping for the kids. Addie and Julien were great sports about being bustled from one place to the next and we managed to get a lot accomplished. Overall I enjoyed the day, but complete strangers have a way of dampening my spirits. People can’t help but to stare or take a second glance at people with disabilities. Why? I’m not quite sure. Before Chris and I go in somewhere, we take a deep breath and have the unspoken dread of the comments that might come from people. I know how hurtful those long stares and second glances are. I spent all spring at the baseball field feeling people’s eyes on Addie and wishing the situation would just go away. We live in a really small town and I want people to be accepting of her and to realize how wonderful she is and that she has so much to offer. So, for the people who just don’t know what to say or do if presented with someone who you think is less than perfect (define that for me), I’ll tell you:
Be compassionate - realize that the families are going through complete HELL and are struggling each minute of every day to cope.
Don’t stare - please. If curiosity just manages to get the best of you, ask “THE QUESTION”, but be tactful. If you caught me at a moment where I could talk about it, I would try my best to answer your questions.
Instead of making the nasty-nice comments - find something great to say…”your baby has the most amazing smile or her blue eyes light up her face”. The best comment that I’ve heard came from an older man at the mall this weekend and all he said as he passed was, “now THAT is a cute baby”. Remember Oprah’s “Random Act of Kindness” hoopla? All it takes is a kind word to turn a bad day around.
Please find the good in people, especially those that have obvious struggles in life.
I truly believe in my heart that Addie will grow up to be an amazing woman and she will accomplish everything in life that the doctors say she never will.
Each day I hold the closest thing to heaven in my arms, and when I look in her eyes, I see perfection. I want everyone else to see that too; after all, she is GOD’s creation.