The lack of parents with children that have the same diagnosis sparked my investigative and researching personality. I decided to try a plethora of keywords to find other resources for support locally, armed with the power of the internet. A word of caution: what I stumbled across may be hard for some to read, it may cause indifference in others, but for me it was heartbreaking.
Of course, I found the usual. Not a whole lot. But I found an article from 2011 on why a mother chose abortion at 29 weeks. If you care to, you can read the full article here. I will give my short summary. Basically, a woman found out when she was 29 weeks pregnant that her baby had polymicrogyria. It does not go into details on the degree of underdevelopment in her growing baby's brain, but she was given the same expectations we were told of Aisllyn after her first MRI at the beginning of March with one exception; during the imaging, the doctors found that the baby appeared to have difficulty swallowing. With the support of her doctors and her family, she chose to have an abortion. My heart broke. I personally don't agree with abortion, but I try to respect other people's views, beliefs, and choices, even if it is in disagreement with my own. And I will respectfully state that I have no words to describe how heavy my heart is over her decision. Did she make the wrong choice? I don't know. I'm not in her shoes, and have no knowledge of her family's circumstances. It is not my place to pass judgement. It was just very close to home for me. But I can honestly say that I wish we had known while I was carrying our angel. She would have received the therapies and help that she needed from birth. I fully believe that she would not have missed her milestones if she had been receiving physical therapy, occupational therapy, and speech therapy from birth. She is proving herself stronger than we have been told she can be...daily!
Let me pause there for a moment to give a clear example. We were visiting with her neurologist after her first EEG (electroencephalogram - used to detect seizure activity in the brain). The abnormal EEG results proved what the MRI told us - she has the potential for seizure activity in her brain due to the underdevelopment. Up to this point, after 3 visits, I'm pretty sure Aisllyn hadn't said a word that was intelligible in the neurologist's presence. I really don't think he believed Aisllyn had a vocabulary, and would even go so far to say that he likely thought we weren't being honest with him. He was typing and clicking away on his laptop, going through the results while Aisllyn happily played on our laps. She began to play with Thomas' sunglasses that hung around his neck. We repeated the word 'glasses' several times to her while she pointed to them. All of a sudden, in her sweetest little Aisllyn voice, she says VERY clearly and with a purpose, 'ga-sez'! Her neurologist (without looking up from the computer) paused from the typing and clicking for about 3-4 seconds, and then...he smiled. That moment gave my heart hope. She is surprising the heck out of the specialists we are seeing; this being just one example of many.
That being said, I will continue... I cannot fathom the idea of abortion because my child would be born with a diagnosis that would require more work for everyone involved in her care. Do I wish we didn't have go through it? Sure! I would be lying if I said I didn't. But I know that Aisllyn is here for a reason. She has a purpose in her life, just as we all do. She is our responsibility to nurture and mold, to love and to teach, not to decide that we can't handle the strain that comes along with her diagnosis. Financially, medical bills that insurance doesn't cover start to add up. Physically, there are days that I am so exhausted because I had to get up a few times after putting her to bed to try to rock her back to sleep, until finally giving up and bringing her to bed with us. Emotionally, it is hard grieving the loss of the life that I thought Aisllyn would have with us.
**and when I say 'I', I really mean 'we.' Thomas does more than his share in our lives, I just don't want to pin my feelings, thoughts, and words as his**
But, financially, we work harder to take care of expenses. Physically, I choose to rock and rock and rock her back to sleep because, although it is tiring, it feels so good to have her so close to my heart. *side note: we don't do the 'cry it out thing' because she can pull herself up in her crib, but has trouble getting back down* And even if we sleep on the edge of the bed because she wants to sleep sideways between us, having her snuggle up to us as she drifts off is close to heaven. Emotionally, we celebrate daily her accomplishments and the life she does have with us.
To My Daughters (Taylor, Hannah, and Aisllyn):
You show me every day that I have no need to place limits on what you can do, because every day you do something that far exceeds my expectations. God has chosen me to be your mommy, and I will do my best to give you the love and support you need to grow farther in life than anyone could ever expect you to. I can only hope that you all know how far my love goes, even when times get tough (and when hormones kick in!). But most of all, I wouldn't change a thing.
I want to finish this off with a poem that I stumbled across after reading the article that hurt my heart. God looks out for me and He certainly knew that my heart needed healing at that moment. The poem brought tears to my eyes. It reminded me of the love I have for my girls. And how thankful I am to be their mommy. Enjoy!
An Angel Left Her Wings
I have this little angel. For me she left her wings.
She has no idea how much happiness she truly brings.
She brightens up my days with her smiles and her laughs.
She helps me to remember all the blessings that I have.
Her face, it is so perfect, she's sweet and soft and pure.
Sometimes she can be willful and sometimes she is demure.
She tries her very hardest to please and do what's right.
She gives the greatest hugs from morning until night.
Every person that has known her sees this light within her soul
I know that in this whole great world, she has a special role.
She's helpful and considerate to everyone she knows
This light in her shines brighter as my angel grows.
When she sees someone is sad, it opens up her heart.
She wants to do all that she can; she wants to do her part.
She'll squeeze away the sorrow and make me forget about my pain.
She shows me where the sun is when we're hiding from the rain.
I know that God must love me, He showed me with His Grace
I knew just how completely when I saw my angel's face.
And in that very moment when she came into my world,
I knew that she was so much more than just my baby girl.
She would be my sunshine, with a sweetness that won't end.
And when she grows up one day she would be my closest friend.
She would be the reason I would always try my best.
For my little angel baby girl would be my greatest test.
When God entrusts to you an angel, who has left her wings for you.
Encircle her with love with everything you do.
Let her know God made her, and that He trusts you with her care.
Be sure to make time for special moments with her to share.
And when at night she finally says her prayers and goes to sleep
I Thank Him for my angel, and ask for him to always keep
A watchful eye and hand to protect her from this world.
Protect my little angel; protect my baby girl.
She has no idea how much happiness she truly brings.
She brightens up my days with her smiles and her laughs.
She helps me to remember all the blessings that I have.
Her face, it is so perfect, she's sweet and soft and pure.
Sometimes she can be willful and sometimes she is demure.
She tries her very hardest to please and do what's right.
She gives the greatest hugs from morning until night.
Every person that has known her sees this light within her soul
I know that in this whole great world, she has a special role.
She's helpful and considerate to everyone she knows
This light in her shines brighter as my angel grows.
When she sees someone is sad, it opens up her heart.
She wants to do all that she can; she wants to do her part.
She'll squeeze away the sorrow and make me forget about my pain.
She shows me where the sun is when we're hiding from the rain.
I know that God must love me, He showed me with His Grace
I knew just how completely when I saw my angel's face.
And in that very moment when she came into my world,
I knew that she was so much more than just my baby girl.
She would be my sunshine, with a sweetness that won't end.
And when she grows up one day she would be my closest friend.
She would be the reason I would always try my best.
For my little angel baby girl would be my greatest test.
When God entrusts to you an angel, who has left her wings for you.
Encircle her with love with everything you do.
Let her know God made her, and that He trusts you with her care.
Be sure to make time for special moments with her to share.
And when at night she finally says her prayers and goes to sleep
I Thank Him for my angel, and ask for him to always keep
A watchful eye and hand to protect her from this world.
Protect my little angel; protect my baby girl.
Source: http://www.
Family Friend Poems
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