Tuesday, October 2, 2012

31 Days of Support: Embarking on A Journey (the day I found out my daughter was blind)


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As I shared with you yesterday, I embarked on the special needs parenting journey over eight years ago. Somewhere in the back of my mind I pictured it as more of a detour, that one day our lives would return to the path of normalcy.

I didn’t realize this was the new normal for our family.

Even though our daughter had health complications from day one, we weren’t exactly sure what ramifications being born prematurely would have on her future.

Four months into the NICU journey doctors discovered that she had developed Retinopathy of Prematurity (ROP).  Cami underwent three surgeries to help prevent further detachment of the retinas, but it was unclear as to what extent this would affect her vision.

No one had a definitive answer to the question that was slowly growing into my worst fear. 

Will she be blind?

The Day I Found Out

I remember the day as if it were yesterday. 

A group of teachers from the special education program in the county’s school system came to assess Cami in our home.  They were vision teachers (or TVI’s—teachers of the visually impaired) observing Cami for the purpose of suggesting and creating goals for her upcoming placement into a special education preschool program. 

They had her play with blocks, books, and a few other similar activities they had brought along.  They were kind and friendly, asking me several questions about Cami throughout the assessment.


I was not prepared for the conclusion of their observations.

“We believe Cami will need to begin learning pre-Braille skills as part of her preschool program to help prepare for Braille reading….” They continued on in their explanation but their voices faded into the background as my mind tried to process what had just been said.

Why on earth does Cami need to learn Braille—Braille is for blind people!? I thought.

The weight of realization hit me hard.

I began to cry.

The ladies were comforting and I was especially touched when one of the teachers offered her empathy—ironically, she was also the parent of a child who was blind.

That was the first time I remember receiving Cami’s diagnosis of blindness.  Yes, we had learned the technical term of her eye condition when she had developed ROP in the NICU at 4 months old, but it wasn’t until that day—over three years later—that the reality of her diagnosis hit me.  The answer I’d dreaded all along had been given:

My daughter is blind.

The Day You Found Out

I know you remember the day you received your unimaginable news, too. 

Whether you suspected the diagnosis over a period of time or whether you were completely unaware, the hurt and shock was still there.  But I think you’ll agree with me over the importance of that day in your life.

Why?

You received an answer.

It was the day you embarked on the journey of parenting your special needs child.  

After finding out the extent of the damage ROP had caused on my daughter’s eyes I was able to move forward.  Now that I knew she was blind/visually impaired I could get busy equipping myself to help her.  Before, I had felt helpless in wondering.

Does this mean the feelings of helplessness magically vanish? Or that the path ahead will be free from other diagnoses? Of course not. In some ways it opens the door to a host of other feelings or leads to the discovery of another diagnosis. 

But that’s just it:

Receiving a diagnosis is important because it is the beginning, a starting point from which to move forward

In order to know which direction you must take in making decisions for your child (and for you) it is helpful to be aware of the specific journey on which you are traveling.

For those of you who have received a diagnosis—whether 15 years ago, 9 months ago, or only in recent weeks—I want to encourage and support you by reaching out to where you find yourself along your journey. 

When I wrote out the events from that day, the tears flowed again; but these tears were healing.

Today, I’m encouraging you to share about the day you embarked on your special needs parenting journey.  If you’re comfortable sharing that day publicly, feel free to leave me a comment (you could also share a link in the comments to a blog post in which you’ve shared your story previously).  If you’d rather share your story privately, feel free to email me here.

I love to hear from my readers and am blessed when you share your heart through the comments below.

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Have an extra minute?  Check out three of my blogging friends also participating in the 31 Days:



                                                          

12 comments:

  1. Wonderful post, thank you for encouraging others to share their starting point, because that is what it is, what at the moment seems like the end of a dream is really the beginning of a different dream and journey.

    Our son became seriously ill 8 years ago after receiving his chicken pox vaccination at the age of 1 - encephalitis. He had swelling on both sides of his brain, seizures and was in a coma. The doctors told my husband to prepare for his funeral. 8 days later we took him home, he had to relearn to walk, talk and do other things but for the next 5 years we went on to celebrate his recovery.

    As he started kindergarten it slowly came to light that not all was well. Over the last three years, and even the beginnig of this school year there have been tests, and more tests. 2 years ago we finally found out that our son has damage to an area of his brain that affects his ability to read and he suffers from short term memory loss. There are times when we have the same conversation several times as if we have never had it.

    Knowing what was wrong allowed us to change directions and begin to walk down a path to help him be successful.

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    1. Linda,

      Thank you so much for sharing your story--I feel privileged to learn more about you and the the journey you are traveling in caring for your son.

      I know he will have every opportunity to be successful and he's blessed to have you as his mom!

      Blessings to you,
      Rachel

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  3. You say it so well. I use too many words, and I tend to think of it all happening on one day...because it did...but it hits me in blows here and there...when I buy him bigger clothes, when the wheelchair starts looking like a real WHEELCHAIR...I'm still finding out..."under the shadow of His wing"

    This is when we knew:
    http://arearrangedlife.com/being-rearranged/

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    1. see my comment below (not having much luck with the comments today, ha!) =)

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  4. I think you write beautifully, Miriam, and I appreciate your honesty in sharing! Your faith amidst all that you've faced was a blessing and encouragement to me, and your son (and other children) are blessed in having you as their mom.

    Thank you again for taking time to comment and for sharing your story!

    Blessings to you,
    Rachel

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  5. Rachel,

    Thank you for this. I too am parenting several special needs children. I haven't chosen to share about it publicly yet (due to several reasons, one of which is that one need is quite sensitive in nature) but I can completely relate to the moment of realization that hits you like a load of bricks: something is not "normal" with my child.....

    But, the Lord gives strength, and for me, it the realization and the months that followed are a large part of our adoption story and why we believe so fervently and passionately that ALL children are a blessing and deserve a loving family.

    As always, I love your blog---thank you for your transparency.

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    1. Selina...I understand you not choosing to share publicly yet. There are still things I choose to keep just to our family (depending on the nature of such) and you have to do what is best for you and your child. I will be praying for you as you care for each of your children, and for an extra measure of strength for those with special needs.

      And you are right...ALL children are a blessing from the Lord! LOVE reading your journey of adoption through your blog =)

      Blessings,
      Rachel

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  6. I have such tears reading this. We have yet to receive a diagnosis. We have been in process for several months. My (youngest) son was born six weeks premature - and spent 2 weeks in the NICU to learn to eat. (Sidenote - my oldest son was born 10 weeks early, spent 7 wks in the NICU, eventually had some PT, but is developmentally fine these days.) G (my youngest) had some vision concerns at the beginning, but the experts declared him fine. He started falling behind w/ milestones at about 6 mths. He qualified for PT. Still as the months went by, he was falling behind not just in gross motor skills but in all other areas. Everyone "the experts" said it was just a preemie thing. But here we are, a couple of months from age 2 - and in recent months all of those "experts" are NOW concerned. We have seen neurologists and just recently a geneticist. We are waiting for approval to get bloodwork/chromosome testing done. The geneticist mentioned a couple of possibilities, but nothing for sure. I'm sorry if I am rambling here, but the not knowing is just so hard. If I know - then I can do everything in my power to provide the best resources for whatever we are dealing with. And I am so tired of explaining (or not explaining) to all the other mommies at the church nursery, library, etc. why my beautiful boy is not doing what their much younger kids are doing.

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    1. Amanda...I'm so sorry to hear of the struggles your son is facing! I know how exhausting the journey to receiving a diagnosis can be. Often it's the waiting and not knowing that are hardest.

      I appreciate you taking the time to share you thoughts in the comments (it's not rambling at all!) and I'll be prayirng for wisdom in your search for answers, for the doctors administering care/evaluations, and for strength for you along the way in caring for each of your children.

      Hang in there!

      ((Hugs)),
      Rachel

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  7. Love your sweet spirit, Rachel. While mine was not a diagnosis of health issues for my child, it was rather a diagnosis of loss through miscarriage. It rocked my world. What did I do wrong? Why me? Would I be able carry future babies?

    Fear and mental anguish are very real. And like you've shared, in all diagnoses, there is definitely a period of grief, healing and moving on. God's grace and strength are certainly strongholds during uncertain times. Thanks for your openness to share with others.

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  8. wow, Rachel! Can't imagine. Never have experienced the sense of loss and hurt and fear that you have in that way. I am sure that you have a stronger faith in God than most because of it. Your words express your feelings and story beautifully too.

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I consider it a privilege to share my story with you, but the greatest blessing? When you share yours! Feel free to share your heart by commenting.

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