I just wanted to write a quick note thanking everyone for reading my site and caring about my baby and my family. Some days are easier than others and a lot of times it's just really sad. Everyone keeps telling me how strong I am, but many days I just don't feel very strong. It's very hard to know that your child is not going to have a normal life. Life is hard enough with all of your senses and I just can't imagine what hers will be like. I feel very guilty too. I keep wondering if there was something I could have done to prevent this. Someone recently asked me if I thought she was born this way because I work in the hospital. Like maybe I caught something there that made her the way she is. That was a very hard thing to be asked. I wonder if other people are thinking this to. Am I to blame? I don't know. The doctors say that it is probably something that just happened. Unless it is some kind of genetic syndrome that Seth and I carry. We will know more about that once we see the geneticist on August 2nd.
I know that in time it will get easier and that she will adapt, grow, and develop normally. I know that she will be fine, but right now it's hard to picture the future. I really would give anything for her to be able to see. If I could trade places with her, I would do it in a heart beat. Many days I'm angry too. Why did my baby have to be born with a disability? I'm sure a lot of parents with special needs children feel the same way.
I just hope that I can give her everything that she needs. I hope I am good enough. I guess I'm just feeling overwhelmed today....everyday. I try to give myself encouraging words and know that she really will be okay. I worry about what the future holds for Kekoa too. I worry about him being teased and him overhearing people talk about his sister. I know that these things will happen and it makes me very sad. I don't want people to say bad things about her or stare at her. I'm sure it will happen though. It already has. People ask questions, they want to know whats wrong with her and why she is missing her eyes. We as a family have to get used to this. It's very hard right now. I just want to stay inside all the time and protect her and Kekoa. I suppose it will make us stronger and make us more appreciative of the little things. Our lives really are what we make of them. Who knew what emotions a little 6 pound package would bring. Lots of happiness and sadness all at the same time. Most days more happiness. She really is a very beautiful, special baby.
It’s Great to be 8!!
6 years ago
6 comments:
hey shannon,
i think it's completely natural what you're going through and i'm sure many other special needs childrens' parents go through it too. i believe this is the way oli was meant to be born and it's going to change everyone's lives forever for the better. i don't believe there's anything you could have done differently during pregnancy and it seems completely normal to me to mourn the loss of the expectations you had for your child. maybe if the radiologist had informed you when they were supposed to it would be easier at the moment because you would have been prepared and already have gone through the stages of mourning. you have to go through all of this (anger, guilt, depression, bargaining, etc.) in order to move forward. be gentle with yourself and just take things moment to moment. remember, you're only human.
as for kekoa, i honestly don't believe you have anything to worry about. having oli for a sister will only make him grow into a more compassionate person and what's wrong with that? kekoa is a little bull, i don't think kids saying his sister is blind will deter him from anything or get him down. having parents such as you and seth is the best thing both of these children could have.
call me if you need anything: someone to vent to or someone to babysit. i promise not to judge.
on a lighter note, i have PRESENTS! let me know when it's a good time to come out there and deliver the goodies. i'm not sure what my work schedule is this week, but it's most likely openings so maybe sometime in the afternoon?
anyway, i'm thinking of you and love you!
Shannon, I don't know who Ginger is, but she's SMART.. Listen to her. I agree with everything she said (and said so well, wish I was that good at communicating!). Even though I haven't written or called, I think about you every day! You have a beautiful family and you will do your best. We all love you and pray that you continue to have the strength that's needed to be a great mommy to both Kekoa and Oli!
Hey Shannon!
Long time no communication! Well, I get my info from mom and she called me this morning and filled me in with the information and sent me the link to your page about your BEAUTIFUL daughter! She is soooooo cute!
As a mother myself...I can only imagine what you must be feeling all the happiness and excitement of a new baby, not to mention all of the worry and sadness that must come along with Oli's blindness. I just wanted to let you know that you and your family will be in my prayers! I think that this webpage is a great idea! I hope that all is well in the present! Take care!
Janai
Shannon,
you are such an amazing woman. I was truly mesmorized the day we came over and i saw you sitting there with oli. holding her, talking to her, rocking her, loving her. Funny thing is, that night when alea and i were back at julie's house, we started talking about how inspiring it was to see you. i really don't think that oli could have a better mother and friend. i know just by the way you look at her that she will have all her needs met. God blessed her with you and Seth, and i believe deep down in my heart, that God couldn't have picked better people to care for her.
Just wanted to let you know im thinking about you. tell everyone hi for me too! with a big hug all around.
Miss you guys
and im praying for you.
Love you
chelsea
Shannon -
wow - you wouldn't believe how crazy it was trying to create a blog site on this thing (and I consider myself not stupid with computers too) just so I could leave a message for you!
Ok, now that it's done - let me just say a few things, first, CONGRATS on the new baby - as you know, I barely knew you were on your second child...last time I heard about what was going on in your life was that you got married. So, CONGRATS on the first as well...:)
Of course, being over in Ukraine doesn't help sometimes - You can thank Jason for sending me this link to your site - I am always glad to learn about family on the internet, since that is my main way to communicate with the USA.
OK - just got married this month, which is another reason I am a little behind on leaving a note.
Now, as to your new cutie's blindness - I felt so sad to read about it - and almost cried myself - I know we are all thankful for our sight, and we understand the difficulties in life that can present themselves to your darling. I had another friend go through this same situation just about 1 year ago - basically because she was born prematurely for health reasons for the mother...and I prayed for her a lot. Last I heard she might be able to see a little in one eye...but not sure on that.
(I am praying for your baby/family too).
Now, as to guilt - I know you said you are doing alright in your post yesterday - but I know emotions can be up and down...because that's what emotions are...our feeling in the moment.
Basically, I want to tell you as a FACT - that you did NOTHING WRONG to have your baby's eyes not develop - and just as importantly, niether did your husband, or your daughter herself! I know that might sound strange - but let me tell you a little biblical story, which you should read, if you haven't lately. I THINK GOD MIGHT HAVE PUT THIS STORY IN THE BIBLE JUST FOR YOU AND OTHERS WHO HAVE THESE 'injustices' at birth...
As the story goes...
John 9
Jesus Heals a Man Born Blind
1 As he went along, he saw a man blind from birth. 2 His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
3 "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life. 4 As long as it is day, we must do the work of him who sent me. Night is coming, when no one can work. 5 While I am in the world, I am the light of the world."
6 Having said this, he spit on the ground, made some mud with the saliva, and put it on the man's eyes. 7 "Go," he told him, "wash in the Pool of Siloam" (this word means Sent). So the man went and washed, and came home seeing.
NOW - I THINK IT IS PERFECTLY NATURE FOR US TO BLAME OURSELVES FOR RANDOM INJUSTICES BUT WE ALSO SOMETIMES BLAME GOD FOR THESE INJUSTICES.
I would encourage you in a few of "your feelings" in the future...
1. Niether you, nor your husband or baby...did anything wrong and NONE of your "sins" (something you did wrong or didn't do right) is the reason for this "injustice". (I put "injustice" in quotes because I don't know your persective totally on the issue...you might think of this as a challenge, struggle, accident, life, or even blessing in Disguise) I just know that I feel like it is an injustice.
2. Note, that Jesus said, "but this happened so that the work of God might be displayed in his life." - I know that might sound annoying - like, ok, but why my child, and doesn't it seem crazy to "hurt" a child to have God's work displayed in his/her life. Well, yes, from human persectives...it sounds crazy. We only see the little picture, no matter how hard we try to see the bigger picture. God did an amazing thing...with this guy, including HEALING HIM! But, throughout history God used blind or disabled people to do amazing things. Not to mention...like Ginger said..."it is going to change everyone's lifes forever for the better" -
The bigger picture is already started in your hearts...you are looking at the world in a totally different way (with "eyes" you never had before) - so am I - so will all the family --- Your daughter is already helping change lives to be less selfish and more understanding and more thankful...even if you don't yet know it fully.
3. God has a job, a work...that He wants to show through your new baby - She's choosen, even if you just wanted a normal baby, and normal life - she's been choosen, for whatever reason for a work. This work might be a MIRACLE HEALING - which I am praying it is-but it might be something else amazing. Either way...I believe people will be changed for the better forever because of your baby's current blindness.
Lastly - let me just say - our thoughts and prayers are with you - Tanya and I are praying...and hoping for that miracle healing and for understanding and help in the days and years ahead...
your cousin,
Rick
Hi Shannon,
Five million years later... Thanks to Ginger, I have actually gotten on your website and figured out how to leave a message !!! :) I am so impressed with everything you've done- above and beyond already being a great mom! You have risen to every challenge with strength and dignity, and continue to face everyday with grace. I know you've heard it a thousand times before, but truly there could be no other parents better able to love and raise Oli and Kekoa than you and Seth. I am so happy to be their auntie, and proud to call you my sister, and well, I guess I'm stuck with Seth as a brother (hee hee!). Really though, you two are an amazing team, learning and growing together, and sharing your unique talents and gifts to raise these beautiful children. I have so much respect and admiration for you both. Thank you for taking the time to answer all of our questions about Oli (and explain everything in detail -again and again for some of us!) and for keeping all of us that love all of you up to date on her progress! God bless you. Love & light, Ju
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