Today another coffee-hour discussion after Liturgy got me thinking. Many people ask how Nika (our four year old daughter) is handling all of this. I'm not sure except that she definitely knows something is different about Leo. It all started in the hospital when she told us that Leo has (quote) "a little big head". He is indeed our "little big head" like something from Dances With Wolves :).
However, this is old news now that his second shunt seems to be working well. BTW, his head circumference measures 42 centimeters down from 56 at birth. Thank God! Those who see him now are not so distracted by his large head. He is capable of many more cute expressions like raised eyebrows, smiles, and wonder-filled eyes (as the video below indicates).
Anyway, back to Nika. This is something I have been intrigued with lately. There is a point when parents get to watch salvation at work in their child. I didn't know what form this would take with Nika because she is only four years old, but I realized that Leo is part of her life and therefore plays a role in her salvation at some level. He will always be with her. What I mean is that this whole saga is playing into her life at very profoundly deep levels. She will be conscious of the impact this has on her but time will tell the results. It will be acute even if all she has is a memory of her brother. Her brother will always be challenged, disabled, not like other kids, and she will have to adjust her perspective of things. Period. She will have to wrestle with this at some level as she grows up and takes in the world. What will her little mind come up with? What is the explanation to the unexplainable? Nobody will be able to give her an explanation except perhaps later when she learns some science and how things work. But until then she is logging it away, pondering it, questioning it. This becomes who she is trying to make sense of it all. So much will happen (God willing) in her emotional registers as it pertains to her brother. This is not a tragedy as it may seem at first. It just means there is a palpable force in her life already active at some level and her salvation hangs on it. When I realized this (just the other day :0 ) a weight lifted off my shoulders. I could see how God is at work in my child. There are no answers and no quick fixes just a realization that this is how it will be for her. Will it trip her up like it does her parents? Will she be coming closer to God or pulling away? I hope and pray for the former.
If I had to sum it up I would say she is taking this all in stride like a perfectly blissful four year old. She doesn't find herself on the threshold of the pit like her parents, but I think this means there is more potential for her, more hope, and more Godliness.
Thank you for the continued prayers. It is great seeing all of you in the short moments our paths cross.
I love Leo's yawn and how wonderfully he looks at Nika! This definitely made my Monday morning. Thank you.
ReplyDeleteLove from the Whitfield clan.
I love:
ReplyDelete1. How blissfully drunk he looks when his bottle is done.
2. How he looks at his sister.
3. The little yawn.
4. The baby noises (love them!)
5. How sweet she is with her brother.
Two of our children are 10 months apart. Our oldest, our daughter has Down syndrome and our son, the younger is a 'typical' child.
ReplyDeleteWe have never really had to give our son an explanation. Having a sister with DS was just so organic and natural that he took it all in stride. When something would come up that had to do with her disability it was treated as just another normal happening. I would say that the only time that it ever got a little 'hairy' was when our son began to pass up his sister 'intellectually.' His questions like, "Why can't Alice, (insert milestone here) do this but I can? Were answered honestly and matter of factly.
Our daughter is now (Soon to be 21) and our son is twenty. Their relationship is typical brother sister as well as that kind of special bond of love that I think only a sibling relationship can be if one of them has a disability.
Sorry to get so long winded in a comment, but I just wanted to let you know from someone who has been down the same road...sorta.
Give a kiss to Leo for us!
What a beautiful interaction between brother and sister!
ReplyDeleteIt is so amazing how well kids can handle things! They have so much to teach us. Your post reminded me of when Christopher was born. He had to spend awhile, almost a week, in the NICU for breathing troubles. What made it the hardest for me was when Gideon came in to see his baby brother for the first time. I had spent countless hours during the pregnancy envisioning this moment and how happy it would be. Flowers, balloons, calm happy mommy, etc. Instead he met his baby brother in the NICU, hooked up to monitors, etc. It wasn't until later, after the hormones had settled and I had a bit of perspective that I realized Gideon was fine with it. He had no expectations, those were all mine.
ReplyDeleteThe video is wonderful. They are both so sweet!
I really love this video. Leo is so sweet, and Nika is obviously a great big sister. It reminds me of how she used to listen to Michael's monitor. Lots of love!
ReplyDeleteCan't believe how much smaller Leo's head looks!Thank God that the shunt is doing its miracle.Isn't modern medicine amazing?
ReplyDeleteMy daughter Alexandra's husban has a younger brother who has Down Syndrome.Jon and his brother are very very close.It made him into a compassionate person who accepts and sees human differences as a natural part of life.
Nika's life will surely be impacted by Leo, but I think it will only make her rise to the occasion and help mold a more loving,understanding
and humanitarian side.
What a beautiful post, Anna. That last moment, when Nika caressed Leo's head, brought tears to my eyes. Surely she is working out her own salvation even at such a young age, and Leo is pivotal in that progress. May we all learn her acceptance and unselfconscious love. We love you guys-can't wait to see you in a few weeks.
ReplyDeleteThe Carrs
Leo and Nika are simply irresitible!
ReplyDeleteHannah: "Look at Leo's chubby cheeks. I want to kiss them!"
I hope she can, someday. So for now, we send you all our love with lots of kisses.
Kelley & gang