Yeah yeah yeah … I know it’s been a while but with two babies around the house I have been up to my ears in diapers, kisses and hugs! B&E had their well baby visits 10 days ago and both weigh over 15 pounds and are growing perfectly. It has been so long since a “well baby” visit really meant WELL baby that I cried with relief leaving the doctors office. Although both girls do have terrible ear infections (are there GOOD ear infections?) overall they are doing great. Going into the clinic with the girls is so weird and I notice that both Andy and I change into our defensive modes. We are tense and waiting for some weird anomaly diagnosis to be tossed at us like a dart to the bulls eye. It comes from years of deflecting blows of bad news and I know that all is OK but never-the-less it’s a hard day even if it is good news.
It was a strange feeling to leave the docs office with our questionnaire for the girl’s 6-month visit and drive home not quite believing that all is well. I was given the 6-month questionnaire for Larkin back in 2006 and being the dutiful mother I am, I went home and began to work on it. About 4 sentences into it I was puzzled as to how I would answer the questions because L was so far behind and so very sick. How do you answer, “does your baby smile and coo?” when your baby is lost to a horrific seizure syndrome that has stolen her smiles, eye contact, and frankly our entire foothold on who and what we were as a family. It quickly became clear that I couldn’t fill anything out as Larkin was no where close to functioning at a 6 month level so I called the doc office and thru my tears asked if I could fore go the paperwork. Of course they were very kind and quickly told me to not worry about it.
Later that week I taped Fourteen playing with B while she was in her swing and he was making her laugh and squeal. I posted it to facebook and sent it to family because it was so darn cute watching a teenage boy play with his baby sister instead of X-Box HA! I watched the tape over and over because it is so sweet seeing Fourteen interact with B …. BUT at the same time I became so sad at the realization that Fourteen was robbed of this monumental bonding time with Larkin. He never got to engage her with games of peek-a-boo, making her smile by getting in her face, hugging her tight and talking to her, nor was he able to be the big brother and watch her while I ran to the grocery, or give her a bottle.
He was robbed just as much as we were as parents. It was a constant fear for him that Larkin would die and he wasn’t far off the mark so while we reassured him that we were doing everything to help her, his fear remained. I have 4 brothers and 2 sisters – I am number 6 of 7 so I know how important siblings are and I would be lost if I didn’t have them in my life for strength, love, laughs, and guidance. Fourteen has had to be the strong sibling and he plays his role perfectly. He always has Larkin’s back, plays with her, loves her, and engages her to be the best of both their abilities.
Loving Larkin was a one way street for much of her first 3 years of life but with the help of a lot of medications, the ketogenic diet, therapy, and her teachers, she has been able to reach out to us. I have told the stories of her eye contact coming back, smiles, and her first hugs for us. Today I can add to the list that she began walking on her own 18 weeks ago (same week the babes were born), she now is signing “more” by clapping her hands together, “please” by swiping her hand across her chest, and we are working on “eat” and “drink”. She has begun to really communicate her needs to us in so many ways such as going to her high chair when she is hungry and pulling on my hands when she wants me to twirl her around.
The brain is a wondrous thing and who knows what will come as we continue down our path but one thing is sure ~ Larkin is deeply loved by her brother. Her siblings will grow up knowing that life isn’t always easy or perfect and the times when we are called to step up are the very experiences that challenge us to become better people, siblings, friends, and citizens. We have been given a gift of a child who makes us a better family and in turn better human beings.
Amy and Andy-it was great to see an updated picture of Larkin-She is Beautiful! Congratulations on your twins and also on the new developments in Larkin’s Place-you both are phenominal people! I am interested in writing a book about the Courage and Love of families like yours with special needs children from the parents perspectives-let me know if you would be willing to be interviewed. You can E-mail or call me -Blessings to you all-Chris Weaver