In early April, the Schulte’s and O’Brien’s arranged a meet up to visit and get to know each other; but more importantly, get to meet Kendall and Elsa. We decided to collectively write a post about our feelings of the past and future. Here is our story…
Looking forward
Meeting Kendall, for us, was like a sneak peek into Elsa’s future. We initially heard and read so many scary things about Wolf-Hirschhorn Syndrome, and Kendall defies them all. We know that Elsa will, too. Here are the top 5 things we learned from our wonderful meet up:
5. Cause and effect and object permanence are in Elsa’s grasp. Whenever I left the room with Elsa, Kendall inquired about where the baby went. Keeping tabs on Elsa was a top priority during our visit, and what was out of sight was absolutely NOT out of mind!
4. Walking is attainable, not unlikely. Kendall moved around the house with ease, joy and speed, even climbing staircases. There was no place she couldn’t get too. And there was nothing she couldn’t lift or move! Kendall was able to pull Elsa’s car seat to and fro – something Elsa’s momma struggles with from time to time!
3. Dinner around the table is something that Elsa can truly be a part of. Kendall sat in a chair at the table and ate on some yogurt, piping into conversation with her other siblings. If we’re lucky enough to have other children, we look forward to gathering together in this important way.
2. Life will balance into normalcy and trump unanswerable questions and the uncertainty of the next impending doctors appointment. There were so many things to talk about other than the latest weight check and specialist visit. Fear takes a back seat when you’re simply sharing smiles and hugs and time together.
1. Elsa will always need, crave and adore our attention. Kendall just loved being on our laps and checking in on what we were up to. What a social girl! We hope Elsa is able to make such beautiful, heartfelt eye contact and connect as deeply and emotionally as Kendall. Thinking of her smile still lights us up!
Looking Back
We were so excited to meet Elsa. Our anxiety of seeing a new born girl with WHS was something that we wanted to consume and be grateful for. Our experience with Kendall through her initial 9 months was so trying, that we never had the chance to take a breath and realize what was in front of us. With no answers to the challenges Kendall faced, we were left scratching our heads wondering about her lack of development and feeding. With the chance to meet Elsa and her parents to share stories, we had a great opportunity to win back some of the moments that were clouded with question marks and anxiety during Kendall’s first few months.
Here are our 5 top memories from our gathering with the Schulte’s:
5. Knowing the diagnosis, Elsa gave us a look into the peace and purity that all WHS kids have at such an early age. We missed this part of Kendall’s first few months as we never knew what she had until she was 9 months old.
4. Watching Elsa feed was a wonderful moment. Kendall, to this day, struggles with textured foods. Seeing Elsa take a bottle, when Kendall had so much difficulty, was an amazing site to see.
3. The optimism and strength that Elsa’s new parents bring to her life. WHS is something that nobody plans for. Knowing that Elsa has a rare condition and she will be what she is capable of being, Anitra and Dan seem grounded and well prepared for her amazing life ahead.
2. Sharing our experiences can only help this wonderful family and their care for Elsa. Having met Elsa at such a young age, we can’t wait to see her grow and develop. Our only experience with WHS from the beginning is with Kendall and we’re always thinking about Elsa and how she is doing.
1. The acceptance of Kendall by a new WHS family. Having a child with an incurable disorder is a very hard pill to swallow. When we found out about Kendall, the pain of the diagnosis lasted a long time; shutting out WHS and the community that came with it. Watching Anitra and Dan interact with Kendall was a very happy time for us.
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Elsa and Kendall’s Families –
What a lovely post. As you know our little man JD was born just about 4 weeks ago and we are very excited there is such a wonderful community waiting for him. We feel blessed not only to have such a great little guy but to have such loving families so close to us. As we wait for JD to come home from the hospital we continue to read your stories and we look forward to adding an adorable little boy to the mix of your beautiful girls.
We cannot wait to meet all of you and start to share our story as well. I think it will be great to have 3 different yet similar experiences. One with a diagnosis at 9 months, one with a diagnosis at birth and one with a prenatal diagnosis.
Thank you for sharing and we look forward to sharing as well.
Jenn
I think it’s so great that you’ll had the opportunity to meet like you’ll did. I wish I could do the same. I live in Corpus Christi, Tx and it seems as though we’re miles away from everyone else, especially when I click on child locations. I’m sure there are other families out there that haven’t registered. Either way, I hope you’ll have just added new permanent members to your families.
I love this! What a great co-written post. Thanks for sharing your insights and your special time together!
Letty, as far as I can tell from the support network on facebook, there’s a group of about 6 Texas families that meet. I’m not a Texan, and I hear it’s a gigantic state (!), but maybe you can meet up with them?
I love this post. It’s so interesting to read your perspectives of the same get-together; and it sounds like both families were encouraged. Having met Kendall myself, I can attest to the hope and inspiration she offers families with younger children, but I love that Elsa is also already such a source of peace and hope. Thanks for sharing!
It is great to see two children with WHS doing so well, and their parents coping so well. Anitra, you are right, life settles into a new normal. Our life feels very good and normal to us. I know it isn’t normal, but it is an abnormal, normal. It wonderful to share it with someone who understands. I do not know anyone with a child who has WHS, but I meet regularly with other families who have children with SN. We share an automatic bond.