Here we are two days before Valentine’s Day 2018. The invites for our Valentine’s Day party (to take place on Saturday) have been sent. The party games have been arranged. The list of to do’s is growing smaller. (Just remembered I didn’t add *Get Eli’s gift to the list*. Must do that. List growing longer.)
Oh, and before you get comfortable please get a cuppa of your favourite something because I think this post is a little longer than usual.
So Michael and I have never been big on Valentine’s Day as a couple but we’ve indulged our children, especially as it’s been a big fundraising event in their schools over the years.
For the past couple years, we’ve made a big deal of calendar celebrations for Savannah’s sake. She misses the excitement of how schools make days like Valentine’s Day fun. Since she is no longer part of school or any organisation that would be suitable to her needs, we have tried to recreate the events she most enjoyed.
Our close family and friends are quite something and attend Savannah’s parties with their great energy and love. Savannah has a splendid time and replays those moments in her mind or by looking at photos of the special day for months thereafter. It is these parties that compensate somewhat for all that makes her sad.
What makes Savannah sad? The same things that make any young lady sad. Savannah has given me permission to share this story with you told from my perspective and not on her behalf:
Two years ago, out of the blue after a therapy session, she asked her then carer “Why no boyfriend for me?” My mum who was with them at the time, assumed I had discussed having a boyfriend with Savannah. She told Savannah it’s a good idea to discuss it with mum and dad.
I hadn’t had a conversation about a boyfriend with Savannah so when my mum told me, I had no idea where that was coming from. It was hard to hear when my mum also said that Savannah was just unusually quiet that afternoon.
The same evening as Michael and I cleared up the dinner table, we chatted with Savannah about her question. What ensued was one of the greatest heartbreaks I’ve ever known.
Savannah repeated her question “Why no boys like me?” Michael said because most boys, lots of boys aren’t nice enough. He told her that we don’t know why boys were so silly but that she was always going to be our wonderful, beautiful, special lady and we loved her so much. He told her that Eli and her uncle Darren and he would always protect her and make her happy. She said flatly “No boy look at me dad.” I think Michael’s heart broke in an unrepairable way that night.
I tried to make light of it. I reminded Savannah of some of our friends and relatives who are single and happy. I then told her that when you have a boyfriend and eventually a husband, you have to do crazy stuff for them like their laundry. And that’s gross. I heard myself giggle and say I don’t want her to have to do stuff like that. And that guys are more trouble than she thinks.
I sounded calm and light hearted. So I thought. But I was trying to fight back tears. Later I thought off all the things that might have been better to say, but when you feel like the blood is draining out of you and recognise the angry screams you are trying to block out are your own silent screams, nothing I said would have made her feel differently or would have made me handle that evening any better.
Savannah wheeled herself to her room, still quite down. A few moments later we heard her play our wedding song “Paint my love” by Michael Learns To Rock. Michael and I were stunned. She never played that song before. Then we heard sobs.
I’m very brave when my children need me but that night I couldn’t see her like that. I went to my room as Michael knocked on her door and she told him he could come in. He sat with her for a while while she cried. Then she said “Can’t help me dad. My heart broken. Me be alone now.”
Michael helped her into bed then with a deep sigh, he came to bed. We both just lay awake unable to say anything that would make sense of the evening. Wrapped in all those diagnosis, was still a young woman who just wanted to be like every woman:in love and happy. Where was that darn Cupid and is there an arrow aimed at someone for Savannah?
But the world’s definition of beauty and love doesn’t look like our daughter Savannah. It does not help Savannah that any opportunity to make friends independently of Michael and I is also very difficult to organise.
Savannah can’t attend any adult community day facility because nothing is within reasonable driving distance. Mainstream community groups like youth groups aren’t an option because it would mean that Michael or I have to attend because people generally don’t have the time to invest in getting to know her.
Her being in a wheelchair, having difficulty in making herself understood to unfamiliar people and being autistic is just beyond the abilities of most people to comprehend. Rapunzel’s Tower, Sleeping Beauty’s curse and Cinderella’s wicked step-mother would have been far easier for us to deal with than society today.
For our daughter no Fairy Godmother or Knight in shining army will be arriving to make her the Belle of the ball. People aren’t teaching their children that it really isn’t an imposition to spend a little time with her.
Moreover if they did, I’d be afraid because we’ve already been subject to other parents mimicking her speech in jest or repeating her phrases thinking it would be funny to Savannah too. Not funny. Not at all.
So here we are. We celebrate the things that make her happy. We accept what is true for her and what is true about the world we live in. We don’t like it but we make what is in our control… SPECTACULAR for her.
Valentines Day is going to be awesome for Savannah. Later today she and I are going to get her new red clothing for the party and an Alice band. This year she wants an Alice band. She has already made a special gift for her sister and then she’ll work on her brother’s gift….because that’s LOVE. She knows that better than most.
“Love is patient, love is kind. Love always protects, always trusts, always hopes, always perseveres. Love never fails.”
Excerpts from 1 Corinthians 13.