Two years late! πŸ˜±

Although it’s almost been two years since my last post, I was recently contacted by a sweet mama in New Zealand that had found my blog about Liam and found it comforting after discovering that her child has 18 p deletion syndrome. Every once in a while, I get a message like this from someone somewhere that found my blog and was grateful for it, and it always makes me want to start it up again when I have the chance. Life has been so busy these past two years, but with Covid-19 sort of taking over and forcing us all to slow down a bit, I decided that it would be a good time to start it up again on the weekends. Life is still crazy, don’t get me wrong– with Will and I still working full-time jobs and two kids needing to be homeschooled and supervised and going a little crazy without social interactions– but it has also given me the gift of time in a lot of ways, since we don’t get out very often right now.

I won’t make this first post back super lengthy and scare you all off– I know that I can be too verbose when I write for my own good at times 🀭 But I will share that I have been thinking a lot about Liam’s future lately, and I am having some anxiety about it. Last time I posted, he was only 2 and a half and had plenty of time to “catch up,” so to speak. Well, now he is approaching 5 years old, and honestly, in many ways he is still that same 2.5 year old from before. He has had some minor developments, but he is still non-verbal, non-communicative (no sign language), years away from being potty trained we think, and very behind cognitively– I’d say he’s on the cognitive level of a 1.5 year old. He is also quite small for his age, which I guess sort of helps when we’re out and about and strangers approach him. Based on his appearance and abilities, they assume he’s 1 or 2 years old, and I gotta say, it is STILL not easy for me to inform them that actually, he’s 4 years old but has a chromosome abnormality and major delays…. sometimes I don’t even bother and let them just go with their assumption because it’s easier, especially as he gets older. Am I wrong to do so? I like to think not, because not every stranger needs to know Liam’s life story. But I still do feel guilty about it and later wish that I had responded differently.

I’m still searching for the best brief explanation to give strangers that ask about his age– or when he’s acting crazy in a restaurant and it’s obvious that people are annoyed (PS– will we ever go to a restaurant again? 😭)– so I’m looking for tips on that. “Special needs” and “a chromosome abnormality” doesn’t seem to cut it, but “he has 18 p deletion” just gets looks of confusion. Any suggestions?

Until next time (hopefully next weekend), here are some updated pictures of our littles from the last six months. You can see that Liam is still looking pretty much the same, and we still have struggles with his glasses, but he is still as handsome as his sister is beautiful! ❀️

December 2019– the last time they had a proper haircut !
Easter 2020– crazier hair, no glasses (his usual look these days πŸ˜†)

2 thoughts on “Two years late! πŸ˜±

  1. Hi Bailey, Thank you so much for the update. The pictures are darling. I know you will be glad to have this virus thing go away. The new normal is going to be quite different I am afraid. I am still staying in and ave only been out, going to Krogers, once.!i used a mask then. Please continue to forward New Postings. We can always hope and pray that some miracle will be found to treat Liam and others. My prayers are with you and Will and Nell as you give him the love and care he needs. Love you, Opal

    Sent from my iPhone

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  2. Hi Bailey, when we last saw you, you were just dating Will and our Lily was 2. I am Dave and Sandy Smith’s daughter-in-law.

    Since then we have run the special needs marathon as Lily began having seizures at age 3 and has had multiple struggles since. She is 13 years old now we still don’t have a complete understanding of her struggles. Thankfully, we have many pieces to the puzzle but no primary diagnosis. She is more like a 4 year old but I am proud to say she is 90% potty trained, sleeps thru the night, can ride a bike and swims like a fish. She attends a charter school and is in the kindergarten class. She is tiny and, like you, we have been so grateful for the camoflage that gives her, but she is starting to go thru puberty and I have no idea how we will possibly navigate all that. What I do know is in all the uncertainty, God is certain. Having a special needs child provides wisdom beyond your years. Wisdom that can only come from God’s gentle care for parents like us if we choose to draw near to him. There are no easy answers, no solutions to most challenges. Just a steadiness that comes from His promise to never leave or foresake you. On that I draw and take a deep breath and get up each morning. Bless you in this journey.

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