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My husband and I have five children, two with microcephaly (both girls).
I’m finding myself grateful today that one of the girls is partially toilet trained. At seven years of age, that’s definitely behind the average, but she’s still ahead of her nine year old sister. The reason I’m glad is because she really knows how to do number two. I’m telling you that it’s a myth that we all poo once a day. No siree. It can be many, many times. And it’s not fun cleaning that up for a seven or nine year old. My close friend said to me one day after cleaning an accident that she will never ever complain about having to change kitty litter ever again. I’m telling you – I am a blessing to my friends!
You get to learn lots of patience in our household. I get to practice saying the same instructions, not just once or twice but over and over again. ‘Let’s put your shoes on. C’mon Summer time to put your shoes on. Look, here are your shoes. Look – pink shoes. Shoes make your feet warm. Let’s put your shoes on. We need shoes to keep our feet safe. Shoes on. C’mon. Shoes. Shoes. Shoes on.’ And I get to hear responses over and over again. It’s fun to hear how a toy is blue. Blue. Blue. (Yes, it’s blue). Blue. Blue. (Yes, blue). Blue. Blue. We get plenty of time to learn things and practice things, especially patience. Then it’s even more fun when the five year old starts complaining about the repetition and having a meltdown, which causes the nine year old to have a meltdown, which involves a punch to the seven year old, which sets her off too. Then the eleven year old yells at them to quiet down, which helps SO much. And thankfully the thirteen year old is in her room reading. Meanwhile mum is wearing headphones which helps her stay in happy land a little longer.
My friends laugh at me for my ‘calm’ voice. I hold it together, keeping the atmosphere smooth, ‘Summer, it’s breakfast time. That’s OK you don’t have to have porridge. You want yoghurt, sure. Here’s your yoghurt. You don’t want it. No problem. Don’t push it. Gentle with the plate. It’s OK. You’re a blessing Summer. Mummy loves you.’ It’s all calm, no pushing angry buttons here. I’ve learnt from experience. Until the eleven year old whinges and I’m like, ‘Be quiet’ (yelling). All in a split second, the façade drops. And then it’s (calmly) – ‘Summer you want yoghurt now. Good girl. Lovely eating. You don’t want it now. That’s OK. Don’t feed the dog. Sit down.’
I think our household would make excellent reality TV show viewing. Parents could all feel better about themselves and better about their challenges.
In the early days I read that kids with microcephaly are often very smiley and affectionate. Tick tick for our girls. Summer is so expressive with her love. She looks you in the eyes, she says ‘I love you mummy’ and sits on your lap and cuddles for ages. She strokes my head or my back. When I cry she wipes my tears and I get ministered to from her hugs. She has a gift that I can’t really comprehend, but I have been emotionally filled up on many occasions. Others have said the same. Once my husband took her to the supermarket and she saw a homeless man outside. She went up to him and gave him a hug. The man looked a little uncertain, but my husband nodded OK. Later after doing the shopping, she saw the man again and smiled. The man thanked my husband profusely saying it was such a long time since he had been hugged by a child. So innocent. So beautiful. I’m amazed at the gift she is.
Sarah is just such a sweety. I feel like I’m holding a rose and breathing in a beautiful fragrance. She giggles and smiles constantly. She’s naughty too and finds it funny. I’m not sure if developmentally she really understands yet. I can get so frustrated but she just smiles and giggles and says ha-ha in that annoying sing song fashion. She picked that up somewhere and hasn’t let it go. She’s more shy than Summer, but she’s got no problems with volume. Being the number four child, I think she learnt to shout instead of speak.
That’s enough musings for today. More another time…
Hey Kirsten, I am so proud of you, sister, that you found courage to write about your world, your struggles and your little victories… I can’t even comprehend what you and Kris are going through every day, but I am certain that your stories will have great impact on lives of so many others who have to share a similar journey.
Please keep writing. Your blog entries are like windows of hope through which God’s light shines. The more you write, the more windows will open up…
Hugs for you and your crew!
Thanks Alexei. Your encouragement really touched my heart. It’s a very tough journey but also so rewarding. And I know that anyone on the special needs journey needs all the encouragement they can get. I so hope this helps others!
This is such a beautiful glimpse into your world. It’s humbling to think that you were so specifically chosen to be their mother because the unique and special qualities that you have are exactly what they need. It makes me think of that scripture -(my paraphrasing) if God sends you down rough paths, He will give you strong shoes. And I think that of you – He has and will continue to equip you for the journey. You are so strong, yet gentle and beautiful and patient, and the very most perfect mother for the children you have been blessed with. Xxx
Thanks Fenella. You’re a beautiful encourager! Definitely glad for every bit of grace God gives for the job at hand!