A story of, for and about Hope. Our princess Honkey Plonk- Hope Olivia. One very special lil lady, who brings so much joy!
Saturday, 24 October 2009
Hope has been on top form the last few days. She's even more of a joy! The seizures *touch wood* are almost non existent (just 4 yesterday, none the day before and none yet today). And she's really coming along.
I was looking after my lil niece on Wednesday, and with it being half term felt I needed to get them all out of the house for the day (for my sanity). So we went to 'jolly roger's (soft play centre). I didn't for a second think Hope would care where we were or enjoy this new place. I was wrong! We all went on the bouncy castle, and Hope absolutely loved it. She was shouting her head off and making her funny woof laughs. Then.......................... She lifted her left arm...... Turned into me......and did a huge smile......she HUGGED me! My heart felt like it could burst! Then she just kept doing it again and again and she was very pleased with herself. And this was not my imagination ; I have witnesses!
Later, max insisted on carting her about;under tunnels, up things, down slides.... I could see people looking. I think they probably along the lines of 'omg that terrible mother is letting that little boy drag that little baby all over the place' because Hope looks a lot younger than she is. Anyway, I'm well past caring what other people think.
That same day, we had a fiasco with boots losing the Honkey meds :0( which led to trying every pharmacy in Swindon and beyond to try and get her epilespy drugs, and then calling the childrens' unit who said to bring her in. They were going to admit her (because she is soooo dependant on these drugs) but fortunately someone was smart enough to track down a stronger adult tablet of her meds which I was then able to dilute. Phew! In bed that same night, she showed me that the hug session earlier was not a one off :0)
Thursday we went to Koalas. Jordan and max came. They had a great time making and playing with playdough. I think it also did them good to see that Hope isn't the only disabled child. Hope's playworkerd were impressed with her alertness and smiles (she usually sleeps during these sessions). We also had an appointment to see Hope's visual impairment teacher. She's a really lovely lady! She hadn't seen Hope for 3 months and said she could see a massive improvment ;0) hope does Now look in the direction of sound, and sometimes looks at things, especially lights when she's in the dark. Hope is just begining to be able to find lights when they are moved (though she's not able to 'track').
Hope also showed that her head control is improving. She can briefly raise her head whilst laid on her tummy!
Last night.... I'm still in shock about it to be honest... She slept through the night!!!!!! At best, Hope has only ever slept 3-4 hours. Many nights she wakes hourly. But last night she went 8 hours! I woke a couple of times to check on her, and this morning I was worried there was something wrong. I'm sure it's a fluke. I hope it's the start of things to come. But I won't hold my breath!
These may seem like teensy achievements. I know in contrast to the norm, they are... But she's not the norm.... She's extra special, and I'm so very proud of her!
I'll leave you with a poem emailed to me by a lovely friend :
A handicapped child has a special life, But with lots of hard work, And plenty of strife. She may not walk or talk or play, In her own world she's locked away. These children are sent from heaven above, They are angels on Earth for us to love. Their time on earth may only be short, But there's lessons from them we value being taught!
Don't turn your back or walk away, 'look at that poor child' I hear you say. 'she is not poor!' I want to yell, She's rich in love and doing well. This poem comes from my heart, This child has made my heart tear apart, But her smiling face, I just have to picture... A precious daughter, who makes lives so much richer!!!!!
To say that Hope was a much wanted baby would be an understatement. Longed for, dreamed of and needed would be closer to the truth. Her big brother Sam died on Christmas day 07, leaving her Mummy, Daddy, big sister- Jordan, and big brother Max sad beyond words. Four months after lil Sam's death, and we were blessed with another pregnancy. Surely everything would be ok this time around? Sam had died of a diapramatic hernia, so knowing the increased odds of having another baby with CDH, we waited before breaking the news to Jordan and Max. At 13 weeks gestation, we were given the all clear and told the baby was a boy. So why was I dreaming about a little girl called Hope? We broke the news to an excited Jordan and Max. This is when the growing fetus was named 'Honk' (will explain this at some point). After 2 weeks of delight our bubble was burst. There was something wrong. Here began our rollercoaster. Baby Hope was diagnosed prenatally with cerebellum hypoplasia and ventriculomegaly. We were advised to...I can't even type it, but obviously we didn't. Fot the first 3 months Hope appeared to be 'normal' - against the odds, but as time went on, it is becoming clear that all may not be as well as it could be. Hope is now globally delayed, and has recently been diagnosed with epilepsy. Did we ask for a special child? No, but we have been blessed with one. Would we turn back time? No. Hope has bought light where there was dark; smiles where there were tears. I'm sure we will learn more from her than we will ever teach her. Who knows what the future holds for Hope. But I swear, I will always do the best by her and she will know love! Update: Hope has recently been diagnosed with a mitochondrial disorder (high lactic acidosis). Due to the fact that any findings will not provide cures or even treatments we have declined further investigations (skin and muscle biopsies seem too much ).
I am happily married to Chris. I am Mummy to 4 beautiful children, but my beautiful 3rd baby is in heaven.
I am in my 5th year of a BA degree in Childhood and youth Studies. I enjoy my children, reading, studying, blogging, facebook, my friends, and if i get a spare moment, my newest hobby is knitting pretty little things for my smallest princess.