Christmas Day started like any other day. Meghan woke at 7am and as usual in really high spirits. She didn’t know that it was Christmas Day she was just really excited to see me come into her bedroom. She sleeps in a specialist 1 metre high sided padded bed with windows in the side. I lifted her out of bed whilst she screamed with happiness. The same reaction that we have every day of the week.
Meghan is 7 and a half years old. She has cerebral palsy due to Grey matter heterotopia. She has severe development delay and is non verbal and does not understand language either. She has Epilepsy and suffers seizures 3 to 4 times a week, I normally have to administer rescue meds twice a week.
This Christmas morning we did our usual went into the kitchen, Meghan sits in her Panda seat and watches Mr Tumble whilst I prepare her medications, 4 meds for epilepsy, 2 for reflux and 1 for cyclical vomiting, which I administer through her gastrostomy. No sign of a seizure yet, she normally has seizures within half an hour of waking, fingers crossed today she will be seizure free today.
For the past 5 years we have gone away for Christmas, found a secluded cottage somewhere away from the festivities, not being able to bear Meghan not understanding “The most wonderful time of the year”. This year I had said to my husband Mike:
“shall we stay at home and do Christmas”,
we both agreed yes we will do this.
We were so determined to make this the best day ever. I spent weeks organising food, presents, table decorations, we even adorned the outside of our bungalow with christmas lights. We were so looking forward to Christmas hoping that this year would be different and that maybe just maybe Meghan would understand a little. We even bought matching elf t shirts to wear.
At 7.45 am Meghan started to show the all too familiar signs of a seizure. Thankfully this time it wasn’t an aggressive one and wasn’t long enough to administer rescue meds. It still tired her out though and by 8.30 am she was back in bed in her post seizure slumber.
Mike and I sat in the living room surrounded by all of her presents which I had set out so proudly the night before just looking at her on her video monitor listening to her every breath. It’s difficult to explain how you feel watching your daughter sleep after a seizure on Christmas morning knowing that when she wakes she wont know that Santa Claus has been she wont even know who Santa Claus is. The pain and sadness that we feel for Meghan is unbearable everyday.
Mr Tumble And A Beanbag
Meghan is such a happy child, her world is small but she has lots of enjoyment in it. She loves to lie on her beanbag looking at her bubble tube watching Mr Tumble or listening to favourite songs on YouTube. Megan loves us, her Mum and Dad, with an unconditional love that we have never experienced before. Although Megan may not be able to tell us that she loves us but her eyes and her actions speak a thousand words. Being pushed around the town in her wheelchair taking in everything that’s happening around her, is what Megan loves. She also enjoys going to football games even though she cannot see well enough to watch the game she loves the atmosphere especially when our team scores.
Christmas Day is just one day. We have 364 other days to enjoy with Meghan. Meghan is our world and she has taught us what is important in life. All Meghan has to do is make eye contact with us and hold that gaze just for a few seconds that is more important than a lifetime of Christmas days. We feel blessed every day to have such a beautiful child inside and out.
We have already booked to go away on holiday for Christmas next year.