My thoughts on being a parent of a special little girl... When you ask me How are you, some days all I have left is Im good. This isnt always the truth. When I say I’m good it means many things. Sometimes, I really am fine. Often I am tired. Another day I might feel broken and too tired to say fine. Or I might be a mess, have cried myself to sleep and not have anything left. Sometimes I feel so overwhelmed by Lucys behaviour/meltdowns, sensory sensitivities, seizures, therapy, hurdles, poor feeding, misunderstandings, hurt feelings and a broken heart. I have fought for Lucy with Todd, and will continue to do so. But being parents of a special needs child is not easy. It has certainly changed us both in very significant ways. People tell us we are amazing parents, that Lucy chose us, that we are so strong, that they couldnt do what we do etc. Honestly, without sounding rude, thats garbage. We didnt get a choice, and you too would do what we do if you too had a special needs child. We are strong because we have no choice. We are Lucys voice, her biggest advocates and we have to do what we do. We fight for her because thats the right thing to do. We fight every day, sometimes to the point of exhaustion. Sometimes just getting to daycare feels like the most difficult task ever. Getting dressed, hair brushing, eating breakfast, putting shoes on, cleaning teeth and getting in the car are very challenging tasks for Lucy. I have shed many tears in front of daycare staff and also alone in the car after daycare drop off because its been such an emotional 3 hours to get there and I am completely spent by the time we arrive. Then I worry all day about how she is coping and whether or not she will have a seizure. I try and stay distracted but its not easy. Lucy doesnt make friends as well as normal children socialize normally or cope with the transitions between activities at daycare as a normal child does. She doesnt often get invited to parties because of lack of friendships and also lack of understanding in how to cope with Lucy. Thats quite upsetting but I do understand. Even us as her parents sometimes feel helpless and at wits end. Im currently seeking out advice from all therapists regarding Lucys extreme sensory sensitivity and poor behaviour at present because we seem to be going backwards again at the moment. She is having meltdowns throughout the day over the simplest of things eg. Time to get in the car. We are using visuals and countdown again to prepare her for whats coming up. This all takes time, preparation and patience patience patience!! Sometimes it feels like 1 step forward, 5 back. Being Lucys mum is the hardest thing Ive ever experienced. I do the best I can and am always searching for more answers and more advice, but its a roller coaster each and every day. We have had some real gains lately like riding a balance bike, standing on one foot and wonderful imaginatory stories told by our girl. But sometimes the meltdowns and tears suck all the good away and leave you feeling so empty and helpless. Dont let yesterday use up too much of today reminds me to keep taking steps forward. Sometimes my dear girl takes all I have and then some. Its not her fault, she has a brain injury, and she cant help the challenges and frustrations she endures each day. But it is painful for her daily, and painful for our hearts as her parents to watch on and endure the pain too. So what do I mean when I say “I’m good? I mean that it’s alright for now. We are doing OK. We have some things under pretty good control and the boat is steady. Im good means Lucy didnt have a seizure today and that I got through the day without having a meltdown myself. It means that maybe today I didnt cry or tears didnt well in my eyes as my heart ached for my child. Im good might also mean I’m too tired to tell you what’s really going on. I may be in real need of company, coffee, and quiet, but I’m at a point where I just can’t get those words out without crying so I just say as little as possible and go on. I may need your company but I also might just need some quiet time alone. I dont expect you to be able to read how I really am, but I do appreciate you asking. Please dont stop asking. We all need our friends and support networks, you are all valued and appreciate. As parents, we all love and cherish our children and all have challenges to face and worries to experience. I dont mean to say my experiences are more important or more difficult than yours. Im just trying to increase the understanding of our journey and to let you know this road is a tough one but we are doing our best to make it less bumpy and decrease the hills and sharp bends so that our hearts can enjoy the downhill runs like they deserve to. We deserve to enjoy each day with Lucy and Ty and not have too many hills to conquer. Looking forward to some super fun butterflies in the tummy kind of speedy down hill runs soon! Love to you all, Good Night xx
Posted on: Wed, 15 Oct 2014 11:11:46 +0000
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