Being a parent comes with it's highs and lows and it's fair share of happiness, sadness and sheer frustration.
Today is a day of sheer frustration. As you guys all know my daughter has disabilities. Most of the time we (me and the ol fella) manage them pretty well. You learn the triggers and avoid them or prepare her for that eventuality. Usually that works. Sometimes it doesn't. I also find as she gets older new triggers appear for her monumental freak outs and sometimes she freaks out for no reason.
Today the freak out is because of.... Well I don't actually know what it's about. But it's frustrating for me as a mother. Not because she's lashing out and saying things she doesn't mean, but because I wish that she didn't feel that way. Distressed angry you name it I wish she didn't feel it. I wish she felt like a child, carefree and ignorant to the world. She doesn't understand why she feels this way and that's frustrating for her. And therein lies my frustration. I wish I could take it away, remove the obstacles that restrains her daily, I'm her mum, I want to make her better.
Disabilities are hard to come to terms with.
I know I have a disability. And was diagnosed with another on Monday at the hospital. It explained my panic attacks too.
When you as an adult are diagnosed with a disability you go through a process of grieving for the person you was, (I wasn't always this way) you go through the stages of grief, anger, depression, denial, you name it you feel it.
As a parent of a child who has a disability it's kinda the same. Niquitas disabilities took forever to diagnose. And when we as parents were consulted on this we asked what I assume most parents ask, "will she get better or grow out of it?" And when you are told no it hits you like a lead weight. You want the best for your children and you blame yourself as a mother. Maybe it's my fault I've done this. When in reality shit happens and it's no ones fault.
I obviously accept my daughters problems and love her the same as my son. I don't see the disabilities I see my beautiful daughter. My amazingly strong inspirational daughter, to me she is normal. Society loves labels though and to get any kind of information on how to deal with said issues we all need those labels.
We as a family try hard to give Niquita the tools to climb those barriers, she will still face those walls but teaching her different ways to cope is a massive problem overcome. Unfortunately I cannot foresee all of these boundaries and that frustrates the hell out of me. To hear the raw emotion from her is heartbreaking, I can't stick a plaster on it and kiss it better, I can't give her calpol for it. It's life skills and problem solving for life, the long haul and to assess everything through her eyes is hard when you don't have those difficulties.
That said today has been difficult for her and for me emotionally but I wouldn't change her for anything in this world.
When I have a crappy day I remind myself that with the rise of the sun a new day begins, that day may be better than today. As long as my children are physically healthy and are loved and cherished nothing else matters those little details are just the small print of life.
Sorry if this is boring but I often write things like this down to remind me that I am strong enough to live through the trials and tribulations of life and come out the other side smiling. My life will always be a roller coaster but I am thankful for the breath In my lungs the life that I have been blessed with which includes my fabulous children. It could be better but I don't care cause it could be far far worse.
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@sammielee46
Hi I'm Sam!!! Kik: sammielee46... "Dance lightly with life" - Jonathan Huie // "Wisdom begins with wonder" - Walt Whitman.
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Comments & Feedback (44)
Beautiful write Sammieππππβ€ children are special in EVERY way, continue to be strong and tell them how very awesome it is to be their parent! β€ππ
So lovely to read this. Our children are amazing and special, no matter what life throws into the mix x
Ah sorry, my Opuss is acting weird and I can't even delete that previous comment π« Anyway, as weird as it may sound I'm thankful for this post. I was feeling extremely down today but this made me see certain things in a new light :) For an opposite point of view, as a daughter who has disabilieties I know that your work will be a lot appreciated, even if it sometimes feels like it wouldn't be. Again, thank you so much for thisπππ
Never ever boring Sam and sending you hugs πͺπͺπͺπͺπͺ did u try the listening program Sam? It helps alot will try to find the link again but u have to get it through an OT. It mellows the ups and downs for her and u as well. It's a brilliant brilliant programme just brilliant really .ππ
@LiSaC64 thank you honey π my kids are my world and it certainly is awesome to be their mum π so thank you and I will continue to tell them that πππ
@wishdreamer thank you, and you are right, the children are our future and they are so very precious πβ€ππ
@Limea wow thank you so much for your lovely kind special comment π I'm glad that it reaches people who can either relate or it helps them in some way shape or form. I'm really humbled by your comment. Truly thank you very very much πππ
@sarahgamal thank you honey π yes she does the listening programme at school, the schools buy the license to the programme and use it solely at school. But I was told by the ot that to gain benefit from it she would need to use it at home also. I have no idea if I can buy the programme for home use but because of the expense of it school won't loan it out to parents for use at home. Thanks for the hugs and the lovely repost sweetie much appreciated πβ€πͺπͺ
A beautiful and brilliant write. Being a carer is one of the toughest (but very rewarding) jobs in this world - 24/7/365 a year.
Awwwww Sammie -humungous hugs to you. This is not a boring write at all -in fact it's extremely inspiring & made me remember we are not alone in our fights in this world, we need the faith & belief that we will get through this -which you certainly have in abundance -you're a strong lady & by the looks of it a wonderful mother. Stay strong, you are doing a marvellous job. Thank you for sharing this remarkable post with us. hugs πππβ¨π
@sjw aw thank you sie, really appreciate your kindness ππ thank you so much and for the fab rp ππ
Thanks for this sammie it's helped and touched me where I am at at the moment. Virtual hugs hun πβ€π
@TheCodsPollocks aw thank you hun π be careful I may have trouble getting through doors tomorrow with an over inflated ego πππ ah I'm not amazing really just a dedicated mummy π thanks I really appreciate your lovely kind words sweetie πβ€
@yikici aw thank you so much for your kind words, you guys are just fabulous. She's the inspiration for my campaign. The website is looking amazing already π Rich is doing a wonderful job with it and its exceeding what I had in mind for it already. Really I'm at a loss for words at your comment, thank you just doesn't express the thanks and gratitude I feel right now. Thank you. You are such a diamond. Hugs to you too πͺπͺππβ€β€
@emjez thank you sweetie I appreciate that more than words can say. Stay strong through the though times they won't always be that way even though they may seem like it now ππ hugs right back at you πͺπͺπβ€
@Burrfoot thank you teddy π just my musings for today. Tomorrows another journey to get through hopefully with smiles and girly giggles π thank you for the repost hun πβ€
@sammielee46 Awww Sammie, now I'm lost for words, that touched a cord with me & means a lot. Life throws us things we think we can't handle, but we can, we just need to remind ourselves just like you are doing. You're truly inspirational. I can't wait to see your website, I'm sure Rich is working wonders on it. I did suspect your daughter being your inspiration for this project -sometimes you need that fuel to get things going. Thank you for being you, it's really special getting to know you. hugs π
@yikici thank you sweetie π I draw my inspiration from her persistence and refusal to give up no matter how angry and frustrated she feels at time! A gutsy 8year old inspires me to reach out to others. To inspire everyone in some way shape or form and to touch lives and make a difference. Rich is amazing. But shhh don't tell him I said that π truly I'm humbled with your beautiful words thank you so very much and it's an honour to get to know you too πβ€
Gosh gosh! Thank you for this.. Rang some bells for stuff in my home and is an encouragement to see other people tackling it all head on. Courageous to share it. Thank you
@wendy3763 aw thank you, I honestly didn't think so many people would find help or encouragement through this post. Stay strong and if you need an ear my kik is on my profile page. Thank you so much honey πβ€
Hi sammy as the father of a disabled child of 6 I share the emotions you have expressed here. I can only say that what you feel about the future for your daughter is only natural. Although grace has many difficulties she fights her battle with overcoming such simple obstacles every day, and it is heartbreaking when she blows a fuse out of sheer frustration. We grieve as parents for their loss and if we our honest our loss too, as no matter how strong we are it leaves it scars on us too. All I can say is stay strong. I apologise if what I am about to say offends but I believe children such as ours were blessed to us because God knew we could cope. As hard as it is for us as a family I thank The Lord every day to opening my eyes to a side of life that I would almost certainly be ignorant of otherwise. I pray that your family will grow with every heartache and challenge faced and your daughter will be so much stronger for it. Never apologise for writing down your grief, challenges or worries. Far better to get them out of your head than to have those things slowly break you down- believe me you don't need that. If ever you need a friendly ear let me know. Thank you for sharing and showing me that we are not alone in our challengeπ
This was a beautiful write, you're so honest and the raw emotion. I wish I knew what to say but you're a great mother Sammie, you're raise her in a loving, supportive environment ππ
@merlin1038 wow thank you for this π I really appreciate your kind words it means a lot. Thank you for the offer of an ear, im sure I may take you up on that at some point and the same goes to you too! Thank you honey ππ
@RichWithey aw thank you Rich π I have my down days but ill always bounce back!! π If I can inspire people or even to some extent just offer some comfort or relief I'd be mega happy π thanks sweetie πβ€
@chickgamer thank you sweetie I really do appreciate that! One day I shall look back on this and it will help me through difficult times. Especially with all the support you fab guys have been offering. Thank you sweetie πβ€
Omg sammie i can't say anything, that is so great, thank you for writing this down, it gaves me inspiration, that was a great text,
@sammielee46. Just read this post, and I understand it completely, in more ways than one, I have two people who depend on me now and sometimes it gets so hard. This is why I enjoy this app so much to just think and write.cheers .πΉπΉπΉ
@marymint it does get hard but when you get it right it's the most rewarding feeling in the world π thank you hun appreciate the read, and I couldn't agree more regarding opuss! It's my form of escape πβ€πΉ
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