Oh the little things..

Having a challenged kid is challenging to the parents as well.. you go through a lot of big issues that is common to everyone.. the doctors, therapies, looking for rehabilitation centers, looking for help at home especially if you have other kids, running labs and MRIs and a long check list that you go through every month to make sure you have everything covered.. 

But then there are the little things, the very little tiny things that you don't talk about with anyone because they're too trivial compared to the list above but yet they are there everyday like a pecking bird on top of your head.. challenging you to live normal if you can get over these little things.. 

Here's a list of my little things that I learnt to get over with time:

1. buying toys for tuli.. there was a point where I didn't know if tala will even lift her head, so going to a toy store to buy a gift for someone was heart breaking to me.. I used to look at the toys and imagine tala playing with them and laughing and having a good time.. and when a guy from the store would come to me and ask how old is your daughter to show you what's suitable for her and then he would show me a bunch of things that I know tala won't be able to play with.. 

2. Going to birthdays of other children.. at the beginning I used to go, put tala on her stroller and mingle with people in the birthday.. but watching her sitting on the stroller while other kids are running around and playing was way too painful for me.. when I see her watching them and smiling but unable to play with them, it shatters my heart into pieces.. so I stopped going.. her father used to take her but I would sit at home because I can't watch this anymore..

3. Talking about nurseries and schools: I was never a part of this discussion, I used to avoid it.. or just sit quiet and listen until I can't listen anymore and leave... it was very difficult for me to hear other mothers so confused about which nursery they should enroll their kids in while I have no options at all.. I didn't want to feel bad towards others or make them uncomfortable so I just wouldn't participate.. but many times I wanted to tell them "relax, there's no need for all this stress.. you have options.. Thank God for that" 

4. The what ifs: What if tala doesn't walk? What if she walks but looks weird so people make fun of her or stare at her. What if she doesn't go to school? What if she goes to school but she's mistreated and can't defend herself or even worse, she can't talk so won't tell me so I can defend her.. what if I never had pictures of her in a costume party in her nursery like all other mothers do?what if We die? Will anyone fight for her like me and her father would? And this question haunted me a lot when I asked a doctor is there a life expectancy for Tala's case.. he gave me the worst answer ever, he said " no, there is no life expectancy, if they don't have any health issues they live normally but they usually die when their caregivers die because they don't find anyone to take care of them" I felt helpless, I mean I started exercising to be strong enough so I can carry her if she can't walk, I started eating better and take my medications to stay as healthy as possible to be able to take care of her, but death?!! I can't control this, I can't stop it.. so I thought the only solution is for us to die together or she dies first.. this was the lowest point I ever reached in my whole life.. the thought of that was like someone shredding my insides..I felt like a horrible mother to think that.. what can I do? How can I guarantee that she will live a happy life without me?  Then I thought to myself "what can I do? I have to believe that God will handle everything" and I remembered  this sentence "لو أطلعتم علي الغيب لاختارتم الواقع" if you knew the future, you'd choose your reality.. I found comfort in remembering that this is the best situation even if I can't see that now I will see it later.. 

I watched Tala and she showed me that this is the best situation. She showed me how she fights everyday without worrying about tomorrow, the moment tala leaves therapy she starts smiling again as if it never happened and she's not worried that she will go again tomorrow.. so I did exactly the same.. I enjoyed Tala everyday, had fun with her as much as I can.. I stopped comparing her to other kids.. she never compares herself to others, she tries to imitate them and if she can't she still laughs and send kisses and waves bye bye.. so why do I feel so bad?

 I stopped myself from feeling sorry and sad as much as I can.. I understood Tala's limits and started to work around it.. if she can't run, her dad will carry her and run with her.. if she can't hold the toys, we will hold it for her.. if she can't play hide and seek because she can't come looking for me, I will put her behind the couch and I will go looking for her.. 

 I started thinking outside the box, what can I do to make her happy with us and be happy with her.. I bought books about activities that can be done with challenged kids and since then my life had changed completely because I changed the way I'm looking at it.. I accepted Tala's limits and enriched what she already has.. I still had my days where I got frustrated because I'm human but I never let them break me like they did before.. Tala is my bundle of joy, I will not let my dark thoughts change that..