comments 38

November musings and Maia’s day out

Most days I get home super exhausted. After work, I brave the long commute as I rush to the market to buy food for Maia for the following day, and when I come home I check her seizure diary (she has around 5 seizures a day), feed her, play with her, make sure she is clean and put her to bed. I then prepare her supplements and medicines for the next day.  Motherhood is altruistic.

Having a special child requires more time and attention. Others may wonder why I rarely bring Maia out. Others have so much ‘whys’. It’s really hard to understand when you are not a parent of a special needs child, but I have found comfort in God, my own family and real friends, and of course my PCCS family, no doubt. Apart from the emotional crisis, hubs and I have to work both because all the expenses are not small, if you only knew. Our challenge for now is to determine what’s causing her seizures which would require numerous tests, and it’s not cheap. Maia is diagnosed with seizure disorder(idiopathic), autism, and global developmental delay. At present she is still nonverbal.

There are a lot of factors that can trigger her seizure attacks – noise, no enough sleep, hungry stomach, weariness, diet,  and yes even improper dosage of AEDs. I am also careful not to come home with a troubled heart, because they can sense it and it affects them too. Imagine how you can do it! Her fits can go from 3 to 9 minutes per episode. Those are just the basic reasons why she usually just stays at home.

Sometimes..we take her out. I wanted her to feel the grass again. She may not walk straight, but I know by God’s grace and perfect timing, she will get there.

bh2

with nanny

bh6

bh30

bh1 bh3 bh4 bh5

bh7 bh8 bh9 bh10 bh11 bh12 bh13 bh14 bh15

bh16 bh17 bh18 bh19 bh20 bh21 bh22 bh23 bh24 bh25 bh26 bh27 bh28 bh29

Good night!

I pray that God will take care of everything. He knows what’s best.

Cel

the dreamer mom

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38 Comments

  1. Yes, take her out in open parks! We love BGC, the Greenbelt area and ofcourse the Legazpi Active Park. She’s blessed to have you and I think you more blessed to have her 🙂

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  2. Awww, she’s truly blessed to have you as her mommy! I won’t pretend to know your struggles, but God does. He is always faithful; don’t forget about that!

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  3. ‘God’s power is made perfect in weakness.’ May you always find strength and courage in His presence. 🙂

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  4. Hi mommy! I know bringing up a child with special needs isn’t easy and I admire you for being the strong ang loving mom that Maia needs. I pray that you will always be given enough strength to overcome whatever obstacles may come your way. God bless you and your family!

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  5. Hugs mummy. I feel you. I have a 9 year old brother with cerebral palsy and global developmental delay. And it’s never easy. Especially now that he’s older and heavier and he still can’t even sit. Our family’s lives are adjusting for him, for his needs. Pero I see him as my lucky charm. I’m 20 when my mama had him so he basically grow up with me, feeling nanay ako nun. (hala naiiyak ako! hehe) Basta, be strong. Your baby is very lucky for having you as her mum and you are very lucky for having her. 🙂

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  6. Just always stay strong Mommy. Para sayo siya huhugot ng lakas lagi. Don’t worry, God is always with you and Maia. 🙂 By the way, that Golden Retriever on the 9th photo looks so familiar. I think I know his/her owner. 🙂

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  7. aggietha

    As a mom I can fully relate with your concerns – I hope you get to find out how to control her seizures. And I don’t know you really, but I am sure you are doing a GREAT job being her mom 🙂

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  8. Maia is very pretty! I’m thanking you on her behalf for letting her go out and explore. I have a friend with the same situation and I see how tough it is that she sometimes just wants to hide in the house to protect her child. But kids need to explore and experience the world, special needs or not! So thank you for giving Maia that chance.

    Liked by 1 person

  9. Yes, God knows what’s best, so hold on, He’s got you and Maia. 🙂 We live near Bonifacio High Street, we frequent that place because we only walk going there. One of these days, we might bump into each other. 🙂

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  10. To be honest, I don’t really know what to say but God Bless You Mommy. I have to admire your strength and courage. Just stay strong mommy 🙂 You are truly blessed 🙂

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  11. Okay- I already read this article this morning- but, I cannot comment right away, kasi naiyak ako..:( I cried kasi, bilib ako sa courage mo. I have 4 kids and sometimes, I want to give up na. You such a wonderful person. I will be praying to the Lord to give you more patience and abundant grace. 🙂 Hugs
    p.s I love your photos- she looks stunningly beautiful.

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  12. Just believe and trust God all the time. God knows that you can handle it, stay strong and positive for Maia. Maia is such a beautiful girl, I hope I can meet her soon, para maging playmate sila ni Rhian. God Bless Mommy. 🙂

    Liked by 1 person

  13. …God’s grace and perfect timing…. Just offered a prayer for you and your family specially for Maia, healing graces to her. Be strong Cel and keep the faith that she will get well. BTW, I love your photos.

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  14. I understand you because there are times that I don’t know what to do with my son when he has tantrums, how much more if he has special needs. May God give you more strength to go on and provide your needs. Hugs!

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  15. Big hugs to you and Maia. I am keeping you in my thoughts and prayers. The strength to overcome anything and the will to keep moving forward no matter how tough and challenging life can be ahead.

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    • Thanks Karen, many times before I sleep each night..I’m reduced to tears..but thanks for your prayers. Hugs and love. ♥

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