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WELCOME TO THE BEG GIRLS' PAGE.

Tayyaba and Zarrar's all three daughters have Sanfilippo Syndrome, also known as MPS III


Sanfilippo syndrome or MPS III is a genetic error of metabolism. Children with Sanfilippo syndrome are missing an enzyme that break down the molecules. Instead, the body stores these molecules in the cells.This storage causes progressive damage. MPS III is a rare disorder with an occurrence of 1 in every 70,000 births.

In the first stage of the disorder it is noticed that the child lags behind and develops behavioral issues.
In the second stage, the child may become extremely active, restless, and often have very difficult behavior and have sleep disturbances. Many like to chew on their hands and clothing. Language and understanding will gradually become lost.
In the third stage the child begins to slow down. They have difficulty walking, falling often eventually losing the ability to walk altogether.

Seizures, joint stiffness, upper respiratory infections, hearing loss, dementia, hyperactivity, aggressive behavior, severe intellectual impairment, partial paralysis, growth retardation and vision impairment are common symptoms.
In MPS children life expectancy is 10-15 years.



This page is made to keep our friends and family updated about our daughters ongoing medical conditions.





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Journal

Tuesday, March 29, 2016 9:20 PM CDT


Inna lillahi wa inna ilayhi raji’un
"We surely belong to Allah and to Him we shall return.”
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“Once GOD Almighty send a beautiful shinny star from above to earth into my arms. Her light seeps through me and became part of me. It was send down to bring me joy but it was only for little while. Then it had to go back. To fulfill God’s higher plans. That was the most painful thing to let it go. Now no longer i can hold you close in my arms but memories of you are true treasure to me that i hold in my heart. I miss you every day more than anyone knows until we meet again my dear daughter.


I have never understood the phrase whenever i heard someone saying “it was a beautiful funeral and always wondered, how a funeral could be beautiful?? But after witnessing the most peaceful journey of Khansa to the other world, starting from her last breaths and peaceful passing to leaving our home one last time on the stretcher, to all the way to her grave, all was perfect in every way. Every single thing went the way I prayed for, what i said it out loud or what i kept in my heart. Allah swt put it right front of me to witnessed that he was with me in every step. (Subhan Allah). It was truly humbling to see the pouring love i felt from friends, family and even from total strangers during her journey from giving her last bath, to making her last clothing to be cut and prepared for her, to the Janaza prayer(funeral), to managing the huge crowed of people came from near and far, to taking parts in filling the dirt of her grave with hands by young and old.

Khansa’s last journey



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Taking care of our needs and providing food for weeks, the overwhelming number of messages, the phone calls from all over the world, cards, flowers and much more..…. People's love and support in our this hard time been truly phenomenal. To learn how much She was loved by so many form all over the world is amazing and make me so proud to be her mother. She was such a delicate flower, an angle who came in this world quietly and and left so quietly but left a huge impact in the world.


Those were hardest and unforgettable moments of my life when she took her last breaths in my arms. Can’t believe its been over a month already. The longest month i have ever lived when every passing minute felted like an hour long and each minute is harder than the last one. Saturday mornings and nights are worst when all is played front of my eyes over and over again.

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Facing her passing away wasn’t the hardest part for me since i believe accepting the decree of Allah SWT but harder for me is now to learn to live without her. Her sweet face always front of me. I truly miss her big bright eyes that always looking at me when i entered her room and her eyes followed me around as i walked around the room. When ever i was taking care of Abeerah or Zahra or even cleaning around the room, always found her looking toward me with peaceful face like trying to say "I love you mom". Miss it so much when ever she waken up from her deep sleep from the noise of suction machine turned on for any of the girls in middle of the night and that anger look quickly turned into a calmer and loving look on laying her eyes at me.

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I really miss taking care of her. Miss changing her, feeding her, bath times and the struggle of cutting her nails which she didn’t like it. Miss combing her hair and make it in to two pony tails and even miss the struggle of cutting her hair. Miss brushing her teeth, wiping her face several times a day, crushing the pills of meds for her three times a day and even bandaging her wounds making sure every thing is super clean and perfect. Miss the most is kissing her upper cheeks closer to her eyes so when she closed her eyes and then try to open it, the touch of her bushy thick eyebrows tickle on my face that always been my favorite.

Your body is away from me, but you are much closer than ever to my heart.

Feel the huge emptiness within me all the time. Heart feels 100 lbs heavier and pain in my stomach haven’t left since. And that stabbing pain when someone mentions her name or when i find medical bill in the pile of the mail with her name on top, or receiving medical supplies that i still have forgotten to cancel or finding her light brown strand of hair stuck behind her bed during cleaning.

People have different opinion on grieving and way of coping with the pain after the loss of a love one. Some just have to force their opinion on you by telling you what and how i should and shouldn’t feel. To me grief is a real thing. It is natural to feel sorrow over loss of a child. Our mind and body have its own reaction to the loss of those who are very close to the heart. This pain is real that i have never felted before or even believed it's existent. Islam teaches us one should turn his attention to Allah and remain patient during hard times but that doesn’t mean we don’t feel pain or we shouldn’t cry. The prophet Muhammad PBUH experience several devastating losses in his life and he did not repress or hide his suffering from his companions. He shed tears in sorrow.

Eyes shed tears and heart grieves but we don’t say anything that is not pleasing to Allah.

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“And know that your (worldly) possessions and your children are but a test, and that it is with God with Whom lies your highest reward.” (Quran 8:28)

Our children are gift from Allah to us and they are Imanah to us to just to love and care for them in the best way possible. I have Khansa for over 17 years without having a single day away from her since she born. The bond we had was very unique, beautiful and just pure love. When i think of my deep deep love for Khansa, I think of the love of our creator for us that is 70 times more than that so he knows what is best for us. I know if HE can take away something that is HIS and HE is the one who gave me in first place, then surely HE can grant me something better in return like he promised. HE grants us so many blessings without even us asking HIM. HE is perfect, most merciful and best of planner.

Surely , Allah takes what is His , and what He gives is His , and to all things He has appointed a time.

There is a reason for every thing happen in our life. Sure our lives are filled with unanswered questions, but as a faithful person we don’t seek those answers than continue to trust our creator and give our best. There are no coincidences in life. Each person come in and then out of our life is for some purpose. When we experience the pain of loss of that person, it changes us in so many ways. We learn to love others more, to become compassionate with others, learn the humility with our prideful kind and it soften our uncaring hearts and it make us a better person.



I miss her terribly for sure. In that part i have no control over but above that I am content. I am very much grateful to God almighty for all the gifts in my life. I'm eternally grateful for all the blessings that HE have given me that makes me appreciate my life so much more every day, for the struggles HE gave me which made me stronger and helped me realized the real purpose of my life. I have learn thru my trials, The depth of awareness, the expanded consciousness, the increased sensitivity, the awareness of my limitations, the tenderness of love, the true meaning of friendship, the appreciation of life and the joy of a passionate and content heart....
Alhamdulillah!!!!

O my Rabb, Help me in the days ahead. I pray that you always guide me and help me to be a better person. Every day to be more focused of my end and be more dedicated into the struggles I am involved in. May my life, from now on, be a sign of ONLY my gratefulness.
May we all return to Him in a state when He is pleased with us. Ameen


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People visiting me always telling me that i should move her belonging and move her bed out of the room and move on with life. Even just the thought of that is like someone hit me with a bat. I am not ready to take that step and not sure when i will be ready to do so. Her tooth brush, school bag, shoes and all her meds remains its place for now.

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Tayyaba Beg

"My tests have brought me to my knees and made me acknowledge my own nothingness, and taught me that Allah is center of my life and therefore I could see him in everything”



For more updates check my Facebook "Tayyaba Beg"









Check out our new brand A.K.Z which is designed in honor of Our 3 Little Butterflies.



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