“I am sorry to pass to you the bad news; unfortunately your future daughter will have lots of disabilities”. With these sharp words, Sa’ida prepared herself to welcome her second baby while she was in her second trimester of pregnancy. Sa’ida was saddened with the news she received after having a regular ultrasound examination to the fetus’ organs, but she determined to give life to her daughter and decided to call her (Hayat), which means “life”.
With the toughness of the doctor’s words which prophesize a deformity, Hayat was born with an arm longer than the other, a 3cm shorter leg, a congenital heart defect, a blocking in the stomach, and looseness in the eyelid. She also had cleft lip palate, which put her mother in a lot of suffering that started with feeding her milk. “I could see the cavity of the nose from the inside and always had the fear of milk reflux which made me cautious day and night” Sa’ida said.
With unconditional love, care and diligence for Hayat, Sa’ida followed up on her daughter’s condition. She accompanied her to undergo several operations, beginning with cleft lip and palate repair at the age of two and a half years old. In addition to the strenuous visits to the doctor and the periodic follow-up appointments to ensure that the two holes in the heart have been repaired on their own with the growth of Hayat.
In her quest to find an adequate centre that compliments her child’s needs, Sa’ida kept looking for a specialized centre in the city of Nablus that can provide her child with the needed rehabilitation services. She was only thinking of Hayat reaching her maximum level of independence but was encountered with no luck at all.
Most of the centers provided basic physiotherapy which did not suffice for Hayat’s complex condition. Sa’ida elaborated “I was eager to get a referral to the Jerusalem Princess Basma Centre (JPBC) due to its profound reputation. I have heard lots of significant testimonies from mothers of children with disabilities in regard to the great contribution the Centre has provided to their children.”
Hayat was referred to receive comprehensive rehabilitation services at JPBC after being diagnosed by JPBC multidisciplinary team that conducts weekly visits to a partner community based rehabilitation centre in Nablus.
Sa’ida was burdened by being the sole breadwinner of the family as her husband is unemployed. Her challenge began with taking a three week vacation from her employer as to escort her daughter to JPBC.
She also felt hesitant from leaving her eldest daughter “Isra’a”, a first grade student without following up on her daily homework.
In addition to this, she was overwhelmed in thinking about who is going to prepare daily meals for her family, in addition to laundry and day-to-day housework; but she insisted to take a decision in favor of “Hayat”. Sa’ida felt responsible towards her child and wanted to empower her with physical rehabilitation.
“I came here hopeless, depressed, and full of negative feelings, but I felt better day by day. I was driven by the power of determination each time I participated in the psychosocial sessions with other mothers”, Sa’ida expressed happily.
Then she continued: “The moment I arrived at the Centre, I was enrolled in the Mother’s Empowerment Programme. Like the rest of the mothers, I instantly joined the psychosocial sessions in addition to the awareness raising meetings held for us and noticed an immense change in my habits towards my daughter. I became more aware of the issues related to my child well-being”.
Sa’ida expressed her satisfaction with the center’s services “Three weeks have passed since Hayat’s transfer to the Centre and I am greatly impressed by her improvement. Hayat received comprehensive rehabilitation services which included Physiotherapy, Occupational therapy, Hydrotherapy, Speech and Language therapy, Music therapy. Besides, Hayat enjoyed full access to the ball pool in the sensory room.
With a great smile on her face, Sa’ida says “I can’t wait to return back home and surprise my husband and daughter “Isra’a” with the huge progress Hayat has achieved here”. She continued “I will teach everyone in the family the new exercises I learned during my period of stay at JPBC”.
“Mama” was the only word Hayat was able to speak! Now however, she happily murmurs some indicative gestures expressing her needs. She even responds to the words like “give” and “take”. Also, Hayat can now sit with a stable and balanced position and she can stand on her tip toes. She can even carry things with both of her hands! Additionally, she started recognizing the visual shapes in front of her. Indeed, when I place two toys in front of her, she prefers one of them and expresses that clearly through her repeated endeavors to reach to the toy she chose”.
Sa’ida concluded “Thanks to God and to JPBC team, Hayat started to have a thriving life!
On behalf of all staff at the Jerusalem Princess Basma Centre, we -at JPBC- extend our heartfelt gratitude for the American Friends of the Diocese of Jerusalem for their generous support to the Mother Empowerment Program.