WE ac­cept that be­ing a par­ent is tough as is. How­ev­er, when an ex­tra lay­er is added, par­ent­ing an “ex­tra­or­di­nary child” brings ad­di­tion­al chal­lenges—ones most are not ex­pect­ing. Be­ing the par­ent of a child with a dis­abil­i­ty car­ries unique re­spon­si­bil­i­ties, stres­sors, and even re­wards!

While each child is unique, af­ter speak­ing with oth­er par­ents, one dis­cov­ers that there is com­mon ground in the chal­lenges that par­ent­ing presents. As par­ents of chil­dren with dis­abil­i­ties proac­tive­ly seek in­for­ma­tion, sup­port, and ad­vo­cate for their chil­dren, they may dis­cov­er frus­trat­ing lim­i­ta­tions that re­in­force a sense of iso­la­tion or ex­clu­sion and stoke emo­tions such as grief or anger. It’s hard when you try to be strong for your chil­dren every minute of the day, and your prover­bial cup be­comes emp­ty.

It re­quires an ex­tra dose of emo­tion­al re­silience, per­se­ver­ance, and re­source­ful­ness. As a re­sult of these and oth­er fac­tors, par­ents seek­ing sup­port for their chil­dren have dis­tinct needs of their own when it comes to SELF-CARE.

WE spot­light a few ex­tra­or­di­nary moth­ers and seek their in­sights as they in­te­grate well­ness at a gran­u­lar lev­el in­to their dai­ly lives and that of their ex­tra­or­di­nary chil­dren.

Pene­lope Bis­soon

I’m the moth­er of two chil­dren liv­ing with Type 1 Di­a­betes. My sto­ry starts with my son, Jawan, be­ing very ill and com­ing down with the flu. I ob­served many signs that alert­ed me that some­thing was wrong, one be­ing that he be­gan los­ing his ap­petite, un­able to eat the things he would nor­mal­ly like to. This made me rush him to the hos­pi­tal.

His blood glu­cose was sig­nif­i­cant­ly el­e­vat­ed and oth­er tests con­firmed that he had Type 1 Di­a­betes. The doc­tors re­as­sured me that Jawan’s con­di­tion was no fault of his or my own and tried their best to as­sist me in an­swer­ing any ques­tions that I had. It was an emo­tion­al time for me, and still is, as I thought about my ba­by be­ing sick. He was on­ly three at the time when he was di­ag­nosed. I asked my­self many times if I would be able to cope with this, not know­ing what to ex­pect. How­ev­er, I came to terms with what I had to face and did so day by day, each day learn­ing from the last.

When my daugh­ter, Tiana, turned three, I im­me­di­ate­ly be­gan wor­ry­ing about her, as my son Jawan was di­ag­nosed at that age. My heart sank when we be­gan ob­serv­ing the signs again, and we ques­tioned and were in de­nial, say­ing that this could not be hap­pen­ing a sec­ond time, but it was.

Each set­back taught me more about the care they need­ed. Di­etary changes, fre­quent blood sug­ar mon­i­tor­ing and dai­ly in­sulin in­jec­tions were on the list of my dai­ly re­spon­si­bil­i­ties from that day on­ward. Jawan and Tiana are now five and sev­en, and as one can imag­ine, man­ag­ing my dai­ly rou­tine is very chal­leng­ing, but I do make some time for self-care. It’s a must!

My ad­vice is:

• De­vel­op a rou­tine that al­lows you some time for your­self. You need this time to med­i­tate and pray to your God and ask Him to be in con­trol.

• Make time for you, as dif­fi­cult as it is - Sit and have a cup of cof­fee, even bet­ter when it is with a friend. Keep a pos­i­tive out­look on life. In­volve phys­i­cal ac­tiv­i­ty and cre­ativ­i­ty, these are my de-stres­sors.

• Al­ways reach out to par­ents in sim­i­lar sit­u­a­tions as they are the ones who will un­der­stand what you are go­ing through and could of­fer a wealth of ad­vice. Some­times you need to stop, ex­hale and cry if you must.

• Do not hov­er over your chil­dren, al­low them to be as nor­mal as pos­si­ble. They need to be able to ex­press them­selves, RE­MEM­BER they are liv­ing with Di­a­betes not dy­ing of it!

Kele Ran­some

My daugh­ter Mya was di­ag­nosed with Sick­le Cell Dis­ease (Hb­SS) at the age of one. For six years she re­ceived month­ly blood trans­fu­sions at the Mount Hope Chil­dren’s hos­pi­tal and for every month of those six years we both ex­ist­ed in a space of anx­ious­ness and anx­i­ety. I re­mem­ber mo­ments when find­ing a vein to in­sert the nee­dle was im­pos­si­ble.

Ex­plain­ing to a 4-year-old the im­por­tance of go­ing through a process that brought such pain, dis­com­fort and dis­tress was heart-break­ing, but Mya was al­ways a strong child. With every trans­fu­sion her strength to with­stand the pain of find­ing a vein and the nee­dles to car­ry the blood be­came eas­i­er.

Dur­ing the trans­fu­sion hos­pi­tal stays we grew clos­er, and I in­ten­tion­al­ly fed her mind and soul with the un­der­stand­ing that her ex­tra­or­di­nary life with sick­le cell dis­ease is in no way a dis­abil­i­ty, li­a­bil­i­ty, or a weak­ness, but it is a life that re­quired more dis­ci­pline, dili­gence, and in­ten­tion.

Mya is now eleven and just faced the SEA, de­spite the med­ical chal­lenges she has en­coun­tered. She has grown more re­silient, more for­mi­da­ble with a greater ap­pre­ci­a­tion of life and a grat­i­tude for her jour­ney. As moth­er of a child with an ex­tra­or­di­nary life, my daugh­ter’s jour­ney has al­so giv­en me su­per­pow­ers that I know I would have nev­er pos­sessed if not for her ex­is­tence. We have both met the high­er ver­sions of our­selves through God’s grace. Our su­per­pow­er; SAPP - Strength and Pur­pose in Pain.

Many ask “How do you cope?”

De­vel­op­ing a self-care plan for a child with an ex­tra­or­di­nary life is no easy task. You go through tri­al-and-er­ror mo­ments, progress and regress sit­u­a­tions with a mul­ti­tude of med­ical and lived ex­pe­ri­ence ad­vice. Even with the same di­ag­no­sis as oth­er chil­dren, I grew to un­der­stand that sick­le cell im­pact­ed Mya’s body quite dif­fer­ent­ly. While there are stan­dard things that hold true for her dis­or­der, I had to pay at­ten­tion to her trig­gers and de­vel­op a care rou­tine that was not on­ly based on med­ica­tion, but mind­ful­ness as well.

Mya’s Sick­le Cell Care Rou­tine:

• Mind­ful dis­cus­sions about her in­ter­nal chal­lenges.

• At­tend­ing to her nu­tri­tion; Al­ways stay hy­drat­ed – 3 litres of wa­ter every day.

• Take med­ica­tion at the same time every day.

• Watch and read sto­ries of chil­dren with the same ex­tra­or­di­nary life.

• Fos­ter friend­ships with chil­dren with the same ex­tra­or­di­nary life

• Ex­tracur­ric­u­lar ac­tiv­i­ties are a must – mu­sic and art, any­thing that al­lows the cre­ative ex­pres­sion.

• Tak­ing care of my­self, so I can achieve all of the above and more for her!

A Hap­py Healthy Mum = Hap­py Healthy Child

Sharon Archie

rom birth, my son El­isha Eli­jah Archie was di­ag­nosed with Cere­bral Pal­sy or Mo­tor De­vel­op­ment de­lay. This would take me on a life jour­ney we nev­er knew about nor were we pre­pared to man­aged. Dur­ing his four­teen years, we saw so many med­ical chal­lenges such as high fevers, stom­ach pains, in­di­ges­tion and re­cent­ly seizures.

There were no spe­cial schools avail­able to ac­cept him due to his im­mo­bile con­di­tion. I tried sev­er­al schools, but on­ly one ac­cept­ed him ini­tial­ly, how­ev­er af­ter one week, his lev­el of care was too de­mand­ing for the school and was bet­ter op­ti­mised at home. Qual­i­ty re­sources to man­age all the needs of a child with Cere­bral Pal­sy are dif­fi­cult to es­tab­lish; from phys­i­cal ther­a­py to oc­cu­pa­tion­al ther­a­py, to the med­ica­tions, to babysit­ting, the list is on­go­ing, even to to­day.

The de­mands of bal­anc­ing work, fam­i­ly life, fi­nan­cial chal­lenges, care for my oth­er chil­dren felt over­whelm­ing and even de­press­ing at times. There were days when many tears flowed, and I felt like giv­ing up.

How­ev­er, my mantra is “Is there any­thing too hard for the Lord to do?” I could have eas­i­ly giv­en up, but I knew my oth­er chil­dren were look­ing on. Oth­er women and men are look­ing for some form of hope al­so. My strong spir­i­tu­al re­la­tion­ship kept me go­ing dur­ing these de­bil­i­tat­ing days, my trust and hope in my Lord kept me ground­ed, look­ing for­ward for bet­ter days ahead.

My strong fam­i­ly net­work, my mom and dad, my two el­der daugh­ters and son and my hus­band, every­one played a role in his dai­ly care, dur­ing my of­fice hours and even dur­ing my church at­ten­dance on a week­ly ba­sis.

I kept trust­ing in my Lord for the strength to con­tin­ue this jour­ney. Join­ing the Women’s Chap­ter of the Full Gospel Busi­ness­men Fel­low­ship In­ter­na­tion­al (FGBM­FI) of­fered the world of sup­port. In serv­ing as the Pres­i­dent of the Women’s Chap­ter, help­ing oth­ers through their dif­fi­cult mo­ments have blessed my life with strength and re­silience to face any chal­lenge that comes my way.

Get­ting in­volved with oth­er par­ents is al­so im­por­tant. This al­lows you to speak freely, hear their chal­lenges and form a net­work where you can share ideas and so­lu­tions. I know many women have no choice but to stay at home and take care of their pre­cious child/chil­dren, but there is hope, con­tin­ue to pray and trust in God, “He will Nev­er Leave You nor For­sake You”. My jour­ney ahead is not a smooth, paved road but with God’s grace and guid­ance, I know we shall over­come, and El­isha Eli­jah will be stronger and health­i­er as we move for­ward as a fam­i­ly.

As a woman, moth­er, wife, leader, I am con­tend­ed to bal­ance mul­ti­ple roles; it takes spir­i­tu­al, emo­tion­al and phys­i­cal strength to face each day when you are re­spon­si­ble for the well-be­ing of a pre­cious child.

My mes­sage to all, “Please let us love them un­con­di­tion­al­ly, let us nev­er dis­crim­i­nate against them, they are the most lov­ing and kind chil­dren you will ever en­counter!”

Chevaughn Joseph

In 2005 when my son Jabez “JB” was just three-and-a-half years old he was di­ag­nosed with a rare form of child­hood can­cer, alve­o­lar rhab­domyosar­co­ma – can­cer of the mus­cle.

The di­ag­no­sis was numb­ing as the sta­tis­tics then was one in fif­teen mil­lion chil­dren got that type of can­cer. His pri­ma­ry tu­mour was in his tongue.

I’ve al­ways been a so­lu­tions-ap­proach per­son’ so we dived right in­to his treat­ment - Chemother­a­py, Ra­di­a­tion and Surgery. JB’s ma­jor surgery in­clud­ed re­moval of part of his tongue and re­built with mus­cle tak­en from his stom­ach.

His jour­ney con­tin­ued and JB bat­tled on, how­ev­er this can­cer was an ag­gres­sive one and spread through­out his body. He lost his bat­tle at the age of five-and-a-half in 2007.

The dev­as­ta­tion is one we feel, even to­day, but is eased by his mem­o­ries and the de­vel­op­ing of the JB Foun­da­tion as part of his lega­cy.

What would have been his sixth birth­day, on Au­gust 2, 2007, the JB Foun­da­tion was launched with the mis­sion to use all our ex­pe­ri­ences, both pos­i­tive and neg­a­tive to help oth­er fam­i­lies of chil­dren with can­cer and to en­sure that no fam­i­ly walked this jour­ney alone. I was not on­ly in­spired by JB’s self­less­ness and com­pas­sion to­ward oth­er chil­dren at the hos­pi­tal, but al­so learned more from him in the two years of his ill­ness than from any­one else in my en­tire life. As a re­sult, I am a much bet­ter per­son to­day.

My ad­vice to moth­ers who are car­ing for a child di­ag­nosed with can­cer is; in spite of your fo­cus be­ing on your sick child and keep­ing the rest of the fam­i­ly to­geth­er, self-care is very im­por­tant. I’ve al­ways main­tained that if Chevaughn, the in­di­vid­ual is not well, men­tal­ly, spir­i­tu­al­ly and phys­i­cal­ly, then Chevaughn the mom, the friend, or the aun­tie will to­tal­ly de­rail.

My so­lu­tion is my re­la­tion­ship with God. I don’t al­ways get the an­swers I want to hear, but rest as­sured, it’s al­ways the right an­swer at that mo­ment. Though the say­ings “God knows best” and “His will be done” are hard pills to swal­low, they ul­ti­mate­ly pro­vide you with com­fort.

I kept a jour­nal dur­ing JB’s ill­ness. Writ­ing was very ther­a­peu­tic for me, it helped me keep in touch with my feel­ings, even if I couldn’t share out loud what I was tru­ly go­ing through for fear of be­ing mis­un­der­stood, writ­ing was a great av­enue to de-stress.

I con­tin­ued writ­ing and re­cent­ly pub­lished the sec­ond part of my six-part chil­dren’s book se­ries ‘Anan­si Goes to Hos­pi­tal’ – where Anan­si will be di­ag­nosed with os­teosar­co­ma - can­cer of the bone. The se­ries will take read­ers on the jour­ney of what hap­pens when a child is di­ag­nosed with can­cer and how it af­fects the en­tire fam­i­ly.

It’s been 16 years since I lost JB to this dread­ed dis­ease, but it is 16 years, The Just Be­cause Foun­da­tion has giv­en sup­port to count­less fam­i­lies and pa­tients and we have much more work to do to raise aware­ness of child­hood can­cer. JB’s love con­tin­ues through every pa­tient helped.