Did you ever think you will grow up and be the mother of a special needs child? I never thought so. There are so many questions that have run across my mind over these five years and I am proud of myself for letting go and learning to open up about my fears and insecurities. There are times I still cry and wonder why me and most times I am amazed at the successes in this journey. I have learned to be overjoyed at the successes of my boy and not by a measure of the so called children development timeline which is not personalized. As an immigrant originally from Ghana, West Africa, I knew it would be tough explaining how different my child was with his glasses and hearing aides to my community. However, my strength has come from my immediate family and friends who have supported me and being there for me as I cried and laughed during this tough journey of special motherhood.
I was therefore beyond the moon when I connected with Sefakor who like me was Ghanaian but lives in Ghana, same age mate, and has a first born son with the same rare syndrome called Charge Syndrome. Charge Syndrome is a rare syndrome caused by a genetic disorder that can affect the heart,nose, eyes,ears, etc. Charge also affects each individual very differently, therefore each individual needs should be personalized. One thing with these chargers are they are fighters!
In the picture below is my son, my mom, Sefakor, her son, and myself in Ghana this past September. Somehow the little siblings, my daughter and Sefakor’s younger son managed to escape this shot as they were happily playing together. All of us moms laughed, gave each other advice, and bonded over the triumphs and challenges of motherhood. The lack of rehab services is saddening in Ghana, but the resilience of special moms like Sefakor and our families is a testament to the fighting nature of these chargers.
Travelling with two children below 6 years across the world from Ghana to the USA is an experience I will never forget. Exactly 2 weeks ago my children and I flew back from Accra to Minnesota.
I was both excited and concerned how I will manage it before we started our long journey. We travelled on Delta airlines from Kotoka International Airport transiting in John F. Kennedy International Airport with our final destination in MSP Airport and was disappointed at the poor flight service. Beside being able to board early one time and a few age appropriate kids cartoons, no other provisions were made to accommodate the children.
There was not a mention or offer of a kid friendly menu by the flight crew. When I even asked for cheese with bread for my son, that was not available! I am so glad I packed different snacks and brought over an ipad and toy to keep the children somewhat relaxed. There were definitely moments of screaming children with me trying to soothe them and keep them comfortable.
Using the bathroom with two children was harder, but I was lucky to be offered a helping hand by a neighbor on the plane who agreed to watch my little boy when the little baby girl had a few too many toilet accidents.
When we arrived at John F. Kennedy International Airport, it was not smooth and we had to wait in the immigration line to declare our luggage on a kiosk which i did not find friendly then over to a queue to talk with an immigration officer as I listened to my boy continuously requesting to use bathroom. I was livid, but was extremely relieved when we could finally use it.
To make matters worse, I had to pay $6 for a cart with no help as I had to drag 4 suitcases with 2 kids standing besides me, then to another luggage area. Afterwards, it took us another 30 minutes to go through another encounter getting our hand luggage security checked with TSA before we were transported via bus to another terminal to board another plane to Minnesota which was delayed by half an hour. My children were so tired that my son sobbing and wanted me to carry him along with his sister which was impossible. The passengers were much helpful than any of the Delta staff at helping to soothe him. I had at that point missed the call to board the flight with the other parents and none of the staff could be bothered when I came over and stood by the desk. Luckily the passengers allowed the children and I to board back to MSP.
The flight from Accra, Ghana to New York, New York was about 10 hours while the flight from New York, New York to MSP Airport was about 2 and a half hours. It was a total of about 16 hours with 2 children and a brave mama, but we did it 😉💪💪!!!
I really hope Delta improves its services to African countries and make it a bit family friendly despite it being economy class because I was extremely disappointed!! Which flights would you say are family friendly and accommodating of special needs children? Do we have travel first class to be treated better??