The beginning:
When I was pregnant with Nathan, Meekeh, My loving husband and I were really
excited about the journey of parenthood ahead. I would liken the feeling to that of planning a long overdue vacation to Mombasa. We had everything we could imagine packed and bought, plans set and we just couldn’t wait to arrive on the other side. Fortunately, God planned for our vacation to be in the Maasai Mara. Its a different destination from what we had planned and envisioned but its still just as beautiful of a place to be.
I had prolonged labour with Nathan, and he did not cry at birth. Nathan’s little butt was spanked but there was still no cry the doctors then resuscitaed him and he was taken straight to the ICU. I was asleep by then So Meekeh and mum had to watch all that happen. I can only imagine how that felt for them.
When I woke up hours later, I could see the hesitation from both eyes to let me know what had happened. I remember feeling a wave of sadness flooding my heart. The moment I had dreamt of for months was not the reality God had planned. Nathan stayed in the ICU for 2 weeks without opening his eyes and with each passing day I got really scared. I must admit that given the circumstance I had already feared for the worst and I found it really hard to believe the doctors when they said that he was alive.
By this time I had been discharged and would have to commute to hospital to see Baby Nathan. I remember the first day I got home without my son and I just couldn’t handle it, on top of it, my house help then was eagerly waiting for Nathan at home. So when I arrived without him she began to hysterically wail because she concluded the worst and she had never seen a mum leave hospital without her child. So as we tried to calm her down , I honestly envied her because that was how I was feeling on the inside; Sad and Shocked. I would cry hours on end each day because I never really understood why all this was happening. I though God must be really unfair.
Two weeks later he was transferred to the special unit section and that is where our break through happened. One early morning as the nurses were giving him a bath he cried!( P.s he still hates water) I remember walking to the special unit and all nurses were super excited to share with me this good news. Nathan kept getting better with every feed and finally we were discharged after a month. The doctors warned us about delayed milestones but they never really put a name to the condition.
Life after Hospital:
When I got home with Nathan, we were all happy to be home but It was a really weird time. I had not fully understood the full extent of the condition and I kept treating it like a flu. Hoping that with the medicines he was on the ailment will come to pass. However being aGoogle mum and watching how the other children who had been delivered around the same time develop, I could feel that something was really wrong.
He never really got the hang of suckling since his reflexes were delayed so we would wake up to cup feed. It was great at home but the number of lectures on breast feeding I received from other mothers who didn’t know what was happening were so many. It was painful, but I was not ready to let the world know what was happening so I would just practice forgiveness. We kept going for therapy as often as we could, bought some of the equipment needed and day by day it dawned on Meekeh and I that things were not changing.
I was lucky to get a house help who loved my son and was willing to grow with him and she really helped to get him where he is now. After she left, I realized how particular I had to be in terms of the house helps I got eg. Must be literate due to reading/measuring of his daily medication, Must be patient etc.
We also had to really cut down on our costs of living since now we had extra bills eg Therapy (3 times a week), Buying his Daily medication, buying his health supplements and Monthly visits to our specialist doctor. He is also on a special diet that we observe very keenly which is costly.
We would also get frequently admitted in hospital and unfortunately the Kenyan insurance sector is yet to get to a point where they cover what they term as Chronic Illness. It was a tough start but God is good and he provided.
Journey to Acceptance:
So months later we finally put a name to the cond
ition i.e. Cerebral Palsy. Our journey to acceptance of this condition was not easy and we are glad we had support from family and close friends. Our mum, Ms. Virginia Magondu was super amazing and key to our journey.
Here are some of the things that made acceptance easier:
- Meekeh and I did a lot of research: Through research we were able to understand the condition better and accept it faster. We now knew how to help him better, the importance of therapy, how to carry out home therapy, foods to feed him etc.in essence everything we could to make sure he is not in hospital as often.
- I had to learn and accept my triggers: I really do my best especially when I am feeling low to avoid places where I have to interact with other healthy children. This is because they serve as a constant reminder of the Mombasa trip I had planned for and didn’t go. I would really find it hard to sit through a church service without crying everytime I saw a child walk or talk especially those who are agemates with Nathan. I was happy for my friends children who would attain their milestones but some part of me would get sad that Nathan had not. So It may have seemed mean or selfish at that time but as time passed by I got strength and joy in being around other children. Now I even play with them and I feel happy.
- I cried alot: This was the best coping mechanism I had. I would take time out daily to just let out what I was feeling inside but I couldn’t express. I really struggled to accept that this was the journey that God had set aside for Meekeh and I and crying brought me a lot of healing. I knew that if I really wanted to be a fantastic mum, I had to make sure I was Okay and this was my way.
- We learnt to forgive others: Unfortunately people are not always sure on how to approach you when you are going through a difficult time so they say some things that to them may seem okay but can be devastating to you. Some keep away from you during that period for one reason or another eg, not knowing what to say, fear that you will be an emotional wreck and mess up with their happy vibes ,Some think space is what you need (it is not) or simply the fear that you will always be having a pity party. Its okay if that happens, we learnt to forgive and forget.
- We took out some Me-time: I would often go for walks, go to events and just sit and listen to music, follow Meekeh to work on his Hells gate trips and ride a bike to the gorge and back, hang out with mum, visit my friends or go camping. Basically it was time where I would for just a few minutes forget what was happening and just be happy as Joyce. I found it healthy since, I would come home missing Nate, my home and I would become super happy. Meekeh loves his job and it is quite therapeutic for him as well.
India:
When he got to one year old we decided to take him to India. Being the Google mum I am, I had read about stem cell therapy and I wanted Nathan to try it out. However due to lack of proper information from the hospital we later found out (While in India already) that the hospital we had visited did not offer stem cell therapy. We did a lot of tests while there and we were able to fully understand Nathans condition better. Nathan is living with a type of cerebral palsy called: Spastic Quadriplegia.
His consulting doctor also sat down for a candid talk about his condition and his version of the way forward. (That’s a story for another day)
Now as we plan to go back in India in July for Stem cell therapy, we must admit that it took a lot of convincing. It took us: Meeting the Neurosurgeon (Dr. Alok Sharma) himself at a conference. Talking to one of our specialist doctors who had visited the hospital and stayed for a week in India with one of his patients and most importantly seeing other Kenyan mothers who had taken their children for stem cell therapy and they could see significant improvements, We have also read all his scientific journals and researched thoroughly on the hospital as well.
Gods Fairness:
I would often think about how unfair God was until I had a seat down with one of my
good friends and it was soon revealed to me on how God had been Just to us. “God can not give you what you can’t handle.” Most people told me this hoping that it would bring immediate relief, I want to say that eventually it did but it took time to accept that this were Gods plans.
A little back story, when I was 6 months pregnant, Meekeh had traveled for summer camp to Bradford woods in Indiana where he had the chance to interact and learn more about special needs children. Therefore, he was able to recognize and accept the situation sooner than I did and he kept saying “Mbus tutakuwa tu sawa, na m-junior pia ako tu sawa venye yuko, usijali” (My girl, we shall be just fine, and our young one is perfect as he is, Don’t Worry)
Looking back I can point out so many such scenarios where I can confidently say that God not only knew about the journey ahead of us but he had also prepared us for it. In this way, I can only say that God fair is not our fair but he is a Fair God. His providence is there and its real, I remember so many time we were so broke but immediately we needed anything for Nathan, and it would somehow appear.
Conclusion:
If you are in the journey: Do not despair for you are not alone, seek medical assistance, join a support group and work on accepting the condition. Get to know your specific association where you will meet a group of parents in a similar situation. You will also learn how to best to manage some symptoms from parents ahead in the journey and your child can have a play group where he won’t be viewed as different and he/she can keep up.
To our friends, family and society: Do your best in whatever sector you are in to make the world a better place for those living with special needs. It is okay to ask how we are doing and how our children are. Distancing yourself is not the solution, we need you not pity. Remember, a friend in need is a friend indeed.
Insurance sector: Please look into accommodating our needs in your cover. Its really heart wrenching that we need to dig deep into our pockets and hold frequent harambees every time special needs children get admitted yet you have the power to help in one way or another. Please do something.
Building owners and hoteliers: Kindly ensure that your spaces are disability friendly, it starts with the service and then a ramp. I remember a time last year where a hotel had refused to assist me with warming Nathans food in the microwave claiming that they didn’t allow food from outside yet they could clearly see that he was a special needs child and on a special diet. They even went ahead to ask me to rinse his dishes at a sink outside the toilets because they don’t allow dishes from outside into the kitchen. I understand the policies, but please be sensitive to special needs parents and children it won’t cost you much.
PS: If you are reading this story before 9th July, join us at Mavuno church Hill City for a fundraising special needs fair dubbed “In my shoes” entrance is just 1000/= shillings and all proceeds shall be used to take baby Nathan to India for Stem cell treatment. You can also send your contributions via M-pesa to pay bill No: 891300 and account No: 12254
Kind Regards,
Meekeh and Joyce (@SweetKappy)