I know exactly what it’s like to face a scary health problem, but its not with myself, its with my youngest son Jordan who has Cerebral Palsy. Jordan is now 6 going on 7 years old. My pregnancy was a normal one but on the day of his birth, he suffered a prolapsed cord and went an unknown amount of time without the proper blood flow and oxygen to the brain which caused the Cerebral Palsy. Jordan is unable to walk, his transportation is a wheel-chair, he is unable to speak (he is now learning to use a communication device) and has developmental delays and other motor-skill problems. The bulk of his feeds are through a G-Tube because he as problems swallowing (he can eat small amounts of purees).
One day, with fear in my heart for the answer, I asked his neurologist if he would ever be-able to speak. My biggest hope and prayer is to one day be able to hear Jordan speak words. The doctor’s answer was crushing…..he said that because he has yet to learn how to form words that he would never be able to speak.
I could have just accepted the doctor’s answer but instead I told him – thank you for your opinion, but I am going to continue to pray about it and stay positive. Just as when they told me right after he was born that he probably would not live long…. I stayed positive and held on to my faith and prayed. And now we are almost at his 7th birthday. Just like when they said he would never roll over and hold his head up, I held on to my faith and prayed. Jordan is now able to roll over and hold his head up. With prayer and continued therapy, Jordan has overcome so many things that they said he would probably never do.
Truthfully some days are tougher than others and I even question if I can do this… There are times when he throws up for no reason and is unable to keep his feed down from the G-Tube. As a mother it breaks my heart because the bulk of his calories are from his G-Tube. I feel helpless at moments, but all I can do is be strong for him. We are a team and no matter what I am here for him 200%. And just when I am ready to cry and allow the feeling of being overwhelmed to take over, Jordan will smile (he has the biggest and brightest smile I have ever seen) and I am brought back from the edge. Jordan’s smile always come when you least expect it, he doesn’t smile much but when he does its like the sunshine has burst through the room. When he lets out a huge laugh, my heart just melts because regardless of his health issues he is happy and can laugh.
No one really talks about it but it is a hard journey to walk. One I surely would not do without my Jordan. All you can do is take it day by day and when those moments come that you feel all alone in this battle, just remember you are your child’s champion and he or she needs you to stay in the race and fight. Who else could do it better than the parent that loves their child. I love Jordan with all that I am and every inch of my being and I could not imagine him not being in my life. When he reaches for me to get my attention, (I feel a tug at my shirt or arms depending on what he can reach) or when he grabs on to me when we are laying down to pull himself closer to cuddle, those moments are so precious. When he sees me coming with his juice cup, puree and Kids Boost Essential for the G-Tube; he watches what I am doing and smiles. That moment is when I am reminded that this little guy depends on me to take care of him and he knows that he can depend on me. That is when I am re-energized and ready to continue to keep fighting for him, my little butter-cup.
When you’re raising your kids you take for granted those special milestones a child accomplishes: sitting up, rolling over, crawling, standing, trying to feed themselves, first words and etc. With Jordan, his milesstones are harder to obtain because of the CP. With Speech Therapy, Physical Therapy, Tech Class, Aquatics Therapy and Occupational Therapy, hopefully he will reach those goals. I don’t know what his futures holds and I pray that he will one day be able to be independent so that he does not have to depend on others to help him take care of himself once I am no longer here to be that person for him.
So my advice to someone facing a health problem would be to never give up. No matter what you are told by the doctor, keep believing in your ability and inner strength. Regardless of how hard things get or what comes your way, keep fighting. Never give up on the impossible because your power with love, support, a positive attitude and faith in God is what can make it possible.
