Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. –James 1:17
It was a follow up appointment monitoring my high blood pressure at 38 weeks which lead us down a path of so many uncertainties. I went in assuming it would be a quick check up and on my way I would be sent home to wait another 2 weeks before I would get to meet my second baby boy. But as we all know the way we plan life is not at all what the good Lord has in store for us. God always has a much bigger, more adventurous, and lets just be honest what truly is best for us! At 38 weeks I was told that Jaxon had developed fluid on his brain, heart and abdomen. I was being monitored weekly at this point because of my blood pressure being so high. Doctors couldn’t explain to me why or how all this fluid came about. All that they could tell me was different scenarios of what my husband and I could expect. Hearing multiple scenarios of how things “could” be only lead to one decision and that was to pray. In that moment we knew there was nothing we could do. The only thing that we could do was to let go and let God take over! And that is exactly what we did.
Jaxon was welcomed into the world and was loved immediately. First glance he looked completely fine. Actually he looked exactly like his older brother, they could have been twins. He went for many test after birth and the doctors stated the fluid on his brain and abdomen were gone but there was fluid that still remained on his heart. With many follow up appointments with a cardiologist, at 6 months the fluid was gone and he had a clean health of bill, or so we thought. There were still signs and symptoms that things with Jaxon just weren’t what a typical child might experience. At that time we were referred to a neurologist and after multiple scans and test it was determined that Jaxon had Cerebral Palsy and Torticollis and possibly a stroke in-utero. Doctors couldn’t confirm the quality of life Jaxon would have. Jaxon had little to none muscle tone. We often describe Jaxon at this age a spaghetti noodle because that is exactly how his body moved. Simple things most children could do Jaxon could not conquer. He couldn’t roll, sit, wave, stand and the list goes on and on. At three months we quickly began therapies and researching every avenue to give Jaxon the best life he could possibly have.
It was made clear and quick that Jaxon wasn’t going to let anything get in his way. This child is so determined and so strong willed that he lets nothing hold him back. His first battle he conquered was wearing what seemed like 20 lbs. Plus molding helmet. Then after contouring his head he worked ever so hard at learning to roll, sit, stand, walk, and build core strength to function through daily routines. At about one and half he hit another stumbling block. We began to notice Jaxon choking a lot and not gaining weight. After a series of swallow studies, feeding therapy, speech therapy, and countless other test it was then determined that Jaxon had swallowing issues and diagnosed as failure to thrive. Two surgeries later and hours of therapy Jaxon was placed with a Gtube for nutritional support and eventually gained proper mechanics to begin to eat table food. After receiving the nutrition that he needed this determined little boy thrived like he never had before! There were times when one area such as speech would be delayed but he made up for that in strength of powering out of his walker needed to walk and just left it behind one day. Then we always thought the child would never talk and one day he began to talk and as he says today when he talks to much , “but I need to tell you something, I have to talk.” So we let him talk, even to our last nerve is frazzled because we just want a silence break.
Jaxon entered the school system at the age of three and has done exceptionally well. It was his third year of pre-K we began to notice Jaxon having a hard time being able to shut down and focus on the task at hand. At this time we decided to have more testing done and it was determined that Jaxon has ADHD/ADD. We began treatment for this diagnoses and Jaxon has soared even higher in school. He has been walking to class without his aid, participating on his own and his academics have improved. Jaxon is even sitting in speech therapy with a group of typical peers and being understood!
For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do. -Ephesians 2:10
With every tear, concern, doubt and worry we wouldn’t have life any other way. Jaxon has truly been a good and perfect gift from God as well as our other two children. We are forever thankful for being chosen to raise these kids. God has created them in his image and has prepared them and us to do his work. Although my children may be young and don’t physically see the lord moving and guiding them I know that one day they will. God has walked with us through every step and has humbled our hearts and minds to love others and treat others as he would. To pay no attention to physical and non-physical attributes. He has opened our minds through Jaxon to be able to understand others with a disability. And most importantly to know that we are not alone. That there are many others created by His handiwork in his image that are experiencing the same things that we go through on a daily basis. We considered ourselves blessed! Blessed to have our Heavenly Father, Blessed to have each other and blessed to have a child with special needs! Without this good and perfect gift from the Lord our spiritual walk wouldn’t be were it is today!
