I look around and am so proud of everything my son has achieve this far and all I know he will continue to achieve. I wanted that out there so you know, in no way does this mean I am bothered that he cannot do something yet. This is to acknowledge that he wants to do certain things but can’t yet do them and it frustrates him. I know plenty of moms like me are out there, watching their little one struggle so hard or want something so bad and knowing it isn’t something you can make happen. My son has a few things under his belt at the current time he cannot achieve but wants to so bad.
When my son was a baby he wanted to badly to sit up when he was around a year or so old. He wanted it but could not even hold his own head up, let alone really sit up. He laid there a lot and for the most part cried more than any other child I had seen. Crying and screaming was a regular thing. I was happy when he slept and I could rest. He did not cry as much in his carrier as he did in other positions. I told his doctor and he said “babies cry”. Not like this I thought and then said later to him. He would even at times start to fall asleep at around 5 months old, and then scream and wake him self up, then cry more for no reason. The acid reflux meds did not work as well either as I thought they should have. I think the hydro might have been bothering him when he was a little bigger mixed with the acid reflux, he was miserable. Then there came the fact that he recognized there were things in his first year or a little later he could not get his body to do but his brain said do it. He grew annoyed and screamed more. Teething never really bothered him but his frustration I think made him stronger and strive to achieve what he could not. He was full of fight. Sometimes it is a bad thing and sometimes a good. If I could trade a child with no fight for my son, I would not; I think his stubbornness aids in his achievements. I am proud of him.
My son had a shunt placed on the right side of his brain a few weeks before his first birthday. A few months before that, he was diagnosis with what I had already suspected, Cerebral palsy. I still cried thinking of the future due to the fact I always think “how will people treat him” and I though they had better treat him right. I know that sounds odd but I did. Between Neurology every few months, Neurosurgeons every few months, Ophthalmologist once every three months after the first few visits. Physical therapy once a week, occupational therapy once a week, speech therapy once a week, vision specialist once a month, Cerebral Palsy clinic every few months with other testing including, MRI’s Head sonograms and CT scans... It is a wonder we enjoyed the first year or even got sleep. But we did.
We had ups and downs and even if I couldn’t see it things got better. People told us during his first few months of life, still in the NICU, maybe we should give up and while we are hoping, it might be best to let him go. He was given a 10% chance that he could be “normal” with no issues due to the IVH grade 4 bleed and other various issues including underdeveloped lungs. We ignored the warnings and heads of the professionals around us. “Look at him”, he was so tiny he was fighting a tough enough battle of his own, he needed us to fight this one for him. That is just what he did. We said no during pregnancy to signing a DNR and we said no afterwards to letting him go if he needed resuscitation after that. We read to him, he touched him and helped him. While machines beeped in the background we ran the video camera to capture it all. We talked to him through a small plastic box. We loved him with all our heart and soul and prayed to keep him safe. He thrived slowly but he did thrive. When he came off the ventilator the first time, wasn’t long until he as back on it again. The second try was a great one. He made it to a mask… cpap. He did well once he got the hang of it. I was too fast and impatient. We all were but as impatient as he was to get into the world, he just did not want to do what others were doing once they got here. It just wasn’t his time. Blue Lights for jaundice, lasted months, machines lasted just as long. Infections came and went. Blood transfusions occurred more then we liked. Things just drug on for three months. Slowly he made his mark. He hit his hurtles and some got knocked down but he kept going. He had more Bradycardia’s and Apnea’s then our hearts thought they could take. Finally, he lost his lights, oxygen and feeding tubes went away and we got to take him home after one surgery to avoid his Retina’s detaching. But he came home with us three months after his birth on a monitor.
The first year was the hardest we thought. Medically it was but emotionally it would get more extreme, like it does with most kids. Nathan never learned to crawl. When he finally around almost two mastered the art of sitting up on his own and then scooting where ever he needed to (knocking out that pesky need to crawl) he seemed rather content. He did have meltdowns still and defiant moments but was smiling more and more and it was beautiful. My son has shown me much in life is waiting. Patience will get you far. It is hard often to deal with waiting and being patient and at his age now it is very hard. However, with progress it is a must. He learned to walk around 3 ½ years old with no support. He had a walker he used but outgrew it quickly. Talking was better at around three however wasn’t done as much as other children. He still grunted and screeched a lot to get his point across. Age four he was a non stop-talking machine. Talking to my infant had paid off, now how do you shut him off? Joking of course, I would not dream of it.
Later years more diagnosis had arisen. More help and therapy and more struggles for control. He does not like to get go of his own control. This is a good thing and a bad thing. He began school at around almost 3 years old. Being around other children helped him blossom a lot and made me realize just how loving and caring my son was. He worried about the other children a lot and talked about them when he got home non-stop. Not all I could make out however he knew names. My son, who had never really been around other children, now knew the names of several kids and worried about them.
I am jumping around and I do apologize, however it seems to be showing up in order of significance.
I began this entry to explain. I know there are things he cannot do and will get to but each thing that took him extra time to accomplish, also took other kids who picked it up with ease away from him. I am not sure why however other children tend to not want to be around children who cannot do what they can. There are exceptions. I think that children follow are lead more then we realize. When we are impatient and cannot tolerate people who are different, they pick that up and cannot cope as well either. They need people who can function like them without issue. They are not patient to deal with others who have a little more trouble and take a little longer. I do think this is taught in most cases. Some kids break the mold however and exceed what there parents are capable of.
I have overloaded this tonight and I do hope it all makes sense and someone can relate (not that someone has to deal with this as well but that someone who is going through this reads it and knows they are not alone).
My son is now eight years old and wants badly to ride a bike like other children, only he does not do it that same way others do. He still has trouble peddling so many times he pushes with his feet. He still uses training wheels as well as training pants. There are so many things I wish for his future. I hope he learns how to read, write better and spell more. I hope he learns to drive a car, do his math and socialize with the best people. However, just for today, I hope he learns to ride a bike with both feet on the peddles.
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