If you’ve read my post A Father’s Journal: Part One – The Darkest Night, you will have been introduced to little Parker Harry. The journal details his delayed start that has hit many hearts and I have received so many messages of support and also hearing so many stories that sing a similar tune across the world. So I am compelled to provide the next instalment. For those that have not read Part One then I recommend doing so before proceeding, click here.
I once read that the divorce rate amongst couples with a cerebral palsy child is as high as 75%. I am not sure if this is factual however as a father and husband I plan not adding to that statistic at all. I realise that this issue is very real but I cannot let this happen as our strength is through staying together. I will not say that we are the perfect family. Far from it and like all relationships there are ups and downs. The fact of the matter is children like Parker Harry require more doctors’ appointments, more care, increased health insurance and special equipment that can be expensive. All this can add stress in the family home if you allow it to. The key is to stick together and always know your friends and extended family are there with full support.
Although Parker Harry was still struggling I found comfort knowing that he and his mum were home from hospital where we could commence our new journey as a family. Our Pediatrician had booked Parker Harry in for an MRI at three months and referred us to some fabulous specialist that immediately concentrated on addressing his physical concerns. These included:
- His eye movement that was erratic and would not fix on anything, they would just wonder blankly into space;
- Feeding issues that involved constant vomiting; and
- His Body tone was low and was as floppy as a rag doll.
In looking back although we were concerned with his sight and physical movement, it did not worry us as we quickly got into a routine that included daily exercises, hope and a lot of prayers. My belief was that his determination would get him through and that great things await.
Our largest issue was his feeding as he could not hold down his food. He was very weak and would get chest infections constantly. A major concern was his weight issues. He would vomit constantly and this would occur at least 4-5 times a night. You can only imagine what this did to our sleeping patterns. Also the carpet became so stained and the bed sheets needed constant washing. The lack of sleep with all the extra stress associated with constant vomiting made us so impatient and angry at times that it impacted the entire family. Frustrations that comes with a sick child were brought to the forefront and at times I know I was so unreasonable. I don’t think it is wrong although I do believe you need realise the anger and learnt from these mistakes.
Despite all the extra work that came with Parker Harry, we had a 3 year old that did not understand. Time with him was even more important and I made a conscious effort during these early days to make him feel the love he deserved.
So busy were we attending to Parker Harry’s needs and requirements three months had passed and the MRI results were in. My wife and I thought that this was routine to obtain more information that would assist with early intervention techniques. However, things for us in 2011 were not going as planned and the MRI could of been one big blow if we let it.
The Pediatrician informed us that the MRI had shown more than Periventricular Leukomalacia (PVL). In fact his brain was smaller, had developed abnormally and there was extra fluid. I can recall the Pediatrician going through all the development issues such as reasoning, planning, parts of speech, movement, emotions, and problem solving.
Maybe I had watched too many super hero movies, maybe it was just my new mindset from the darkest night of my life as I simply responded:
“A brain that is abnormal could mean enhancement of abilities. Maybe he will be more powerful than spider man.”
I am not sure what the Doctor said to this as from that moment I sat dumb struck. For me silence filled the room and before I knew it my wife and I were back in the car about to go back to work. However, I could not bring myself to start the car. We sat in silence then turned to each other shed a tear together and embraced. There were no words but we both knew that this news had not changed anything. Parker Harry was still our beautiful boy that we will support and let his determination get him through the rest of it. The key for us was to give this boy every opportunity and let there be no ceilings.
With this attitude we let him fly and are now witnessing a miracle.
After attending the Royal Institute for Death and Blind Children, Parker Harry passed all tests, his eyes aligned and his vision was found to be within normal limits. I recall the tears of the specialist when she handed over the letter that stated that Parker Harry had normal vision and was no longer eligible for services within the institute. I asked why the tears and she replied:
“A letter like this does not come often but most of all I will not get my regular time with Parker Harry. I love him to bits and he is my therapy.”
Major milestone one: Parker Harry can see!
It was a friend that led to our break through with Parker Harry’s feeding issues. Over coffee my friend advised that not eating, vomiting and constant chest infections were symptoms of Aspiration that is common within dementia patients.
We informed the specialists of this uneducated diagnosis. Everybody thought it was unlikely as he showed no sign of discomfort when swallowing. However, to everybody’s astonishment a swallowing examination (barium swallow) revealed that Parker Harry was aspirating with fluids and soft foods. This meant that his food was going down his air way and settling on his chest. This is what was causing his chest infections.
For the first time we understood the real problem with his feeding issues and we were able to put in a management procedure in place. This consisted:
- Thickening all liquids to the extreme. By extreme I mean 3 times the dose of thickener in his milk and water. This was an expensive exercise;
- Limit soft foods and all food was to be taken with Losec; and
- A small dose of antibodies daily to prevent the chest infections.
It did not happen overnight but ever so slowly it started to work. Some nights he would not vomit others he would vomit 3-4 times a night. The improvement was inconsistent however our management had become routine. Slowly his feeding habits improved and there were less and less night with vomiting. Finally, after 30 months there were no more. The vomiting and chest infections had stopped and we had it and his weight under control.
Although a major milestone, two and half years of no routine has left Parker Harry struggling to sleep during nights. He still keeps us up on a regular basis however we all know it is one step at a time and we take the wins when we can.
Major milestone two: Parker Harry can eat.
As Parker Harry’s weight started to increase so did his strength. Although it seemed to happen so slow, Parker Harry began hitting milestones that seemed so unlikely in the early days. I know these were being hit some twelve months behind normal means but for us it was never about how fast but just getting there.
First he started raising his head, then he started to roll, a big milestone he reached was sitting up unassisted. That came so hard for him.
Major milestone three: Parker Harry can sit up!
Crawling took longer however that happened, then he started to pull himself to his feet and cruising around furniture. When this happened we thought it was just a matter of time before he was to walk unassisted. How wrong we were.
For the next year and a half Parker Harry was with a walker. He would actually prefer to crawl as it was faster and easier for him. For me this was frustrating as it appeared Parker Harry was not going further. His progress seemed stumped and my thoughts becoming more negative. However, everybody had the faith in him to pull through and Parker Harry was to abide. Just before his third birthday, Parker Harry stepped away from the walker, did not crawl and took his first steps unassisted.
Major milestone four: Parker Harry can walk!
So now the big physical milestone is out of the way we have noticed Parker Harry finding his own voice. First it was single words now he is speaking a couple of words and over Christmas 2013 a sentence. It is as if the first three years he was fully focused on the physical and now that he is walking his speech is developing more and more. This is exciting and we know he will get there.
Major milestone f0ur: Parker Harry can talk!
Recently Parker Harry attended a Christmas pageant in the park. All the kids from his day care stood proud awaiting for the music to start. Unfortunately, the ground was sloping and Parker could not find his balance. He fell down and got back up just to fall down again. This continued until the music started to play,. My heart sank for him as he was trying so hard , I was holding back my tears. Just then he raised to his knees, smiled and started dancing with the other kids. He did not care for his limitation in fact he did not accept any limitations. Rather he just went on and did it.
I feel that defines Parker Harry as he always finds his way but never gives up. He knows and so do I that next year he will be standing proud.
So is Parker Harry a normal sleeper, eater, walker and talker. Maybe not, he has his stumbles but one thing he has more than any of us is determination. In fact I would say he has redefined the meaning of determination.
I am a better person to know Parker Harry and I am so privileged to be his father. The truth be told anyone he touches are better for knowing him.
These two parts have been hard to write. In fact so hard I do not have many pictures as I only found photography midway through 2013. I even struggle to find point and shoots of Parker Harry with his walker or the exercising with hula-hoops and other equipment. In fact I could not find any.
At that time , I did not want those pictures as I did not want this story. Maybe a denial of some sorts. However, now that I am older, a little wiser and a lot more understanding this story is beautiful in every way and I am so glad to be part of it. I just wish I could capture that beauty better than I have in this blog. I can’t and never will be able to. However, I am confident Parker Harry will continue to write his own beautiful story. What can be more beautiful than that?
Parker Harry has Hypotonic Cerebral Palsy, however that term is just a tag for understanding. He has no limitations and we will not burden him with a ceiling. There are no ceilings. We are so thankful for the support we have from our carers, educators, doctors, family and friends. They know who they are and they have all made a positive impact. We will always be grateful and hope to assist others.
Fell free to share your story on this blog, it is not just about photography as evidenced here. This blog is mostly about stories. A single picture can display a whole story. I feel the “what is next? picture tells this story.