I went to the park today with a friend & her two children. One 3.5 years & one just turned 2. As usual when i’m around other children Freddies age I end up feeling a bit down. This little girl was talking, playing, laughing, climbing & running around. Everything I long for Freddie to do, who on the other hand was sat silently in his pushchair. I did try to sit Freddie on a baby swing but it’s not supportive enough so he went back in his chair.
Situations like this are really hard to deal with. Harder than anybody not in my situation could imagine. It’s an eye opener. Your taken out of your own little world and made to realise the extend of your child’s delays. It’s pretty heartbreaking.
While we were there the dreaded question was asked “So whats actually wrong with Freddie?” My response went something along the lines of…
“O well erm hes erm hes got this eerrmmmm… well it’s a undiagnosed syndrome that well eerrr it causes him to have, well it means that he has erm developmental delay and well erm hes got feeding issues, and er hes partially tube fed. Its just a… well it’s just a syndrome thats has no name. But hes fine…hes just fine.”
I then rapidly change the subject whilst being really annoyed with myself for not explaining it properly.
I don’t dread the question because I don’t want to discuss Freddie my problem is how do I explain it properly? Where do I even begin? Some may say it’s nobody elses business, but I feel that the more people I can explain Freddie to the more people who will gain an understanding of him and other children with special needs.
If I tried to explain Freddie properly it could be a bit lengthy…
“Well basically Freddie has a genetic syndrome. He was born with failure to thrive and low set ears, this is an indicator of organ problems, particularly the kidneys, which luckily for now seem fine. He also has dysmorphic features, including Micrognathia, Microcephaly, Trigonocephaly/metopic suture, which may require major surgery soon, adducted thumb, which too is going to require surgery, unusual toes & fingers, high arched pallete & a retro position epiglottis, he also has a gastrostomy button that’s hes partially fed through & takes his 8 doses of medicines through, he has a plagiocephaly, an atrial heart defect, a stridor, a tracheal tug, astigmatism, long sightedness, Esotropia, severe reflux & milk protein intolerance, sleep apnea and has developed epilepsy, they are not entirely sure what type, he tends to jerk alot, has staring spells & has a few shaky moments through out the day, but it’s not categoric of any particular type of epilepsy.. I think that’s everything. O no wait he also has severe global developmental delay. Meaning he is behind with his development & has a low understanding of the world & what he is supposed to do. Hes not walking or talking or crawling or playing as he should. Hes been stuck at the 3-6month age range for about a year now. With alot of help from physios, occupational therapists & speech & language therapists we are hoping to eventually make steps forwards with him. I would like to be able to tell you the name for this syndrome. Unfortunately I can’t, theres no name. The doctors don’t know what it is, for now it’s a bit of a medical mystery. I hope this answered your question?”
To be honest i’m not sure theres ever going to an easy answer to such a question. I’ve been asked it alot before and I never find it any easier to answer. Like i’ve said it’s not that I don’t want to talk about Freddie but it’s not really the easiest thing to discuss. I’d never like anybody to think they can’t ask me about Freddie & I thank all the people who have asked for showing an interest but there really is no short, simple answer to that question.