A Mother’s Letter

1

When I was seven months into my pregnancy with Hannah, the doctors told me she had Polycystic Kidney Disease and wouldn’t live for more than a few days. Of course Charlie and I didn’t believe them and when she was born no one knew exactly what her problems were with her kidneys. We then went to another doctor who said she had Ureter problems, they were not open enough and the right kidney had to be removed because it wasn’t functioning at all. The other Ureter had to be opened up for better functioning. Han had that surgery at two months old.

Han was doing great meeting her milestones, etc. She started talking at 18 months and said a few things and then nothing. She was the happiest baby around and a real pleasure for a baby who had gone through so much. Then she stopped talking and went into her own little world. I believe the MMR shot had something to do with it because it happened pretty fast. Han would stare at the television set, get upset a lot and rarely picked up her toys.

It was heartbreaking. It was as if someone took her from us with no idea where she went. At this time we also realized she had a hearing problem and a condition called Glue Ear that required tubes. Of course we all thought this was the problem and once she could hear properly everything would fall into place. Unfortunately, that was not it. In fact Han has required two sets of tubes, Adnoid removal and a Tonsillectomy.

For Han, it’s been a long struggle to become somewhat the person she was before she was diagnosed. She has had early intervention since she was two and a half years old. I mean children with this diagnosis work harder than anyone, just to hang in there. Every milestone they make and they are made much later than a normal child, is a miracle. Parents and siblings have to deal with a lot of added stress. Just a trip to the grocery store can end up exhausting to everyone.

Finally at 11 going on 12 in April, we have discovered that Hannah has a seizure disorder. It is rare and the name of her disorder is Electical Status Epilepticus of slow wave sleep. Similar but not completely the same as Landau Kleffner Syndrome. This has been confirmed by two neurologists who have worked with Hannah. Our hope is that every parent or guardian of a child with special needs makes sure that an EEG is done on their child. There is so much help with medicines for children with seizures and it had taken 9 years for Hannah to finally get an EEG. Children with this syndrome appear normal until about 18 months and then appear autistic which is why Han was given the PDD label. I cannot answer for why not one doctor of the many that Hannah had seen had not given her an EEG. This is why I stress the importance of the EEG and also stress the fact to not give up on your child and seek other answers besides the PDD/Autistic label.

Hannah’s medicines have helped her so much and with this syndrome many times in mid-teens the seizures stop on their own. With God’s help when that happens, it may help Hannah to communicate much better and enjoy a fuller life. Our prayers are that all people with any type of disabilities have a great, full life and be treated with the respect that they deserve.

Hannah is now 17 years old and enjoying her friends and teachers. She is growing into a compassionate beautiful person who has a lot to offer all of us who are open to the lessons she has to teach. As I have stated before, people with special needs are our Angels on earth, their hearts are pure and their souls are from the heavens. God bless them all.

I believe though that Hannah is an Angel and put here on this earth to teach us. She and all children with disabilities are here for that purpose and are some of the greatest teachers on this planet. They strive everyday of their lives to become the best that they can become. For Charlie and I, we will take the lessons learned from Han and make a difference in the lives of others through Hannah & Friends.

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