I am going to share with you an email that I wrote a year ago. There are many children across the world that have far bigger challenges then Down syndrome. We have absorbed and accepted Larkin’s diagnostics and her path is set. We are carrying her through it all. I hope she walks at some point because she is over 30lbs now! J I am merely offering the view from our path.
Written 8/16/07 after Larkin was diagnosed with Lennox-Gastaut in St Louis at Children’s Hospital.
I have re-named our family. We are now known as the “Rarely” family. I heard that word a lot the last few days. Doctors toss it around like a balloon but it carries a lot of weight in my head.
Rarely does a child fly under the radar like Larkin did all thru my pregnancy. Rarely does a child with Down syndrome not have major physical issues. Rarely does a child with or without Down syndrome develop Infantile Spasms. Rarely does a child with Down syndrome not recover from Infantile Spasms. Rarely does a child with Down syndrome with Infantile Spasms make the move to another diagnosis of Lennox-Gastaut Syndrome. However that is exactly what Ms. Larkin has done.
We have been down at St. Louis Children’s Hospital for the past few days. Great hospital. Great doctors. Larkin’s 24 hour EEG showed that the seizure activity is worse and has made the transition to Lennox-Gastaut. Sounds like a nice French town on the coast where we should be sharing a nice glass of wine. BUT it’s a severe form of epilepsy that causes seizures 90% of the time in the brain. It’s hard to control and it fights against medication. Being medicated is one of my favorite states so I don’t really understand why the seizures persist. That is a joke er well sort of anyway
We had a long talk with her Neurologist. He was gentle and patient and guided us thru the land mines of Lennox-Gastaut. I had already read and knew about this syndrome and it was the very last thing I wanted to hear when the news came. I didn’t faint and I didn’t throw up although I wanted to do both. We made the decision to begin a drug called Felbatol. It can destroy her liver. Cause her bone marrow to shut down production. Cause insomnia (woo hoo) and if it didn’t have the dangerous side affects it would be the leading weight loss drug in the world. So she may lose weight, oh and by the way it may also stop the seizures. So she will be thin, smart AND pretty.
It was a very sobering discussion. He was very clear with us about the side affects on the drugs. He was very clear with us about the affects of the seizures. The D (death) word was used a few times. But I understand doctors have to talk about terrible things when parents are struggling to wrap their heads around issues. I also understand that this little girl is going to live a long, quality life if we have anything to say about it. So the D word had to be put out there but we don’t have to listen now do we. Our options are growing very limited due to the new diagnosis.
The words rare and rarely were used a lot and if tears, hugs and kisses could fix her health she would be good as new.
The R word was first and foremost in all the literature that I read. I get it that the medical field uses this word a lot. Our therapists and doctors use the words “developmentally delayed” because it’s easier on the heart and mind. However the R word is a medical word and it’s profound in the diagnosis. By the time we left the hospital I realized that I no longer have the little bit of tolerance I did have for the R word when it’s used by others as an adjective. I don’t want to hear it. I can’t protect my daughter every single moment of her life but I am sure going to try. Andy has always HATED the word and when it comes out of someone’s mouth he instantly corrects them. I have been more patient…but no more. When you read the words “profound mental retardation” it etches on your heart and mind that this is a PERSON they are talking about. She is a little girl, 22 months old, that doesn’t deserve it to be used carelessly and thoughtlessly by people who should know better by now.
So we wait. She is going to stay on the Ketogenic diet for at least another 3 months. The drugs take time to work and we have to patiently go up in dosage. We waltz with the medications. Up and Down, back and forth. Tweaking things to see how she responds. It’s a long dance but I don’t mind. Larkin has begun to smile and laugh with us. She looks at us and gives us kisses that are licks but we will take them any way we can get them! Having the interaction has made life so much better. It’s amazing when you lose what seems to be small things..just how big they really are.
I was thinking about the words rare and rarely, and how it’s touched us in bad ways so I needed to flip it and think of it as a positive. I have changed so much as has Andy. I swear my DNA changes every time I hear worse news from the doctors. I am more and less patient with certain things. The bones of our marriage are only bound more tightly because of the adversity which is very rare. I need Andy to get thru this and I certainly hope he needs me Chase is a beautiful child who has seen that life is complicated at times and he is, and will continue to grow into, a wonderful human being.
It’s rare to be surrounded by such great doctors and know in your heart and mind they are doing the best for your little one.
It’s rare to be surrounded by family, especially a mother-in-law and father-in-law that make our life so much better by listening, loving and doing everything they possibly can to make the journey easier.
It’s rare to have friends that care so deeply that they actually WANT to read emails like this and keep up on our daughter. I rarely have a great game of golf (unlike Andy) but we both have had a great summer playing with friends. Friends that hold us in prayer. Friends that in the smallest and largest ways show us that she is loved, protected and most of all treated as if she were their own child. Friends that treat her just like any other child and feel that, while she may be special, she isn’t different. Friends that hold us while we cry and give us the laughs we so desperately need. And I only hope that we are those same rare friends in return.
So I’ll take the rare and rarely’s. It all depends on how you look at it. I rarely eat McDonalds but today Chase and I ate his favorite lunch together. As I often tell people….it is what it is, and even if it’s not ok, it’s OK.
I was seriously pondering whether or not to change Zoey’s middle name to “Rare” at one point.Instead I have decided to keep Grace and add,hope,strength,determination,courage,faith and beauty.What do you think? Too long?Always LOVE to read your words,keeps me thinking and feeling.
Guess what. This email, the original from when you sent it last year, is still in my inbox. Don’t you ever think you and the Rarelys are forgotten, my friend. Larkin, you’ve come a long way baby!