I remember when Alexander was young.  I’m going to be brutally honest about my arrogance. He was so young and we had years and years to prove people wrong.

The one thing I know for sure Children with WolfHirschhorn Syndrome will fight ….. they are fighters.

I pushed him to eat orally.  He fed from a bottle for almost a year before we lost that battle, but we soon supplemented with only night feeds and moved to baby food.  In fact, we began introducing baby foods at age 4 months, just like my other children.  Alexander did all he could to keep up.  Because Children with WolfHirschhorn Syndrome will fight … they are fighters.

At one point, Alexander would eat a peanut butter and jelly sandwiches and lasagna.  And I couldn’t wait to BRAG to all the G.I. Specialists about how amazing my special baby was.  

Eventually, last spring, he gave up eating orally.  A number of things happened at the same time.  We lost our OT.  We lived in a hotel out of our routine for 2 weeks.  He began to have terrible re-flux that we couldn’t control.  We lost it.

 

And I had to learn to Accept that this is also part of the syndrome.  Accepting my child EXACTLY THE WAY HE IS, in the moment, no more, no less, and I might not change him.

Alexander has not been oral for over a year.  We’ve tried all sorts of things.  Sometimes he lets us in his mouth.  Sometimes he doesn’t.  We’ve used Alexander’s G-tube to feed him until lately his re-flux has become so unbearable that we had to switch him to a JG tube.  At night, Alexander would wake up screaming from the G-tube feed and need to come off the pump.  We were in fear of dehydration.  With the J tube – he now sleeps through the night.  And, as terrible as this sounds, it was a wonderful decision for us.

 

I HATE that we had to make a more medical procedure on my on.  Because Children with WolfHirschhorn Syndrome will fight…. they are fighters.   But, as his Mommy, it is not my duty to force him to change everything about himself.  Missing part of a chromosome changes us in ways we can’t possibly begin to realize.  It is my job to not “force him to fight” – but accept him as he is. It is my job to love that little boy as he is

 

Yes.  He has a JG Tube.  Yes, he “stims” with his little head.  Yes. He puts his hands in his mouth without purpose.  Yes. He sequels in delight at random and (not so random) things. I love them all. I accept them all.  Please let me love and accept you one more day.

 

5 Responses to Acceptance. That hard pill to swallow

  1. Jeff Clear says:

    That a beautiful post – thank you.

    Our Addison is 3yr and 4 months. Still on G Tube night and day. Not big on bottle feeds, but has taken a liking to spoon feeding in small amounts. But as you stated the game is always changing and we move with her, she stays true to the fight but always on her terms.

  2. Heather (Frankie's mom) says:

    Yes. This is a beautiful admission. I think many of us, myself included, went through an arrogant phase as part of our journey, thinking we could beat the odds and then use the success of our children to stick it to the doctors who wounded us with their words. I see angry vindication tacked on to the end of milestone announcements #screwthedoctors, #geneticistsareidiots, etc. Yours is a good reminder to love and accept our children without using them as tools in our own emotional journeys.

  3. Letty says:

    I agree 100 percent. Nathaniel was eating so well orally. Then, because of sudden weight loss due to illness he had a emergency g-tube placed this past Halloween-continuous feed and was able to eat 4-6 ounces of baby food 3/4 times a day. Shortly after that, he was put on the ketogenic diet to control his seizures (which it has!) but we had to cut back on the carb intake. So now he’s only able to eat 1 gram of any meat and 1 gram of either green beans/broccoli….once a day! Since then he wants to eat, but it’s almost as if he’s forgotten how. He just stores it in his palate like a chipmunk and at some point it falls to the back of his mouth and he throws up. I don’t want to give up, but I don’t have many options. It is very frustrating and can understand exactly what you are saying. We gotta love them just as they are. My Nathaniel is definately a “FIGHTER”

  4. shirley bidnick says:

    Kristen, I have just finished reading your Alexander posts. I did read about your seizure sniffing dog a few years ago. How did that work out? I am not sure if you have three children or four. Is there another child between the twins and Alexander? I don’t know how you, and so many others, are able to juggle the needs of a child with WHS and the needs of the other children. Rochelle is an only child. Her needs absorb me. I think all of you who parent other children too, are remarkable.

    I think you are right when you say that we cannot imagine what it is like to be in a body with a messed up chromosome. Sometimes I wonder if Rochelle ever feels well. She has so many different problems, and she is one of the fortunate ones. Some of the children I read about have endured more medical-surgical interventions in a few short years, than most of us will experience in our whole lives.

    Then there is the hearing and visual limitation and hypotonia. A physiatrist once explained to me, that a child with hypotonia must be very smart and focused just to walk. It isn’t easy to get uncooperative muscles and nerves to work together. Each hard won achievement is a miracle.

    Alexander is an absolutely adorable and captivating child. I look forward to reading more about him.

  5. Kristen Faccioli Licari says:

    Hi Kristen. My name is Kristen also. I saw your video on You Tube and just had to look for you on here and was so happy to see that you were on here. Alexander is just beautiful. If you ever have a free moment I’d love to talk to you. As a semi-new Mommy to a WHS child (4 months), your video resonated with me in a way I can hardly articulate. I do not want to list my information publicly, but if you ever feel so inclined, Kevin can provide you with my contact information. I hope you and your family are doing as well as possible. xoxo

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