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The Story of You

This page is to share about Isaac’s story. We hope to inform and inspire.

Isaac is a fun-loving two year old who has two brothers and a sister. Isaac was diagnosed with ROHHAD at the age of two. ROHHAD is an extremely rare and very complex syndrome. It is a life threatening and life limiting syndrome that presents itself after age two in previously healthy children. You can read more about ROHHAD here.

 

 

 

 

This page is an opportunity for us to share parts of our journey with you. Isaac is an incredible human who has already been through so much in his short time on earth. His strength and good nature have shined all throughout his journey. We have so much to learn from him. You can see what we are up to by checking out the blog below. There is an option to subscribe for updates, just click the “follow” button to the right and enter your email address.

A fund has been set up to help ease the financial burden of Isaac’s complex care. Donations (checks should be made out to Isaac LaFavre Fund) can be sent to:

Meredith Village Savings Bank

PO Box 177

Meredith, NH 03253

 

 

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emotions, Grief

The Confusion of Muddle Emotions

We were playing a memory game, but not just any memory game. Thanks to modern technology and a few finger taps on my phone, I created a memory game using our family photos. It was an intentional act to give the children something that would help maintain their connection with their little brother, even when we can’t all be together.

 

So we reviewed the game pieces and talked and laughed about the special memories we captured. We flipped the pictures over and began the game. After the first round, we started another round. That’s when the kids made an incredible observation. They said something felt weird. “Seeing Isaac’s picture makes me happy because I love him. But it also makes me sad because he’s never going to be the same again.” said my 10-year-old.

“Yes. You’re right.” I tell her. “I feel that way too. And it is kind of weird to be happy and sad at the same time.”

We pause, looking at the pictures. “It’s happiness mixed with grief,” she tells us.

And there it is again. The incredibly accurate wisdom of this little human who has only been on earth for 10 years. Then they went back to playing the game and added a new rule: You get extra points when you get a match that has Isaac on it.IMG_4389

And I think about how we try and teach children to identify their emotions. This is no easy task. Most adults can’t do it accurately. And yet, these children are able to be aware enough that they are feeling more than one emotion.

I’m not sure what to call this happiness mixed with grief. My husband and I have double grief to manage. The grief that our lives will never be the same, coupled with the anticipatory grief of what’s to come because of Isaac’s diagnosis. And yet, we are overjoyed that we are all still here. Together. Not the same as before, but thankful we have been gifted more time together.

I observe them playing and am overwhelmed in gratitude that I have the privilege of being gifted these beautiful souls. I get to be their mother. And I feel a sense of knowing that we were all meant to be together. All six of us. We all have something to offer to carry us through this journey. So although we haven’t put our shattered life back together yet, I know the pieces will fit together perfectly.

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Stick With What You Know

I received some good advice about how to talk about everything that we have been through, and about facing our uncertain future. The advice was  to stick with what you know. So I am going to list some things that we do know and don’t know. This may trigger a lot of emotions for you, so maybe have a seat.
We know that Isaac has ROHHAD (Rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation). It is an extremely rare and very complex syndrome. There is no cure. He is not going to “get better” from this. We don’t know how he will respond to the treatments he is receiving. We hope they will at least keep him where he is. Meaning that we can manage his symptoms and he will not get any worse. This diagnosis is considered life threatening and life limiting. Right now Isaac’s symptoms are manageable, very complex and difficult, but still manageable. When I asked the doctors in Boston “Is this considered a terminal diagnosis?” The response was, “We don’t expect him (Isaac) to leave us in the next few months or year. But we don’t know a life expectancy. You would qualify for make-a-wish and things like that.”
This life-limiting diagnosis and the unpredictable nature of it, means we don’t know how much time we get with Isaac. Other patients with this disorder appear to develop their symptoms slower over time, whereas Isaac seems to have progressed quickly with many symptoms all at once. The doctors said this is “concerning.” Of the known ROHHAD patients, there was one who lived to their 20s.
We know that we will bring Isaac home. Probably as soon as a few weeks from now. There is a lot to happen before then. Isaac will receive an IVIG treatment on Monday. It is an infusion that takes 2 days. After that we focus on getting on the supplies, equipment and training necessary to have Isaac at home. It is extensive.
We don’t know how we are going to do all this. But we know that we will figure it out.
Isaac requires assistance with breathing via a ventilator when he is sleeping. Tom and I will receive training on how to operate the machine and care for a child with a tracheostomy. Isaac also needs around the clock care. We are praying that we are able to get nurses in our home for night shifts.
We know that our lives are not going to be the same. Our world has been shattered and we have to figure out how to put the pieces back together.
We know that we are moved by and eternally grateful for the support we have received. The cards, phone calls, messages, checks, donations, meals, gifts, prayers… thank you. The town of Tuftonboro has been donating their sick and vacation days to Tom while he is on unpaid leave. Our community is incredible.
We are thinking a move will be in our future soon. Our tiny home isn’t ideal for our families new needs. We will need to accommodate 2 more adults and Isaac’s needs. My mother will stay with us to help care for the children and hopefully we will have a nurse with us most of the time. If anyone has any leads or info for our area that would be a great help.
Our 10 year old asked the question “Why did this have to happen to him? Why couldn’t it have happened to someone bad instead?” I let her know that nobody has an answer to that question. I also told her that I do know that Isaac came to us because he needed us. He needed a family that is strong, smart, and loving. He needs us and we are the perfect family for him. And being the wise soul that she is, she understood.
Photos: Rainbow from our hospital room and Big sister reading a bedtime story.