Confessions As I Anticipate Grief: part 2

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Lately, I find myself having conversations I never imagined. Like the other day with Jayden and Brooklyn’s palliative nurse. Or the one I had with their sister, Ellie, on the floor of her bedroom.

I guess when two of your kids are labeled “terminally ill” these conversations are bound to happen. For those of you new to our story, we have 3 children, the two oldest, Jayden (10) and Brooklyn (7) have a rare and terminal disease, Sanfilippo Syndrome. Our youngest, Ellie (4) is does not.

This piece is part two of a series of blog posts entitled, Confessions as I Anticipate Grief.

WARNING: Friends in painful places, especially for my “me too mamas,” my Sanfilippo sisters. This is a difficult read. I wouldn’t have read it even a year ago. It just depends on where you are in your diagnosis. Just know it is here when you need it. But, I am 7 years in and this is our reality. A tough, gut wrenching, honest, reality. Sometimes it can be too much. But isn’t it all?

My intention is to share truth. Here’s what I promise if you choose to read. You will see me rise. Just like you are rising. We are not just surviving, but thriving in the midst. Death doesn’t win. We don’t drown. I am tired of trying to avoid the darkness, because light is so much brighter when we acknowledge how dark it is. Thank you for showing up in the meeting for a club you never wanted to join. Since we are all members, may these be our words.  Continue reading “Confessions As I Anticipate Grief: part 2”

taking out the trash: a garbage lesson on Sanfilippo

Ever heard of AV9?
Me neither.
Until Ohio. Until gene therapy headed into the neighborhood of Sanfilippo.
Last Sunday, we packed the kids, the strollers, and the air mattresses. We shipped Ellie to grandma’s and headed off on our seven hour journey to Columbus, Ohio.  We settled into suite 319 at the Ronald McDonald house and thanked God for a good car ride.

Continue reading “taking out the trash: a garbage lesson on Sanfilippo”

#tbt post 1: Jayden

To all my readers:
Thank you so much for taking the time to read and share my blog! I am overwhelmed by the number of comments, likes, and shares.  Your words are such an encouragement to keep writing!
It’s funny. I thought this would be a fun adventure,  but quickly realized after looking for a “first TBT” post this was going to be an emotional ride.  With a regressive disorder, things looked a lot different back then….
So, welcome #TBT!

Continue reading “#tbt post 1: Jayden”

Courage

cour·age. ˈkərij,ˈkə-rij/. noun.
the ability to do something that frightens one.
“she called on all her courage to face the ordeal”
strength in the face of pain or grief.
“he fought his illness with great courage”
bravery, courageousness, pluck, pluckiness, valor, fearlessness, trepidity, nerve, daring, audacity, boldness, grit, truegrit, heroism, gallantry

The color purple represents “courage” in the MPS world. And many days, I don’t think I have much of it.

Like today.

I realized this morning, that I am struggling to “like” one of my children. Sure, I love her, but I am getting so tired of her “naughty” that I find it hard to want to be around her. Parents, can I get an “Amen”? She hits. She kicks. She talks back. She rips paper. She colors on everything. She is constantly seeking food. She antagonizes her sister, and “mother’s” her brother: both induce crying from her siblings. She is not winning the race for “most liked” in the Boyce home these days. She tells me “no” and “stop it”. All the time. And she want what she wants, when she wants it. Of course, she is way better at school. I even tried to sell her to Ama yesterday.

Continue reading “Courage”

Oct 18: Lunch with Kelly in the city

One of the best things about Sanfilippo are the friendships you make with other Sanfilippo parents. We are blessed beyond measure to have the Huberts in our lives. I treasure every moment I get with Kelly so it was a no brainer for Brooklyn and I to go meet her and Liv in the city at Children’s between Liv’s appointments for lunch. Although it was a short visit, it was so good to see them!

Continue reading “Oct 18: Lunch with Kelly in the city”

What do you say?

What do you say to parents of 2 children with a terminal illness? I have been thinking about that. And, as one who now fits in this category, I have learned a few things. I used to be aweful with other people when they were grieving. I asked dumb questions and then probably tried to compare it to some less than comparable experience I went through, and then maybe prayed (or forgot to pray) once for the person. I am ashamed to say that, but it’s true. I am sorry. So, in light of that, I was prompted to write this.

Continue reading “What do you say?”

some misc. info.

I guess our blog has started a bit of a following! That makes me happy! I am glad to hear stories about God working through this already! People I don’t even know are reading and following our family.

Continue reading “some misc. info.”

THE RESULTS

Thank you so much for your ongoing prayers and support. Justin has been really struggling through these weeks and trying to carry the burden of this on his own. Last night, Justin laided our children at God’s feet and God’s peace settled on our hearts last night. I think that is why we had to wait for the results. God is STILL and always will be good. We don’t understand why the results are a part of his will for our family, but we are going to rise above this and love our kids in ways we never could have imagined. We want people to see God’s mighty hand in this. He never promised an easy road here on earth, but he promised he would be with us through this. If we keep an eternal perspective, not a worldly one, we already see this as a blessing. Obviously this is not the future we imagined, but our kids are already showing people the mighty kingdom they will be a part of. All that to say…

Both Brooklyn and Jayden have MPS IIIA / Sanfilippo Sydrome. Sanfilippo Syndrome is a recessive autosomal genetic disease. Children with Sanfilippo Syndrome are missing an essential enzyme needed to breakdown and dispose of long sugar chains in the body called mucopolysaccharides. also known as GAGs. Because these sugar chains cannot be broken down and disposed of they accumulate in the cells causing progressive damage. Babies and young children with Sanfilippo Syndrome appear normal, but symptoms begin to appear with age as more and GAGs build up in the cells of the body. There are 3 stages to the disease. Stage 1 the child begins to lag behind peers and begins to display difficult behaviors. Stage 2 the child losing his/her language, becomes hyperactive, chews on everything, and has sleeping difficulties. Stage 3 the child slows down, becomes dependant for all mobility and loses the ability to chew/swallow. There is no treatment or cure for Sanfilippo. Life expectancy varies.

On Tuesday, we will be hearing from the expert at Children’s and possibly begin a newer drug, genase (I think) that acts a a barrier to the build up. We will meet with them hopfully next week so I have more answers as to our next steps but we feel we are in good hands.

We want our children to live as “normal” as possible. We appreciate you just loving them like you did 3 weeks ago, before we knew this. Would you help us celebrate their lives now? Celebrate with us making memories with our children. Love on our kids. Let’s all not be sad now, we can be sad later. I want to play with my kids, enjoy their smiles, kiss on them, run after them, hold them, and be the best mom I can be. That is my promise to them.

We love you guys…please don’t stop praying. This is just the start to our journey. We need prayers for a treatment and cure, for our marriage to be strengthened, for our patience to superseed natural abilities, pray for sleep, pray for smiles, pray satan never gets a foothold in our home. Pray God always remains at the center of our hearts giving us the strength and grace we need in every moment!

PS…We are going to start by celebrating. On Saturday, October 31, at 6 pm, we are going to host a halloween party in honor of Jayden’s 3rd birthday. We were unable to have a party this summer because we had Brooklyn and for the last two years, we have hosted a halloween party. So, in keeping with tradition, and now my need to celebrate each birthday, we are having a party! It will be a costume party, and the theme is in honor of Jayden’s love for Bob the Builder, Handy Manny, (and Bubba and Daddy) so come dressed as a handy (wo)man! Overalls, flannels, tool belts, hard hats, etc. In leiu of gifts, Jayden is swimming in toys, please bring a dish to pass. We will provide punch, coffee, etc. Also, if you can’t stand the idea of not bringing a gift…please consider helping us finance our trip to Disney this December. We are going down for the national MPS conference and spending a few extra days at Disney around Dec 15-21.

Kids are welcome and can wear their halloween costume too! We can bob for apples and play some games. Maybe even a tractor ride! For those of you who attended in the past, the only character I will be playing is a mom madly in love with her kids.

Love you!

still waiting…

Another day of waiting…
I had the opportunity to start connecting with other moms who have children living with MPS. It is strange how close I feel to people I have only shared a 20 minute phone conversation or an e-mail with. I guess when the path you always thought you were on is detoured, and you meet others on this new path, you don’t have to explain what you see on the new path now, cause they see it. You don’t have to talk about your previous path, cause they’ve been there and were detoured too. You just start walking together. One foot in front of the other.

Continue reading “still waiting…”

no news yet…

Just wanted to post a quick update. We have no news on Jayden’s test results. We are hoping to get some news today. We are prepared to hear he has Sanflippo and which type out of the 4 he has. Well…actually as I write that, I don’t know how “prepared” you can be to get news like that….

Anyway, we are still praying. We are still encouraged by your words. We are still praying for a miracle that the test results will be better than we imagine. We are still holding onto the chance that Brooklyn’s test could be a false positive and that her bloodwork comes back “normal”.

I have found comfort in speaking with Laurie of the national MPS society. She has been holding my hand through this all. I also had the opportunity to speak with another mom who just found out this past July her daughter has Sanfillipo. She is 2 1/2. Her sister, 5 mo. is a carrier but does not have it. She lives in Roscoe…only 20 minutes away from my hometown, Rockford. We plan on meeting up soon. She is a Christian…a little futher into her journey with MPS. I hope our time together will be fruitful.

Keep praying with us. Pray for Brooklyn’s test results. Pray for Jayden’s results to be mild. Pray for our family who is crying with us. Pray for strength for Justin as he is having a difficult time with all of this. Pray for our marriage to be strengthened. Pray for wisdom for the Doctors and for us as we begin our journey living with this. We are not gonna stop and grieve. We are going to live-just better than before. We are going to make memories. We are going to thrive. We are gonna let people see Christ in this, not defeat. We are not gonna let Sanflippo define our children or us, WE are gonna define it.

Thank you for your continued prayer and words of encouragement. God is using you more than you realize. We meditate on the words you send us cause we struggle finding the words ourselves. We love you!