Monday, March 12, 2012

Fitting in

When I first brought Jaxson home from the NICU, I was super excited to meet anyone and everyone that had a Down syndrome child.

We got involved with all the Down syndrome groups, and went to many activities.

When I brought my 8 month old baby home from the hospital after spending 4 months on his deathbed, intubated, drugged, it was a much different story. I had brought home a son that not only was now addicted to sedations meds, being weaned with methadone and ativan every two hours, but one that had suffered severe brain damage.
After the first few Down syndrome parties with people asking us why he couldn't do this or that, we just stopped going.
New diagnosis after new diagnosis, just put us farther and farther from our Down syndrome friends.

After I found blogging, I felt ready to jump back in to the Down syndrome world, and met many great new friends.
But I had a realization the other day, after talking to a friend that happens to have a DS child more like Jax. We had been on a fellow DS blog, and realized that we didn't know any of the adorable DS kids on her blog.

Not a single one.

We can join support groups for many different things. Seizure, congenital heart defect, CP, Down syndrome. But not a single one of those groups can totally relate to us. We fall into a very small category of medically fragile, and I'm finding sometimes that can be a pretty sucky place to be.

I know its hard, and maybe even boring, to read updates and what may be going on with Jax.
There's no really good way to help people understand what we go through. He may look good in a certain picture, but what go's on inside that little body is a constant battle. Every breath counted, every heartbeat watched. An ambu-bag hangs on the corner of his bed, because there have been many times I've had to push breathes into my son's lungs. Many times I hold a grey boy, because he's just aspirated, and struggles to catch his breath again.
Many times he should be hospitalized, as a matter of fact, we spent Saturday night in the ER. They talked about admitting him. I said no way.The only reason we were even in the ER was because it was a weekend and we needed testing.

I know when Jax has to be admitted. It may be far after he should be, but I have chosen quality before quantity with Jax.

I'm so thankful for my DS friends that have stuck by us. Who love Jax for who he is, even though its drastically different from the rest.
Now we do have Arina who is more typical, but we can't forget that she wouldn't be in our home if it weren't for her amazing big brother.
The big brother that brought Down syndrome, and so much more, into our lives!

24 comments:

Kristin said...

Well said.
When we adopted Max I was ready to jump on the adoption bandwagon, and I don't know why, but I just don't relate to most 'adoption' moms. Or even 'heart' moms. For me, it's the Ds community (which luckily does have all three)!

Not a Perfect Mom said...

you just made me cry...
Jax is so lucky to have you...

April Vernon said...

Just wanted you to know how much I enjoy reading your posts. I appreciate your honesty.

Lisa L said...

Lacey - I wanted to let you know that I just love reading your Jax updates! I don't have a child with DS or the medical issues that Jax deals with, but Jax has a special place in my heart. I see something so sweet and special in his face! Much love to you and Jax! (and the rest of the family, too!)
Lisa

MichelleH said...

Oh Lacy....my heart aches as we, too, felt the same way following Nate's stroke. I found myself losing empathy for those struggling to come to terms with their child's Ds diagnosis when that was "all" I wanted to have to deal with. Although we still participated in Down syndrome activities, it became increasingly difficult. You are such a wonderful mommy to Jax and he is such a blessing to so many. Prayer for you and your beautiful family. Happy living to all of you!

Patti said...

You know I love you, girl. I so wish we lived closer. You're my hero, and I am praying everyday for Jax and for strength for you too. Lots of hugs and love from Oregon.

Zoey's mom, Heather said...

Right there with you friend, you know that, right?

I often try to figure out which 'club' to join: DS,CHD, stroke, Infantile Spasms/ Epilepsy, CP, and then the kicker:cancer/leukemia. That's a whole lot to choose from but in the end, my heart circles back to this Down syndrome community and all the beauty that it holds. I do feel like I often don't belong. I often feel like an outcast. But I will stick around, just like you, because the magic of the extra chromosome is just too hard too resist.

Amy said...

Lacey - Reading how far your love has brought Jaxson has given me much strength. I know Gabriel, Jaxson and Becky - brought us togther for a reason (with God pulling the strings.

Warrior Mom said...

Lacey:

I too have had this challenge. I often tell people ... DS is the LEAST of Aziza's concerns. It certainly doesn;t affect her life in the same way as autism, tracheal stenosis, missing a lung,grapefruit sized tumor ... etc etc etc. I originally befriended many adoptive DS mommies hoping for guidance, but eventually realized that their journeys were so much differemt than my own. I love follwing both yours and Heather's blogs as they feel more famlilar for me. I love to hear how Jax is doing and cannot get enough photos of him :)

Janet

http://mylittlewarriorprincess.blogspot.com

The VW's said...

I TOTALLY understnad where you are coming from! In fact, besides going to the Buddy Walk each year, I have never done anything with the Ds gruops....because what would Gavin and I do there anyway? We don't fit in.....in fact, we don't really fit in anywhere, but that's the truth of this world. It stinks.....but it is also filled with many times of bliss!

I hate that you feel like you don't fit in because of the severity of issues that Jax has, but I feel so blessed to have 'met' you and Jax! Knowing you guys are out there in this great big world sure does make me feel less alone in this life and that there are others who truly understand. Love and Big Hugs!!!

Rochelle said...

Never get tired of hearing what is going on with any of your kids. Love to be able to pray for you when Jax is having a difficult time.

Lindsay Marie said...

Your post really spoke to me :) I went from being a 20 year old with a blood clot to being diagnosed with May-Thurner Syndrome, a illness that is very rare, but cureable (thank goodness!). I already felt alone because how many 20 year old's get blood clots? Then, to throw in a loop, how many people have May Thurner Syndrome? There are support groups for people with blood clots, but I find that I am not able to relate to anyone because almost everyone else has other medical issues that I don't have and most of them are much older than me. Then you throw in MTS, well....forget it.

I hope you didn't mind me going way off topic, but I guess, in a weird way, I kind of understand. The not fitting in part. Thank goodness for awesome support groups like family and friends :) I know you don't know me well, but I love reading your blog and I love hearing about your entire family. Jaxson is so lucky to have such a great mom :) Every time I see a picture of him I smile because he is a miracle.

Becca said...

I, also, absolutely love hearing about *all* of your children. Can't get enough of them, and I've definitely got a special place in my heart for Jax.

Laura said...

Just had to mention how precious it was to see Jax and Arina in the photos from Miss Z's BD party. Lucky Heather getting to love on you sweet peas.

Anonymous said...

I admire your strength and perserverance. You so inspire to me to be a stronger person!

Thanks ;-)

Rachel said...

I don't think I belong to any circle that fits all MY needs or my DAUGHTER. I think it is just important to have friends. We love hearing about Jax and while most of it is very unrelatable for us, we still care about him and love hearing updates and praying for him when he struggles. I think that is what life is about...friendship and support:)We actually didn't change our circle of friends or join new groups when we had her. She just melded into the group of people that we hang with. To each his own. Keep the faith and keep writing.

angie said...

I also love reading about Jax...and all of your children. I am in that "feel all alone world" too. My daughter Emma has Rubinstein Taybi Syndrome AND she was born with Biliary Atresia and required a liver transplant at 7 months of age (never have the 2 been found in the same child). Sometimes I wonder why?? However, this is what life has given me and I really wouldn't trade her for anything in the world. At times I just wish that I "fit in" somewhere (and her too!)....Thanks for sharing your thoughts!

Chromosomally Enhanced said...

i never jumped in..I have always been reserved and scared...I love your perspective...because it is a members only club for you all...I like your updates it helps me when I am in the hospital with Maddie to know that I have to advocate...that I have to speak up...I learn this through you and others stories...its nice that you have a few you can relate to..smiles

Jeana said...

You are my hero...I hope you know what an influence you are your little man have been in our lives. I will never forget that first outing with other Ds families we came to at your house. That is where it all began for us and we will always go back to that day and your family and how you welcomed us into this "club" with open arms. I can't imagine how hard it is too see your little guy suffer through so much.

Dawn said...

I definitely understand what you are feeling. I have a daughter with Trisomy 9p. There is actually a support group but I left after awhile. My daughter is 22 and still hanging in there no matter how many death sentences the doctors passed.

However, she is very profoundly affected. Moreso than the younger kids in the group. We have the CHD, Lennox-Gastaut seizure disorder, CLL, & now something "new" they are trying to figure out.

None of those parents of younger
T9p kids want to think their child is going to end up like my Taylor so not much interaction. I do believe they missed out on some knowledge though....22 years of medically fragile gives me a lot of info. I supposed I could call that a "perk".

Loved your post and I'm glad you wrote it.

ANewKindOfPerfect said...

We don't fit into any one neat little package either, and that is always hard. I love you guys, no matter what long words are attributed to Jax's conditions. :)

Kate said...

Lacy, I don't think I've ever commented before, but this post drew me out because I SO UNDERSTAND!!!!

One of the girls we adopted from Ukraine has Down syndrome, autism, an autoimmune disease (s-JIA), atlantoaxial instability, a congenital heart defect (that wasn't repaired properly in UA & needs to be redone) and today we added a neural tube defect to the party (tethered cord & syrinx). She is 4.5 years old & functions as an 8-9 month old. To say we don't fit in with the typical Ds family is an understatement.

She is one of our nine kids. Her older brother is terminally ill with a deteriorating brain stem caused by a chromosome abnormality. Having two medically-fragile kids puts us WAY on the outskirts of what others can relate to.

Oh, and our other adopted daughter who has Down syndrome was also recently diagnosed with severe autism & RAD. So yeah, our experience with Down syndrome is NOT what I read in almost every other blog out there. I don't have the kids who thrive with love & attention once they get home. Other Ds moms don't 'get' that. I don't even try to fit in anymore because, like you said, there isn't a group for moms of kids like mine (or yours).

I enjoy your blog so much ~ thanks for this post!

Melissa said...

I love all your kids, just like I love Zoey and Kate's kids too ("met" them on their adoption blog a while back and still follow along on their caringbridge). I'm glad that you all are a part of the Ds community, and I hate that you feel like you don't always fit in, though I can understand. Since it was Down syndrome that really first opened by eyes to all kids of disabilities and differences, the differences in our community are some of those I love the most.

Colleen said...

Jax has an amazing smile! I know what you mean about fitting in because what the boy has is so rare. I often found that we can still relate though to many people who have kids with SN on many different levels.