Parenthood. Life. Down syndrome. Faith.

My life changed a lot when I found out my 3rd child would be born with Down syndrome. But then again, it really hasn't changed so much.

We're still living life, trusting God, raising our kids, and loving having a baby in the house.



Saturday, January 24, 2015

I'm not blessed, I'm just lucky

My entire adult life, I've believed that all good things are blessings, gifts from God.  I've always said there's no such thing as luck.  My adult vocabulary barely even includes the word "luck".

Like so many other things, my journey with Down syndrome has changed my view on blessings and luck.

Throughout my pregnancy and birth, I often felt very blessed that Cade doesn't have any serious medical issues.  He certainly could have...Down syndrome very often brings a host of medical problems, including heart defects (he had 5, but required no surgery), leukemia, seizures, and more.

But as I got to know other mothers whose children also have Down syndrome, I was troubled by something.  So many of their children have such a hard time.  I kept feeling guilty...why is their journey so much harder than mine?  Why is Down syndrome no big deal to us, but such a hugely enormous deal to these other families? 

In June, our small community of families grieved after a series of deaths.  Three babies in one week, one from a virus and two from complications after heart surgery.  It was devastating.  And the thought persisted, why am I blessed but they are not? 

To give someone a blessing is to bestow on them a gift.  A statement of praise or congratulations.  It's not something that "just is", it's a purposeful motion from one person to another.  If my son's health is a blessing, then that means God purposefully gifted him with health.  And if I believe that God purposefully gifted my son with health, then I have to also believe that he purposefully withheld the gift from other children. 

This made me feel terrible.  Every time I would comment on a Facebook post that "we were so blessed that his spasms were benign" or "it's such a blessing that his heart defect wasn't serious" I felt like I was punching the other moms. 

I understand the scriptures about why God blesses one person and not another.  Often it's sin, but that just didn't seem to apply here.  None of our babies are old enough to be sinful yet.  Perhaps the sins of the parents?  That doesn't fit either, I'm no more or less sinful than anyone else.  At least one of the families from June are devout Christians like us.  Are our prayers better than theirs?  No, I'm pretty sure they're not. 

One scripture jumps out at me as I try to sort this out.   

The rain falls on the just and the unjust.  (Matthew 5:45)  

In other words...luck. 

I still don't believe in the superstitious nature of luck.  Wearing the same socks every day won't make your team win.  Kissing a coin before dropping it in the slot machine won't make you rich. 

But the random nature of luck?  Absolutely.  Sometimes things just happen.  They happen to all of us.  This baby gets a huge hole in her heart, while that one has a perfect heart.  This child gets leukemia while 10 others miss it. 

Cade is pretty healthy.  We've had some bumps, but they're so minor compared to what other kids go through.  Our journey has been easy and I am so thankful to God for this.  But I no longer say that we're blessed by it.  We're just lucky. 


But always, always, super blessed to have this guy.  He is indeed God's gift to us, purposefully bestowed on us, forever cherished. 

Sunday, January 18, 2015

You're normal, you're not alone. I was there, too.

This is a post for all the new moms, all of you who've just found out that your child has Down syndrome. 

It's also a post for me. 

When I first found out that I was pregnant, I was angry.  I don't like surprises and I don't like being pregnant.  I wasn't sure I even wanted a third child.  So an unplanned 3rd pregnancy did not make me happy.  By 18 weeks, I was still sick and still hadn't come around to the idea of baby #3. 

Then I found out he would be born with Down syndrome. 

This is a dark truth, but one very common.  If you feel this way, you're not alone. 

I was so angry and distressed, I lay awake at night and thought it would be best if I would miscarry.  Some babies with Down syndrome unfortunately don't survive to birth and for a short time, I'd hoped that would be the case with me. 

I told God that I didn't even want another baby, so why on earth would he give me one with a disability?

I told you it was a dark truth. 

I'm not proud of the way I felt.  It only lasted a few nights.  After that, something magical happened: I suddenly felt very mama-bearish about this new babe and suddenly I wanted him desperately because he had Down syndrome.  But I digress...

To you, New Mom...if you feel this way, if this ugly thought has entered your mind...forgive yourself.  It's okay.  It's normal.  I think most of us felt that way at least briefly.  The thought will fade and you'll still be a wonderful mother to your newest blessing.  Even if you feel that way for a long time (and some do) it doesn't mean you're a horrible person, even though you're probably feeling that about yourself. 

I guess my best advice is this:  allow yourself to feel how you feel.  Give yourself that grace.  Go through the ugliness, I promise there is healing on the other side.  Down syndrome is not the end of the world, but when you first find out, it feels like it's the end.  It's a lot like the stages of grief.  But the destination is way more fun...at the end of this journey you get a baby!  An amazing little child whom you'll love instantly.  A child who will enchant you, make you laugh, and shatter every stereotype you've ever held. 

To me...I forgive you.  I forgive you for the way you felt during those first scary nights.  I see the way you love your son, the way he's your reason for getting up every day.  (Literally.)  I forgive you for the tears you shed because you didn't know any better.  I forgive you for yelling at God.  I forgive you for throwing things.  For smothering sobs in your pillow.  I forgive you for not loving him instantly.  After all, you had no idea that you were having Cade.  If you'd known all along that it would be Cade, you'd never have had a moment's worry, because you'd have known that Cade is incredible.



Thursday, January 8, 2015

I am THAT mom

Long, long ago, like 21 months ago, I never questioned doctors.  Clearly they know more than I do and I pay them to know more.  When nurses called and said that all test results were normal, I didn't question it.  I never once considered ordering the lab results myself so I could see the actual values.

If a doctor said jump, I jumped.  If a doctor said don't bother, I didn't.

It never occurred to me that the doctors might not always be experts.

But then there was Cade.  Even though I was a mother before him, he changed everything.   I needed to know all that I could about my little boy.  And I was given the advice by a former SSI judge to obtain every scrap of medical records.

The two created a new me.

After Cade, I've learned to question everything.  Not because I don't trust our doctors.  I do.  I trust them implicitly.  But I've also discovered that a special needs mama is an absolute expert on her child and often, her child's condition.  

At first, getting his medical records was fascinating.  Reading the doctors' notes was like sneaking into the back room and eavesdropping.  It was a novelty sorting through test results with their endless acronyms and numbers.

The more I learned, the more I wanted to know.   WHY was his white count often low?  Why is his alkaline phosphatase over 1000 when the range is less than 300?  What are these petechiae all over his body?  (yes, I can even spell it now!)  (And no, he doesn't have leukemia.  Whew!)

And the more I knew, the more I knew, if you know what I mean. 

I now know that Cade's ear canals are too tiny to see into, but you'll have your best chance in the left ear.

Drawing blood from a vein is easiest in his left inner ankle, but I have to get a doctor's order to draw from that location.

He eats 750-800 calories most days.  300 on days when he doesn't feel like eating, 950 on days during growth spurts.

I've had more than one doctor laugh (in a good way) and tell me that I really know my kid.  I've had others that thank me for making their job a little easier.  And I've had some that blow me off and check the right ear, even though it's fruitless and Cade hates it.

We've had mostly wonderful doctors, but sometimes their notes are inaccurate. I've realized...they're human.  Sometimes they make mistakes.  Sometimes they don't know everything. 

With all that I've learned about Cade, I've learned more about doctors and the industry of medicine.  And how important it is to speak up and be an advocate.

Last lab draw, the doctor handed me the lab orders.  I shuffled through them and realized 2 were missing.  He left to go print them, and while he was gone I counted through them again, ticking them off in my head.  Two more were missing.  I only caught the error because I knew what needed to be ordered and I knew what all of the labs were for.  The doctor was very happy to go print the others and I was happy knowing I'd saved Cade from having to return to the lab for another poke.


Cade's Care Notebook helps me keep everything straight.

It's been an interesting journey, becoming a medical advocate.  But the love for my son makes every phone call worth it.  He's my Cade!







Thursday, January 1, 2015

How do you?

The time has come, transition is beginning.  I am asked to write a few lists for you, things you should know.

Please know this...I love your son, and because I love him, I want you to succeed.  I want you to be a good mama to him.  I will help you wherever I can, just ask.

I'm sitting here, staring at a blank sheet of paper.  I'm supposed to list things about your son, like how he likes to be soothed and what to do when  he wakes at night.  But the page is still blank.  I can't get my mind to work...how do you tell a mother all the things she should know? 

How do you explain what makes his hurts go away?  What soothes him to sleep the best?  How it takes three tries to get food into his mouth, but on the third try he'll decide he likes it and finish the rest?  How his eyes sparkle in the morning as if he's planning a day of mischief.  How he lays his cheek against yours when he needs a hug.

How do you?

I can't seem to adequately put into words how cute he is when he splashes in the bath, or how he flaps his arms and says "mama" when I walk into the room.  How I hope he'll do that for you, even as the hope itself breaks my heart.  Because, while I love him, he's never been mine and I've never forgotten that.  He is yours.

How do you learn in a few weeks what has taken me 9 months to learn?  Do you know that he cries when his diaper needs changed, and that that cry is distinctly different from his hungry cry?  How do I teach you that?

How will you know at night when it's time to get up with him and when it's okay to let him fuss for a moment?  Will you know to stay right with him in the bath, to read to him at night, to always use fleece jammies because he hates being cold?  Will you know how to snuggle him and how to give hugs and kisses and whisper that you love him?  Did they teach you those things?  I suppose some things a mother just knows, but I don't know what you know.

How can I teach you all of the things you need to know, because you're his mother?

I can't.  But I'll give it my best.




Thursday, December 18, 2014

Creating and using a Care Notebook for your child with medical needs

Shortly after Cade was born, a friend told me about Care Notebooks.  I'd never heard of them, but a program in Oregon gives them for free to any child with special needs, so I signed up to receive one for Cade. 

Two years later, our Care Notebook goes to every appointment.  So handy!!  For me, it's absolutely 100% worth the time and effort to assemble one. 

1.  What is a Care Notebook? 

Our Care Notebook functions as a personal health record and helps parents coordinate the complex records of their child's care, services and providers.  ~The Swindell Center

Being the parent of a child with special health care needs can feel overwhelming at times.  Your child may need care and services, on a regular basis, from many different types of providers.  This Complete Care Notebook was designed to help you keep track of and organize important information about your child's health and healthcare.  ~Family Voices of Rhode Island

2.  Where can you get a Care Notebook?

Oregon residents can get a fully assembled notebook for free from the Swindell Center.

Alternatively, anyone can easily create their own with a few tools and downloadable forms.  Here's how...

3.  Download forms to build your own Care Notebook

Complete Care Notebook - this one is from Family Voices in Rhode Island.  Fantastic Care Notebook, but at over 129 pages it'll make you wonder if it's all necessary.  It's not...over half is a resource guide that may be useful for you but is mostly relevant in Rhode Island.  I printed pages 1-47 and it was perfect. 

Care Notebook & Organizer - this is the one that I received from the Swindell Center and the one I still use.  It's well-laid out and comes in both English and Spanish.

Care Notebook - another good option, this one is from Washington State Dept of Health.  I use some of the pages from this one because I like the way they're laid out. 

4. Take a shopping trip for office supplies

You'll probably need to buy a few things.  Here's my list, add or subtract as you feel the need (links are for reference):
  • 1" binder - Any 1" binder will work, but consider getting a good quality one.  You'll use it a lot. 
  • Divider tabs - I like the ones with pockets, but buy whatever you like best.  When I build Care Notebooks, I usually just buy the 5-tab sets, but they do make 8-tab sets if you think you'll have that many categories.
  • Binder pockets - if your tabs don't have built-in pockets, you'll probably like having a few pockets
  • Business card pockets - Not only are these great for storing business cards from doctors but I've also discovered that these hold medication refill slips from the pharmacy very nicely. 
  • Some sort of Post-It note pad - great for writing down questions prior to an appointment or taking notes during an appointment.  I keep mine in the very front.
5.  Put it all together.

Put things in the binder in a way that makes sense to you.  If a page or section of the Care Notebook isn't relevant, pull it out and save it in a file somewhere.  Someday you might need it.  When Cade was hospitalized for the first time at 10 months, I was glad to still have the Hospitalizations page.  But you can also always print individual pages off of the website where you downloaded originally.

6.  Pull together all of your information to enter into the Notebook

This is where it gets more tedious.  Filling in all of the blanks takes a lot of time, but it's worth it.  Grab a cup of coffee and settle in.
  • Contact info for all doctors, specialists, and therapists.  If they've seen your child and produced a medical record, get their info. 
  • Medication information.  I've started saving the prescription tear-off tabs at the bottom of our prescription receipts from Walgreens.  They have all the info I need and they fit into a business card pocket. 
  • Appointment information.  I keep a record of all appointments, but if you have a TON of appointments, maybe just keep track of the specialists and well-visits.  Inevitably, someone will ask "When was the last time he saw...." and now you'll know. 
  • Lab tests - if you get a lot of lab results, consider putting them in the binder.  My son has an issue that requires almost monthly blood draws, and I refer back to the results so often that I finally made a tab just for them.  If you only have blood draws a couple of times a year, then this may be a step you can skip.
  • Hospitalizations, surgeries, procedures.  Dates, reasons, which doctor did what, etc.
  • Anything else that you would refer to often. 
  • For my Down syndrome mamas, I also recommend printing out a copy of the AAP health care guidelines for kids with Down syndrome.  The checklist is handy and easy to follow.  I usually print pages 4-6. 
7. Start filling it out and take your time.

It doesn't have to be done all at once.  If your child has a lot of procedures, lengthy hospital stays, etc, then it will probably be overwhelming to think about.  But you don't have to do it today, or even this month.  For now, just focus on getting doctor's contact info.  Then do another step.  Whatever you can handle is better than having nothing! 

Don't be afraid to move around sections of the Care Notebook.  Make it usable for YOU.  A lot of pages of the downloaded Care Notebook forms won't be useful to you.  Some will never be useful, don't worry about it!  These notebooks are general for use with all disabilities, so there will be pages for things like cerebral palsy that you'll most likely never need.

Now that I've given you the nuts & bolts, here are some photos of my Care Notebook and what I personally have in it.  Mine has evolved over 20 months of use and is still changing.  It's a work in progress! 


Some recent additions to my Care Notebook


My tabs:
  • Medical - contact info for doctors, medical record numbers, diagnoses
  • Personal - all about Cade...family history, In Case of Emergency, etc
  • Appointments - I note the date of each apt, weight & height, Doctor, reason for visit, and any follow-up the doctor requests or notes about the visit
  • Lab Results - Cade needs almost monthly blood draws so I finally gave the labs their own tab
  • Medications - any prescription meds or supplements, the dose, and who prescribed.  This is super handy for new doctors because they can just photocopy the page.  


AAP Guidelines for Health Care - our pediatrician and I go through the list together at every well-visit.  She has it on her computer, but loves that I have it so handy in the binder.



I take my Care Notebook to every major appointment now.  Well-visits and anything with a specialist.  Today it came in super handy.  We had a new specialist we were supposed to see in February.  Instead, they called this morning and wanted to know if we wanted to come right now and fill a cancellation.  When I arrived, they handed me a 4-page New Patient form.  It wanted the name and phone number of Cade's pediatrician, his heights and weights for as many months as we could fill in since birth, and several other things.  Those aren't things I memorize, but I had my Care Notebook and was easily able to fill everything out on the form.  I had this blog post in mind, so I snapped this pic as I sat in the waiting room:


Monday, December 8, 2014

Pizzazz! Sparkle!! A sensory space

Every child benefits from a sensory environment.  Touch, smell, listen, see, and taste.  The more we use our senses, the more our brains develop.  For kids with Down syndrome, this is extra beneficial.  The more experiences I can give Cade, the better his brain will grow.  Last year I had "Caesar's Palace."  This year I created a sensory play corner.

My original idea came from, where else, Pinterest.  I took her ideas and went from there.  With my husband pushing the babies in a cart, I perused our local home improvement store for inspiration.  And walked out with about $30 in random "stuff", along with a large section of beadboard that we had cut in the lumber yard.  I went home and looked critically at the only spare corner in our small house.

Our play corner before I overhauled it.  It was mostly a storage area for our climbing blocks.

In the garage, I laid out my initial supplies.  The beadboard came as a larger piece so I had the lumber yard cut it into 4 pieces for me.  They're about 18" x 30".  A lot of my sensory items were free samples.  I bought an odd assortment of things, too.  Anything he could DO that would capture his attention.


I arranged them on the board and tried to imagine him...sitting, standing, even laying.  What would he feel?  What would he see?

The tape was on the pipe just long enough for the glue to dry.  I always kept safety in mind as I imagined the boards.

Then I glued it all down with Gorilla Glue.  It was reported to be the strongest glue and some of these things I definitely didn't want coming loose.  The chain fits down inside the pipe and is long enough to come out the other end.  The light takes batteries and clicks on and off.  The black square and brown rectangle are for texture...the brown is pretty rough and the black is very smooth.

With some Command picture hanging strips (the velcro-like strips) I hung the mirrors and the first board, along with some trinkety items I thought Cade would like.  I covered the floor with some foam puzzle mats that we had but never used.  Then I took a few of our foam climbing blocks and closed in the room.  And let Cade loose.  Immediately he crawled through the tunnel into his new little corner.





A little free advertising for the Down Syndrome Diagnosis Network

I was gleeful as he explored his new space and instantly started playing with the sensory board.  And so I started looking for more items to fill a second board.  We had space on the wall for two boards, so I wanted to build the second board as soon as possible.  Meanwhile, it turned out that all of our boys liked the new space...




When our OT first visited, she bee-lined for the corner and hopped over the tunnel to check it out.  She raved over what a great space it was, which made me feel good for trying this crazy idea.

I finally finished the second board and our play space is officially complete.


 

It's a bright, cheerful little spot, no more than 30 square feet.  But it's a stimulating environment to awaken the senses, at least until you play so hard that you fall asleep! 


I still have 2 sections of beadboard, so my next plan is to make 2 "extra" boards, then change them out regularly with the ones currently on the wall.  I really want to incorporate smell and maybe even taste into the new boards.  I have some ideas, so we'll see if they pan out!  Since I use Command strips that are like velcro, as long as all the strips are in the same location on each board, I can do this without any damage to the wall.  I also regularly change out the toys and books inside the corner.  Some days it has rubber blocks, other days musical instruments.  I don't put a lot of thought into it, I just swap them out when I'm picking up clutter.

Thursday, December 4, 2014

Healing

Let me preface this post: I have no issues whatsoever with Cade's Down syndrome now.  I embrace him for who he is and I love every single chromosome.  But once upon a time...

When I found out Cade would have Down syndrome, I was alternately relieved and absolutely crushed.  Relieved because I knew he would survive.  I had worried that he might have T13 or T18, both generally fatal at birth, so T21 was a huge relief.  But I was also crushed because very few people actually hope their baby will be born with a disability.  I grieved for us and for him.  Life would be harder, and I didn't know if we were ready for that. 

Before I bury the headline, here's the crux of my blog post...yesterday was our two-year anniversary of receiving the diagnosis. 

I didn't think of it once all day.

Not even once.  It completely slipped my mind until this morning.  And today, I realized that time and experience are healing.  Two years ago today I was crushed, obliterated, wiped out.  I spent a lot of the day crying.  And I didn't spend much of the night sleeping.  It seems silly now, in hindsight, but that was a dark time for me.  Sometimes during the darkest part of the night, I wondered if miscarriage would be easier. 

After a few days, my heart and mind calmed down and I composed a long letter to my family.  It started like this:




It really didn't take too long and I was in a much better frame of mind.  But the heartsick feelings of that day have stuck around some.  Last year at this time I was too overwhelmed with leftover emotion to write any blog posts.  In fact, it set off 6 months of writer's block!  

And this year, I forgot all about it!  What a refreshing feeling.  



Monday, December 1, 2014

What you see isn't true

If you live in our area and you've seen us in the past year or two, then you've likely met Cade.  He's the baby you smile at in a restaurant.  He's the one you make googly eyes at in the grocery store.  He's the one who you talk to in a high sing-songy voice as you tell me he's adorable.  But most likely, the response you've gotten from him is this...


Blank.  Rarely does Cade show a response to anything in public.  He seems vacant.  This is his personality in crowds, in front of new people, anytime he's overwhelmed or tired.  He retreats into himself and...blank.  

I used to make a lot of excuses.  

"He's so tired right now."
"He just woke up from a nap."
"His coffee hasn't kicked in yet."

I used to try to encourage him to wake up.  Can you wave?  Will you say Hi?  

Most of the time now, though, I just say "Yep, he keeps us busy.  Typical toddler."  And I move on.  But really, what I really want you to see is this:

Just readin' the mail



20 months old
Thanksgiving Day


When you see people with special needs and they seem to be "blank" or "not all there", remember this blog post and realize...what you see isn't a true perspective.  I guarantee, there is a person inside and there are smiles and laughter and a life worth living.



“This is not some big distraction. This is not some huge detour. This is the path God has for us and it leads somewhere good. It could even be our defining moment.”
                                                                                                                             -B.Harris

 

Saturday, November 29, 2014

He calls me Mama

Eight months ago, we took in the skinniest (and if I dare, ugliest) baby I've ever seen.  He didn't cry...ever...and slept 21 hours a day.  Since then, he's filled out, has adorable chubby cheeks, and a sparkle in his eye.

I've sat up with him at night when he's sick.  Dried his tears when he hurts.  Cuddled him as he eats.  I've looked into his eyes and told him, over and over, that I love him.  He needs to hear it, even if he's only a baby. 

I've stopped going to the free closet for clothing "in case he goes home soon".  Instead, I buy his clothes right along with the other kids' at the same stores.

I celebrate his milestones with phone calls to Grandma (my mom).  I note them in his baby book.  Probably more than his fair share of photos are on my phone.

And he calls me Mama.

People ask if we'll keep him.  Unfortunately, it doesn't really work that way.  He's not mine to keep.

Of course I love him.  How could you care for a baby for 8 months and not fall in love?  Of course I'd love to have him here forever.  But that's not my decision.  I live, I love, I reserve a ever-smaller part of my heart for the day when he'll go home. 

But for now, for the next few months, two babies call me mama.  And I love it.

Our Cade and his "twin", Baby L




Monday, November 24, 2014

Toss the lists

You've seen the new trend, I know you have.  Lists.  Lists of everything.  25 things to eat before you die.  15 things to buy a grandma.  5 funniest quotes of all time.  And so forth.  Sometimes these are hilarious, sometimes annoying.  Sometimes a little troubling.

When I first started seeing the special needs lists, I was like "Yeah!  You tell 'em!"


But then...it got overwhelming.  I was seeing new lists almost daily.  My friends sent them to me, family tagged me.  And I started to think, what if my friends and family are reading all of these and trying desperately to remember them?  What if they're tiptoeing on eggshells trying not to break a rule or hurt my feelings?

I think the lists are good, in general.  If it makes a few people more aware, or changes a couple of minds about our kids, then that's a great thing.  But all of my friends and family are well-meaning people who support us.  What do they think of all of these lists?  What would I think if I were in their shoes?

Oh poo.  That's what I'd think.  I'd think people shouldn't be so sensitive.  I'd think that as long as I treated their kid the same as all the other kids, then saying a phrase the wrong way shouldn't be a big deal.

And so, I'm letting you off the hook, officially.  I don't care if you call Cade a Down syndrome baby or if you tell me that "they're always so sweet."  All my kids are sweet.  And frankly, sometimes Down syndrome baby is a lot faster to say than the correct baby with Down syndrome.  As long as you're not an insensitive jerk, then I'm cool. 

I just have one request.  Can you remember one thing?

Love him.  

That's it.  Just love him.  Love our kid.  Love us.  Love us by loving our son. 


No babies were harmed in the making of this video.  ;)