Surprises and Challenges

October is Down Syndrome Awareness month and I have asked my friends to ask any questions they may have about Down syndrome and I am attempting to answer them all.  I have been asked what surprised me the most and the biggest challenge is raising a child with Down syndrome.

The biggest surprise is the number of appointments that are involved in raising this little fellow.  He currently has 11 appointments a month for therapy (speech, occupational, physical, developmental and the coordinator).  They are all helpful and needed.  This does not include medical appointments.  I recently filled out an application for Asher's preschool.  I needed to list his physicians.  There were 5 blanks.  He has 6 physicians.  He is relatively healthy, he has a few minor medical problems, but somehow has 6 physicians.  All this is surprising and challenging.  It makes me very thankful that I am able to work part-time because I am not sure how I could manage all this and work full-time.

The other thing that surprises me is how people with Down syndrome are so often underestimated.  I did this myself prior to meeting Asher.  People with Down syndrome have achieved great things.  

Hands down, the biggest challenge is seeing a friend lose a child with Down syndrome.  The community is small and close.  You are instantly bonded with someone when you have Down syndrome in common.  When a family in your community loses their child, it is heart wrenching.  I cannot imagine how hard it is for them.  This has happened in my local community twice in the past 6 months.  There is nothing I can say that can make things better.  I can only pray for them when I think of them, which is often.

In loving memory of Baby L and Baby J.

The Unspoken Oh

     It happened.  The unspoken "oh."  The reason why I have been so open about Asher having Down syndrome even before he was born was so that everyone would "know" in hopes to lessen some of the awkward moments.  I also try to share what I have learned about Down syndrome to hopefully educate others through social media.
     Recently I ran into someone who I am not friends with on Facebook and whom I have not seen in a while.  I was pushing Asher in his stroller and he looked at it inquisitively.  I said, "did you know we had another baby?"  "No," was his response.  If he didn't know that we had a baby, then he didn't know we had a son and that our son had Down syndrome.  So I turned the stroller around and introduced him to my sweet Asher.  Then there was the unspoken "oh."
     The "oh" can mean many things and I can't always interpret it.  It can mean, "oh, he is so sweet".  Usually that "oh" is accompanied with oohs and ahhs and lots of baby talk.  This is my favorite kind of "oh," because, after all, he is adorable.  Sometimes the "oh" can mean pity, like "oh, I am sorry."  Most of the time it probably means "oh, I don't know what to say."  I am not sure which "oh" this was and I thought about saying something about him having Down syndrome, but thought that I shouldn't have to "explain" my son.  I instead said nothing at all.  If I could do it over again, I would say something like this:
      We found out that Asher had Down syndrome before he was born.  Initially we were shocked and upset.  Now that he is here we are really doing ok.  We are actually doing better than ok.  He is a true blessing and brings joy to our lives.   Sure, there are times where I wish things weren't so hard for him.  For example, he has to work for every milestone (like sitting and rolling over) while typical children do these things with ease.
     I probably would have stopped there, but I could go on.  Asher has shown me that sometimes difficulties can become blessings.  I've always known this, theoretically, and James chapter 1 tells us this, but it is one of those things that is easy to say, but difficult to live.
     When Asher was a few months old, he was diagnosed with hypothyroidism and was prescribed medication.  Not a big deal.  Except that he had to take the medicine by spoon.  Remarkably, we managed to get him to take it from the spoon.  He has also had some problems swallowing because of his low muscle tone.  Early on he had to have his milk thickened and he saw a speech therapist who specializes in feeding because of his difficulties.  We had to hold him a certain way, give him a specific type of bottle, and thicken the milk, and most of this was learned by trial and error with her guidance.  She led us through all of this, and eventually he outgrew the swallowing problems and we were able to stop thickening his milk.  We continued to see the speech therapist and she was there guiding me as I gave him his first bite of food, on a spoon, that he already knew how to use because he had been taking medication daily for a while.  She also instructed me along the way on advancing his diet, showing me things to do to help him chew his food properly, etc.  Who knew eating could be so difficult?  Now, he is actually eating pretty well.  Because he had the problems early on, we had the speech therapist early on and because he has a thyroid problem, he used a spoon way earlier than he needed to for eating.  Both of these things have helped us avoid bigger problems like food aversions, gagging, and even refusal to eat that are commonly seen in children with Down syndrome.
So what is next on the agenda?  Eating his first piece of birthday cake!

"Give thanks in all circumstances..." 1 Thesalonians 5:18

Three stockings

This holiday season, there is a lot we are thankful for.  Mostly the outpouring of love shown to us because of the birth of our son.
I am thankful for:
My husband, who is such a loving, patient father to our children.
Addison, who has again shown what a great big sister she is.  She is sweet, sensitive and kind.
Anna Kate, who has risen to the occasion of being a big sister.  She has endured countless doctor's appointments and therapy sessions, where her brother got all the attention, with patience, maturity and grace.
My parents who have gone above and beyond in helping us care for our children.  They have kept the girls when we had to take Asher our of town for a doctors visit, keep my kids while I work, met me to do "drive by" drop offs when I am running late coming from work to make appointments, dropped everything to pick up Addison from school so that I could take Asher to a medical test they worked him in for because it needed to be rescheduled, and many more things that would take to long to write.
In laws who always send special packages for my children, watch our children when they visit, and give special attention to each of our kids.
Therapist who love my son, and get excited when he masters milestones.
Countless prayers on our behalf and words of encouragement from family and friends.
Friends who have watched my children while we go to medical appointments, even picking Anna Kate up in a wagon so that I would not have to pack the kids in the car!
Multiple delicious meals that were brought to our house.
Boxes and boxes of hand me downs for our sweet baby to wear.
A high chair given to us with love.
Hand me downs with Asher on them!
Most of all, I am thankful that I have three stockings to hang by the fireplace.

But as we all know, it is not about the stocking, but about what is inside the stocking.

Merry Christmas!

Half birthday

Yesterday, Asher had his half birthday.  He is six months old.  It was also exactly one year from when we found out we were having a son and that he had Down syndrome.  We thought the news was devastating at the time, but have since realized it was life changing, but not devastating.  To celebrate, I am posting an essay I wrote and submitted for publication in a book about how children with Down syndrome enrich parents' lives.  Hoping it will be selected!

A Doctor’s Blessing

It’s hard being a doctor and a patient.  It’s hard being a doctor and choosing a doctor---especially an obstetrician.  You can go to one of your partners, but you have to be comfortable with everyone knowing your business.  You can go to someone you do not know, but then you risk the unknown.  And it seemed like in each of the large groups in town there was at least one doctor that I either knew too well and didn’t feel comfortable with them delivering my baby (but would recommend him or her to a friend) or had heard something about someone in the group that made me feel distrustful.  The best case scenario is what I found when I was pregnant with my third child--your partner leaves your practice and starts her own practice.  Not only did she leave, but two of my favorite nurses left and went with her, making it seem like family when I went to my appointments.  She was more than my former partner, she was my friend.  We had met each other in that miserable first year of medical school.  

When it came time to offer me prenatal testing for chromosomal abnormalities, she said something like, “you do not want it do you?”  Because she knew me and she knew it “wouldn’t change anything” as many of my similar minded friends say.  But it would change something.  It would allow me to be prepared.  I am a planner, after all.  Noninvasive prenatal testing was not available when I was pregnant with my two daughters.  Not only did I want to know about the results of the test, but I wanted to know if I would be having a boy and therefore have to redecorate the nursery!  

Then the wait.  I was hoping the results of the test would come back the next week because I, the ultimate deal finder, had my eye on the cutest bedding set at a store that was going out of business the next Saturday.  It would look so cute in a little boy’s room!  The results took longer than I thought, however.  She texted me 10 days after my blood draw and asked if I was working.  That was a little odd.  I was expecting her nurse to call and tell me everything was alright and to reveal the gender.  So I texted back that I was indeed at work, but not busy and needed to know if I was having a boy or girl.  No response.  That was unusual, but I am sure she had just gotten busy.  She was at work, after all.  So I called her after I left and left a message telling her yes I had indeed left work, she could call me at any time.  Then I received the phone call that would change everything.  

Yes, indeed I was having my boy, and he had a 99% chance of having Down syndrome.  She was prepared for the questions she probably knew I was going to ask.  This test boasts a less than 0.01% false positive rate.  She let me hand pick my perinatologist and got me an appointment for Monday.  It was Thursday, the day after my husband’s birthday.  She also told me that when the nurse showed her the result that morning, she cried, but she felt comforted imagining my husband, my two girls and me with our new little boy.  She told me this was the hardest thing she had ever had to do during her medical career.  She reminded me that of the three chromosomal abnormalities the test checked for, trisomy 21 was the one you wanted.  It had the best outcome, the best long-term survival and less associated medical complications.  Down syndrome is the most common chromosomal abnormality among live born infants occurring in 1 in 700 babies in the US.   Ultimately, he has a common, well known, well studied syndrome that many doctors have expertise and he will be well taken care of.

All my life and the questions that I had as to why things were the way they were made sense in that instance.  Why had I remained in my hometown instead of moving away like my sisters?  I was the traveler, not them.  I understood why I stayed at my current job giving me more flexibility with my schedule, when the organization basically split and the majority of my close colleagues left to work for another health center. 

I spent the next few days mostly in tears, in prayer and with very little sleep.  I was mostly mourning the loss of the son I had imagined.  I was fearful of the unknown.  What life would be like?  This wasn’t supposed to be happening to me.  I am a doctor.  I am supposed to be the one delivering bad news, not receiving it.  I reached out to the Down Syndrome Association in my area and was put on the phone with the executive director who had an adult daughter with Down syndrome.  She was very reassuring and kind.  I also spoke to a friend from high school, who I hadn’t spoken to since graduation, about her toddler with Down syndrome.  She made me realize my life was not over, it was just beginning---that I should not underestimate my son, that he would enrich my life.  And she was correct.  

The weekend dragged on.  I went to the perinatologist preparing myself to hear bad news.  I had decided against invasive testing and did not really want to hear about it or about termination.  I knew it was his job to inform me about these, so I went in saying that I did not want invasive testing and that I was moving forward with the pregnancy.  He was very kind, I knew him, and he treated my husband and me as friends.  I could tell he was worried. I wanted answers and he was very cautious.

Prepare, I did.  I scoured the internet, read 6 or 7 books, some medical some not.    The pregnancy was a roller coaster.  Once I got over the initial shock, I for the most part was doing okay, but then I would not be.  Every time I went in for a high risk appointment, I had come up with a new medical problem that I was sure he had, and was relieved to find out he did not have it.  My faith was really what sustained me.  

Initially, we told our immediate family and a handful of close friends.  Within a couple of days, we wrote a letter we sent to other family members and friends.  We eventually shared the letter in a blog and shared the link on Facebook.  I wanted everyone to know, so there wouldn’t be questions when people met him after he was born.  It still was an awkward subject.  I would run into someone I knew, nothing would be said about it, and I wasn’t sure if he or she had seen my post or not.  Most of the time, they had, they just didn’t know what to say.  My 90 year old grandma was the first person I told who did not react like it was bad news and did not say she was sorry.  She assured me that he would be a blessing. 

I knew I had finally come full circle when at the end of my pregnancy I was awake one night worrying about the fact that I did not yet have a wreath for his hospital door.  I had finally gotten to the point of almost enjoying my pregnancy and worrying about typical pregnancy things.  

The last few weeks of my pregnancy, I saw my doctor twice a week for testing.  One Tuesday, I went in to my appointment.  I had the rest of the afternoon free because my girls were in preschool that day because I had taken off work to go to the appointment.  I was planning on getting a manicure and pedicure after I left the appointment.  I never made it to the nail salon.  The baby decided to not cooperate with the testing and I was sent in for induction.  The nurses asked if I had a birth plan.  I did, I just wanted to hold my son.  I was afraid he would be whisked off to the NICU and that I would not be allowed to hold him.  The next day, exactly 6 months after hearing his diagnosis, I was holding my son.  The birth was joyful.  I had done all the grieving and was prepared as much as I possibly could be, so that all that was left was joy and happiness to finally meet him.  He did remarkably well.  He has only a few minor medical problems. 

We are so grateful for our Asher.  Asher means “happy, blessed.”  We are happy and blessed to have him in our family.  He has taught me how to love fiercely and how to celebrate small victories.

To the moms of the children with special needs in my daughter's class

     As my daughter started kindergarten this year and my work schedule was graciously reduced per my request after having my son, I decided to become co-room mom.  (I do not recommend this, it is WAY more work than you would think!).  There are two boys with special needs who are in the class and do some work outside the class with the special education department.  Research has shown that the more a child with special needs stays in the classroom with his or her peers, the better.  Several of the parents I have met through the Down Syndrome Association talk about how they sometimes have to advocate to get their children into the classroom with their peers.  

     The other room mom and I are doing monthly crafts and we recently did our first one--an apple sun catcher.  I volunteered along with 4 other parents.  It was very difficult for the 5 of us to maintain control of the classroom.  The kids were everywhere, I am not sure how one teacher manages that many five year olds.  As the craft got started, the teacher called down to the special education department and had the two boys come down.  Two assistants came with them and helped them with their projects.  I may not ever get the chance to meet their moms, but if I did, this is what I would say:

Moms, 

I want you to know, I did not overlook your sons.  I was extra kind to them, I called them by name.  I made sure they had their supplies.  I took several pictures of them for the class photo album.  I noticed their empty seats during the curriculum night for the parents.  Maybe you were in the special education department trying to figure things out and going over things?  Maybe you do not consider them a part of the class?  I want you to know moms, I do.  I am pulling for your boys.  I am trying to teach my daughter to be extra kind to them.  I am hoping that she will talk to them, even though she has decided that she does not talk to boys, I am hoping that she will make an exception.  I told her she should talk to them because they may not have as many friends as her because they are not in the class all the time.  I know that I will be in your shoes, moms, in 5 years.  I am hoping someone else's child will be kind to my son.  I am hoping that he will be invited to birthday parties and have someone to sit with at lunch.  I am sorry that I never would have thought much about this until I received my son's diagnosis.  Thank you for leading the way for my son.  

Sincerely,
Your room mom

What makes you different makes you special

As my oldest daughter is starting kindergarten, I've been trying to prepare her for that inevitable day when someone makes fun of her.  I am also aware that some day someone will say something mean to her about her brother.  I came across a post someone made using the phrase "what makes you different makes you special" and I really liked it.  So, I explained to her that since she had straight hair and her sister had curly hair, they were different from each other, but that their hair made them special.  I asked her what was different about her brother.  Her response was that his hair was short like his dad's.  Even now, she still just sees him as her baby brother.

He also has proved us wrong.  The last time his physical therapist saw him she warned me that it would be a while before he began rolling over.  I agreed with her, saying "I know he is no where near rolling over."  The very next day, he got so mad about being on his stomach (which is one of his exercises) that he rolled himself over to his back!!!!  I keep trying unsuccessfully to capture it on video.  He is still not doing it regularly, but he has done it a few times.  He is also cooing quite a bit (usually when I am somewhere that he needs to be quiet), smiling and laughing.

Two months in

     Asher is now two months old and is such a blessing.  He is definitely my easiest baby.  I guess he has to be with two older sisters.  He does have an atrial septal defect, which is a small hole in between the upper two chambers of his chart.  He had an echocardiogram done the day after he was born and was thought to have 3 holes in his heart, so to only have one when we went back for his follow up is an improvement.  I was assured it should not be causing any problems now, and may close. If it does not close on its own, it can most likely be repaired via a cardiac catheterization when he is a toddler.  We are so happy that he should not have to have open heart surgery.  He does have a few minor issues such as low tone in his neck muscles and problems feeding, which we are working on.  Despite having relatively few medical problems, he has had TWENTY appointments since he was born.  I cannot imagine how many he would have if he had a serious medical condition!!!

    Last week, his physical therapist, whom I love, came over for a session.  She had seen him about a month ago and instructed me to do some exercises to improve his neck muscles.  Well, the strength in his neck has improved, and she agreed.  I thought, "mission accomplished," but oh no.  She thought he was "preferring" his right side, so I needed to make sure his head is turned to the left when he lays down. She also wants his arms and legs to come more to his midline, so I have to prop up his arms and legs with a pillow and rolled blankets or socks.  Basically she does not want him to lay all sprawled out.   She showed me a few additional exercises to do with him.  I am also supposed to keep doing the initial exercises I have been doing for the past month.  No big deal.  After that, he had a swallowing study scheduled.  Having two appointments in one day was a terrible idea.  The speech therapist who was seeing him for feeding wanted to check to make sure he wasn't aspirating when he ate.  She thought the test would probably be normal, but wanted to do it as a precaution.  Well, the test showed that he aspirates thin liquids, it was inclusive when he uses a preemie bottle and he does fine with thickened liquids.  She gave me the choice to either use the preemie bottle and also nurse him and see how he does or to use thickened milk.  That sounds easy.  The problem is that he is noisy and is noisier when he eats.  So now I am supposed to decide by which method he is less noisy.  That sounds easy, but is really hard to do!  Plus, it takes him twice as long to eat using these methods, which I guess is the point, right?  When I got home, I read the physical therapy progress note and noticed she wrote "as much as possible."  To me, as much as possible means every waking moment except when he is eating or sleeping.   Needless to say, I felt a little overwhelmed.  

    The next morning, as I was walking in the gym, holding him, and SLOWLY feeding him with the preemie bottle, I was trying to reflect on some positive things.  I thought, well at least I have bought all of my kindergartener's school supplies and uniforms!  Teachers, if you have a specific item on your list, I suggest you write in parentheses where it can be found.  Her list request two writing tablets with 5/8 inch lines with 8 lines on each page.  Surely Walmart, Target, Staples, Office Depot or Kmart carry these, right?  No, no they don't.  I finally gave up and bought her some with 7/8 inch lines.  But then I imagined her teacher recognizing my child's work by her big lined paper and rolling her eyes up in her head and I decided to keep searching.  I finally found them at a teacher supply store!

     It seems like every time I start feeling sorry for myself, the Lord reminds me of my blessings.  A few days ago we went to the Super Hero send off party at the library to celebrate the end of the summer reading program, because of course we couldn't miss that.  I was standing in line waiting for them to get their prizes and I noticed this little girl who seemed to be choking.  I was trying to dust the cobwebs off the part of my brain that remembered the PALS (pediatric acute life support) algorithms and was preparing to do chest compressions while singing to myself "Staying Alive" to make sure I performed the compressions at the correct rate (this is true, look it up).  I yelled at her mom to ask if she was okay.  Her mom said, "yes, she just has an airway condition."  I felt very glad that my child was not having a near death experience in the library, and felt a little less overwhelmed by what he has going on.  

    We love him dearly, as do his sisters, almost too dearly.  My three year old asked when he was a few days old, "why don't my fingers fit in his nose?"  Good question.  

    Here is a picture of two of my super heroes.  Does Teenage Mutant Ninja Turtles really count as a super hero?  I am not sure, but I had to work with what I had.  My baby superhero was dressed as superman and is missing from the picture because even superheroes need to sleep some times.