My Journey with Jenna

A Father's Experience with a Child with Down Syndrome

Continued development

1149017_1404561789769292_1392164520_nJenna continues to surprise me when it comes to her development.  I keep anticipating that she is going to really struggle with something, but she continues to get good reports from the gals working with her as part of the Early Steps program.  Jenna gets a visit once every two weeks at our house from a very nice woman who specializes in early development who watches her movements and suggests exercises that we can do with her to try to further develop her muscle strength.  She also suggests ways in which we can assist Jenna to meet milestone such as reaching for toys, pushing herself up, etc.  Jenna also visits a place in Gainesville called Kids on the Move where she gets a little additional help from a great physical therapist.  Jenna continues to develop her vocabulary (and volume) and continues to do well with eating solid foods.  She continues to try to outsmart me (and often does) when I try to feed her and she isn’t interested in it.  She has established a very particular after dinner routine where she insists that someone pick her up and carry her around the house (or preferably in the back yard).  If we do not comply she fusses and if we try to put her to bed before she is good and ready she will just lay in her crib and scream.  So she has already developed a bit of a stubbornness – which may benefit her in the long run because she may work harder to prove she can do what other people can.  Jenna continues to be a blessing and I love her precious little smile.

Solid foods

We’ve experienced some exciting developments recently with Jenna.  She is officially a “solid” food eater.  We’ve had a surprisingly easy time getting to her to eat cereal and baby food.  We anticipated that we’d have trouble because she has a tendency to push her tongue out of her mouth a lot, but she has done a great job of keeping the food in her mouth long enough to swallow it.  Check out the video below of her first experience with cereal.

Jenna has had several appointments with an early development specialist  and the appointments are going really well.  We’ve learned some great things about ways to hold Jenna to force her to use the correct muscles to keep her head steady and to keep her arms forward instead of slumping backwards.  We’ve learned some tricks to get her some exercise while she is playing on her activity mat to strengthen her upper body.  The specialist has been very pleased with Jenna’s progress.

Children with Down syndrome are sometimes graded on height and weight on an alternative growth chart because they are typically small.  Jenna, however, has not slipped off of the regular growth chart and appears to be taking after me for height.

I realized that since things had been going so great that I had neglected this blog for a while.  I regret not making more of an effort to write about the gains that Jenna has experienced.  My journey with Jenna is bound to be filled with a mixture of joyous events and rough patches.  I need to be mindful of the journey in its entirety and write blog posts about both the good and the not-so-good.  I appreciate your patience as I continue to try to get in the habit of blogging about my experiences.

Is that “normal”?

Now that Jenna is a bit older (3.5 months to be exact), we find ourselves asking “is that normal for a child this age with down syndrome?” Or “Is she supposed to be doing that already?” or “isn’t she a bit young for this?”  We’ve observed her doing things lately that the books say typically happen a little later on and we can’t help wonder at what point we are going to observe developmental delays.

Jenna is already really close to rolling over from belly to back.  In fact, just last night I placed her on her belly and watched her roll to her back three times while laying on a soft bed.  I know it isn’t the same as being on a hard floor where she wouldn’t have the advantage of sheets and blankets to push off of, but it still seems to be a great sign.

Jenna’s neck is really starting to stabilize when you sit her upright or pull her up gently by her arms.  And it has made us ask “is that normal for this age?”

Jenna is also already vocalizing sounds like goo, ahh, boo and others.  She really seems intent on joining our conversations.  And she is really close to laughing.  If you tickle her chest she makes a happy sound which kind of sounds like Ernie’s laugh on Sesame Street.

We understand that there is a wide range for development in children with Down syndrome.  The books we have indicate that we shouldn’t be surprised if something takes up to twice as long for Jenna to master as it did our son, Grant, who does not have Down syndrome.  For now, we are just blessed that Jenna is doing as well as she is.  And we know that when the day comes that she struggles with something, we’ll do our very best to help her with patience and love.

I am doing well

If people ask me how I am doing, my typical response is “I am doing well”.  Prior to the birth of our daughter Jenna that response was typically accepted without question.  After her birth, there is sometimes a follow-up question:  “How are you, really?”  The follow-up question really means, “how are you dealing with Jenna’s diagnosis?” and the answer to that question TODAY is, “I am doing well”.  But it was not always the case.

If you would have asked me how I was doing in the moments immediately following the Pediatrician saying, “there are strong signs that your daughter has Down syndrome”, I would not have said I was doing well.  I probably would not have said anything at all.  For several minutes after hearing the diagnosis, I just sat in stunned silence.  I am not sure I heard a lot of the discussion between the Dr. and my wife that followed his initial statement.  The words “Down syndrome” just kept reverberating in my head.  At some point, I was able to close my gaping mouth and re-focus on what was happening in the room.

If you would have asked me how I was doing several hours after learning of the diagnosis, I would not have said I was doing well.  You likely would not have been able to understand the words coming out of my mouth.  I called my parent to tell them the diagnosis and my emotional state was far different than it had been several hours before when I called them to let them know their grand-daughter had arrived.   I could barely mutter the words and sobbed nearly uncontrollably in the car as I was driving home for a late dinner.  I had to ask them to tell my brother because I didn’t think I could emotionally handle telling anyone else at that point.

If you would have asked me how I was doing later that first night as I laid in bed, I would not have said I was doing well.  You’d likely have overheard me talking to God all night long. You’d have heard me, amidst a flood of tears, alternatively questioning Him and asking Him for help.   After struggling so long to get pregnant a second time, why would you let this happen?   Please help me be the dad that this child needs?  What did we do to deserve this?  Please help us to find the best possible medical care for her so she can grow up strong. 

If you would have asked how I was doing the morning after Jenna’s birth as I was driving back to the hospital, I would not have said I was doing well.  You would have, again, had difficulty understanding me as I cried the entire way to the hospital as I began thinking about her future and how different it might be than I’d expected.  I realized that Jenna might not do things like attend college, get married, etc.

If you would have asked me how I was doing several days after Jenna was born, I would not have said I was doing well.  But I would have said, “better”.  In the days after the diagnosis, I began to come to terms with the unknown future we had in front of us and started the process of educating myself on the condition.  I began to get past automatically seeing the signs of Down syndrome when I looked at Jenna and instead started seeing my beautiful baby girl.

If you would have asked me how I was doing a couple of weeks after Jenna was born, I would not have said I was doing well.  But I would have said, “ok”.  The weeks following Jenna’s birth were stressful in that we had several very important appointments with specialists.  With the passing of each appointment, the fear of the future became less as we found out some very important things; Jenna was not born with a major cardiac problem that can be found in Down syndrome babies and her kidney function appeared normal.

If you ask me now, several months after her birth, how I am doing, I will tell you I am doing well.  It may not always be the case, there may be periods of time where I cannot honestly say that I am doing well.  I know that we may face some challenges and scary times in the future, but I know that friends and family will be there to support and pray for us.  And I know that God will give us the strength we need to face whatever may come.

When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.

The R word

Spread-the-Word-White-bkgrndMy daughter is less than two months old at this point and it is too early to really know what type of difficulties she will experience due to Down syndrome.  One of the things that we have to prepare for is some form of cognitive disability.  As I was looking at various websites related to Down syndrome, I stumbled across a campaign that the Special Olympics has organized and it really made me think.   The campaign is called “Spread the Word to End the Word” and is an ongoing effort to “raise the consciousness of society about the dehumanizing and hurtful effects of the word ‘retard(ed)’ and encourage people to pledge to stop using the R-word”.   They have established a great website at where you can pledge to stop using the word in a derogatory manner.

I never use  the R word to describe a person with a mental handicap, but I realized after taking a look at the website that I, too, was guilty of using the word as a substitute for “stupid”.  I had often used it to describe something someone had said or done, “that’s retarded”.  Or as a ridicule to one of my friends.  But even that usage of the word can show an overall disrespect to people who have intellectual disabilities.  I am more sensitive to that now and I have taken the pledge.  There is a great video made by a mother of a child named Max who has cerebral palsy.  In her blog entry which contains the video, she says, “Ultimately, this isn’t just about a word—it’s about respect. It’s about getting people to consider kids and adults with cognitive impairment equal members of society. It’s not about censorship, either; it’s about starting a conversation on how people can better treat Max and others like him.”

Will you consider taking the pledge to stop using the R word in everyday speech?

Lots of Socks

World Down Syndrome Day (WDSD) is observed on March 21. On this day, people with Down syndrome and those who live and work with them throughout the world organize and participate in activities and events to raise public awareness and create a single global voice for advocating for the rights, inclusion and well being of people with Down syndrome.

The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.  On December 19, 2011, the United Nations General Assembly declared March 21st as World Down Syndrome Day. The General Assembly decided to designate March 21st as World Down Syndrome Day and “invites all Member States, relevant organizations of the United Nations system and other international organizations, as well as civil society, including non-governmental organizations and the private sector, to observe World Down Syndrome Day in an appropriate manner, in order to raise public awareness of Down syndrome”.

Down Syndrome International, a UK based international charity invites everyone across the world to wear socks on March 21, 2013 to raise awareness on World Down Syndrome Day (WDSD).  “BUT NOT JUST ANY SOCKS…brightly coloured socks, mismatched socks, long socks, printed socks, 1 sock…maybe even 3 socks (or EXTRA socks) for 3 chromosomes”.  My brother and will be participating in this year’s Lots of Socks. I have purchased two pairs of brightly colored socks.  I will send one of sock from each pair to my brother and I will keep the other mismatching pair.  On March 21, he and I will don our mismatching colorful socks and proudly wear them all day long.

If you feel like joining us, that would be great!

The Journey Begins

The birth of a child is the beginning of a journey into the unknown.  Every parent wonders what the future will hold for the baby that has just come into the world.  Every parent knows what they want for their child – good health, happiness, a bright future.

The journey with our precious Jenna has been a bit of a roller coaster so far.  The months of pregnancy built the excitement and anticipation for her arrival.  Her speedy and relatively uncomplicated delivery provided a sense of relief and accomplishment.  Her arrival brought great joy and amazement.

Within hours of her birth, however, we experienced shock, confusion and devastation after the pediatrician told us that there were strong indications that our sweet Jenna Rose had a genetic disorder – Down Syndrome.

The days since her initial diagnosis have been a mixture of emotional highs and lows.  We’ve gotten back the genetic testing results which confirmed the diagnosis of Down Syndrome, but we’ve also gotten positive tests results back which show that kidney problems or congenital heart defects are not currently a concern.  All indications so far show that she is a very healthy girl.  There will be many visits to the doctor in Jenna’s future, but we know that God will be with us each step of the way.

We don’t know what the future will hold for our little angel, but I fully believe that God will give us the strength and tools we need to provide for her every need.  We know that Grant will continue to be the adoring and helpful big brother than he has been so far.  We know that we’ll always have the love and support of our wonderful family and friends, and we appreciate all the thoughts and prayers that have been offered up on our behalf.

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