The Story of Mitchell

Mar 04, 2010


I was 24.  Took the pregnancy test and had to do a double take to actually realize I was indeed pregnant.  I didn’t know what to do as I had so many emotions going through me…excitement, nervousness, and holy CRAP what are we getting ourselves into! 


After what seemed like a normal pregnancy, I went to get my 20 week ultrasound to check the baby and to also find out the gender.  After we found out we were going to be blessed with a boy, the ultrasound tech immediately left.  This being my first…I didn’t know if this was normal or not so I didn’t really read that much into it…my husband and I were just too ecstatic that this was actually happening and immediately started thinking of names.  The tech came back in and told us we could go.  I thought…well that was easy (besides the demand to drink 12 gallons of water so we can see your baby more easily and then let me push this little ultrasound device right onto that bladder that contains the 12 gallons of water….So surprised I didn’t pee on the table, but that’s neither here nor there). 


Two days after my ultrasound I got a call from my OB.  He said that during the initial ultrasound they found what they call “choroid plexus cysts” on his brain.  (Heart sinking into stomach at this point) and I really don’t remember a whole lot of what he said other than this is more common than people think and that 99% of the time the cysts dissolve and everything is ok.  So…I would need to go in for routine ultrasounds monthly to determine if in fact the cysts were dissolving. 


With family fasts, prayers, fasts and more prayers…the next few months seemed like a decade of a waiting game.  With each ultrasound…the doctor could see traces of the cysts dissolving {sigh} but that there was still some evidence of what looked like some cysts still remaining.  More ultrasounds.  More praying.  More fasting.  More anxiety.  More worry. 


At my 36 week ultrasound- the doctor literally checked EVERY millimeter of our little guys tiny body: brain, femur, neck, face, lungs, arms, legs, kidneys, heart, stomach, fingers, toes…you name it, it was checked and he turned to my hubby and I and in his exact words he said “well, it looks like you’ve got yourself a perfect baby.  No cysts are found and have dissolved completely.” 


Words can’t express the amount of joy that came from hearing that news.  Our prayers were answered.  Our fasts were reaffirmed.  Our beliefs were strengthened.  Our excitement resumed and the baby was soon to arrive.    


At 37 weeks…I started to have contractions that were not the usual Braxton Hicks that I had previously been experiencing.  I waited it out at home and went every 8 minutes with EXTREMELY uncomfortable contractions, but felt it wasn’t time to go to the hospital just yet.  It was then, that my husband and I prayed together for strength to endure the upcoming process of giving life to our little one and to be blessed with patience and security in my life as well as our baby’s life. 


After the contractions got to the point where there were almost unbearable I assured my husband that I thought it was time and we needed to go ASAP!  He asked if I wanted to shower and get ready… “ARE YOU KIDDING ME?!” A shower was the last thing on my mind…just get this baby out of me.  Since then, I have a motto for men:  No uterus- no opinion! 


We were immediately admitted to the labor and delivery room because I was dialated to a 4 and 100 % effaced.  I asked about an epidural.  They told me the anesthesiologist was in an emergency C section and couldn’t come right now but would be in shortly.  HA!  Right after I was told that…my body and my little stinker of a baby decided he wanted to challenge his mom’s pain endurance and I dialated from a 4 to a 9 in 30 minutes. (‘Braveheart’ screaming in pain was involved: just a sidenote) My doctor came in and said the epidural was most likely not going to happen.  Now this is the part where I started to hyperventilate because what I had been taught in birthing classes and stories from my friends was the complete opposite of what was happening to me.  Due to the stress my body was under, the baby’s heart rate dropped dramatically to 60 and my doctor had to then perform an episiotomy (mind you without an epidural…only a topical anesthetic).  He had to insert a vacuum and basically said “you push…I’ll pull”. Well, at 10:42 am on Nov. 15, 2006 Mitchell Steven was born weighing in @ 6 lbs. 8 oz. and 19 in. long.  Hands down… THEEEE hardest most painful experience of my life, but I was AMAZED at my capability to DO IT!  With no medication and actually no preparation for no medication, I DID IT!  I was feeling like: I am woman- hear me roar! 


Now this was the part where I had heard from friends and neighbors that the best part of delivering a baby was when they placed the baby on your tummy to do whatever they needed to do “down there”.  Well, that didn’t happen for me.  They immediately whisked him away and that was that.  I sat there in complete and utter shock from A) what had just happened in the last 45 minutes and B) WHERE WAS MY BABY I worked so hard for! 


They placed him in the nursery with oxygen saying his O2 saturation levels were wavering between 85 and 90 where it needed to be 90 to 100.  That was all they told us.  I was in the room recovering so I am getting back and forth updates from my poor husband who bless his heart, was trying to keep his wife sane and not worry about his baby.


Fast forward 6 hours.  They had since been advised to move him down to the NICU.  Again, with no explanation…we were trusting that they would soon tell us what the heck was going on!  I hadn’t even held my baby.  Family members and friends who had heard I had my baby stopped by and kept asking “Where is Mitch?”  GOOD QUESTION!  No one would tell us anything.


Finally around 8pm I had had enough. I told my husband to call down to the NICU to see if we could meet with the neonatologist and get some answers.  He was very compliant and told us to come down immediately because he had to “talk to us”.  Right then, I knew. I just knew something was wrong.  That wheelchair ride from floor 2 to floor 1 was what seemed like a lifetime and by the time we entered the NICU- the nurses aren’t very good actresses because their faces looked at us with pity and sorrow.  I wanted to curl up in the fetal position and pretend this wasn’t going to happen. 


The doctor had me take Mitchell, who was swaddled at the time, with tubes coming in and out of his tiny little body, and he unswaddled him in my arms.  He started pointing out his physical features…such as:  “see his ears have less cartilage and hence they seem a little floppy.  See his almond shaped eyes.  See his short neck.  See his toes, where there is a space between his big toe and the rest of his little toes.  See his upper thigh, how it is shorter than normal.   See this straight line across his left inside palm- that is called a semian line.”  Ok…doc, what are you getting at.  This is my first baby.  Do they do this with every baby…”here is your sons nose, here is your daughters eyes…as if you couldn’t tell on your own.  I think the doctor was prolonging the news that our son was indeed born with Down Syndrome. 


*Total sidenote…when my husband and I actually got to look at our baby, I told him that Mitch had his little squinty eyes and my husband told me that Mitch had my toes with the space in between the rest of my toes. As we laughed and saw what physical characteristic our baby had between us both. So while we were told this –after the doctor left- we joked around and said…so do we look Down Syndrome?  We shared a good laugh.  And then after the laugh came a lot of tears.  Tears of fear.  Tears of the unknown. Tears of anxiety and doubt that I didn’t think I could do this on my own.  Tears of relief that he would still be able to live.  Let’s just say…lots of tears. 


The doctor gave us a few minutes to gain our composure and left us alone with our little guy.  We prayed together for strength to do this.  That we knew the Lord had given us our Mitchell because he knew we could handle it.  We just needed affirmation from the Lord. 


We re-swaddled our little guy and headed back up to my room where my brother, who is one of my closest friends, was waiting there with his wife.  I immediately broke down and told them the diagnosis.  I asked for a blessing.  I feel it appropriate to share with you the blessing that was given to me…even though I don’t know you physically- I feel like I know you emotionally…in more ways than one.  


I was blessed with strength to endure this trying time in my life.  I was told from our Heavenly Father that Mitchell had chosen me to be his mother because he knew I would not be embarrassed by him and that I could give him the fullest life he needed and deserved here on earth.  I was blessed with courage. I was assured that my Heavenly Father loved me and that Mitchell loved me too. 


The power of the priesthood is indescribably wonderful. 


I did suffer a loss that day.  Not a loss by death per say.  But a loss of “the perfect baby” the doctor told me I was going to have during my ultrasound.  I had put so much trust in this “expert” and ran with it.  (I was told that doctors call it ‘their practice’ because they literally are still practicing…how comforting!)


I was however, comforted to know that even though Mitchell is not perfect by the world’s standards:  he won’t ever get a drivers license, go to Harvard, or even marry in this lifetime. However, in the Lord’s eyes he IS perfect and all he needed was his cute little Down syndrome body.  I am still struggling with the grief of seeing him at his 3 year old age not being able to do what other 3 year olds are doing.  For a while…it was ‘if I can make it through this day, I will give myself a pat on the back’ sort of thing.  Since then, I have come to know with NO DOUBT that Mitchell was indeed brought to us for a purpose.  He not only is the life of the party…he is SOOO in tune with the spirit that when I am having a moment of stress, I go into his room and ponder because I know the angels are just chillin’ in his room.


So here is my story.  I want to thank you, Molly,  for the healing power you have shown to me and to many others that survival from a tragedy is possible.  It is not instant.  In fact, it is not easy by any means.  But it helps to know there are other people willing to share their stories and band together to help one another in times of sorrow.  Thank you for your example.  Thank you for your sprit.  Thank you for your humor.  I LOVE your humor. 







Suzette Baird on 03/04/2010
What an amazing story. I have a little brother with Downs and I couldn't agree more. He IS so perfect in every way, I wouldn't change anything. Thanks for sharing and you have so many blessed, hilarious years to come. They are amazing children.

Jen on 03/04/2010
Hey Jen, it's Jen Wade... just read your story, I've heard most of it before, and I cry every time! I want to be like you when I grow up! The Mitch Man is a lucky boy, I know why he chose you!! Thank you for being you!

Shara on 03/04/2010
Your son is beautiful, just like his mother! Thank you for sharing your story of love, faith, & courage. Mitch is so blessed to be in your family!

Autumn on 03/04/2010
I have a 10 month old son with DS. Like you we found out after he was born about it. He was also in the NICU. But I honestly don't understand how you could be so upset about it. They are by far the most perfect children who won't make those mistakes that "normal" children make. It really upsets me to read blogs like this. To compare this to a death of a child is beyond me!

Nancy on 03/05/2010
I love this courageous story. I'm still crying. Mitchell is a blessed young man. Beautiful words; your are a great writer.

Charlotte on 03/05/2010
Thank you for sharing these experiences with us. I love your faith and courage. One of my twin boys passed away 20 months ago when he was almost 19 months old. I think sometimes when suffering or grieving the loss of the life we thought we were going to have it can be such a lonely experience. It helps me to see that there are so many people that have to readjust expectations for a variety of reasons. Somehow it is less lonely to see that we are all trying our best to be happy in the situations we find ourselves. More and more I realize we need to just be gentle with each other.

Shannan Hoffman on 03/05/2010
My daughter does not have Down Syndrome, but she does have multiple disabilities and I completely understand the shock and grieving when you first find out about your child. It was like that for me as well. Thankfully, in the year since I found out, I too have been blessed beyond words. I do mourn the thought that she may never walk, talk, sing, or dance, but I am comforted knowing I have an angel in my home. Thank you for sharing your story.

Jenn Clark on 03/06/2010
Wow, you told that sory beautifully. My mouth dropped open when I saw his baby picture- what a gorgeous gorgeous baby & photograph! Thank you for sharing your story. Thanks for making me giggle, too- how wonderful to have humor about things. I am working on that. :) Autumn, sometimes I grieve for the opportunities my siblings & I won't have in this life because of various health concerns and disabilities. I think any loss of a "plan" or expectations for somebody's life result in grief. On a completely un-related note, I really like your name! I've never met anyone named Autumn before!

Jill on 03/06/2010
I think this is a site of support and comfort. While one's experience may differ from anothers, we all grieve in different ways over different things. Let's maintain an atmosphere of love, acceptance and understanding....regardless the source of your grief. Great Post...darling little Mitch.

Sarah on 03/06/2010
What a sweet little face on that boy of yours.

Miggy on 03/08/2010
I too loved this post. It's very timely for me.... Autumn, I hope you realize now, or come to realize that your experience is not everyone's experience. And further, I really hope that you don't make others feel shame for what are natural and normal feelings--a loss is a loss and something to be mourned. Whether it's the loss of expectations or the loss of life.

Steph Krauss on 03/08/2010
What a story, Jen. Thank you so much for sharing it. When I read your blog, there's no doubt in my mind that you and little Mitch were meant to be together. He is so blessed and I know you feel blessed to have him a part of your life. :)

Bridget on 03/08/2010
I had never heard the full story of Mitchell, just the bits and pieces passed down through the extended family phone line. Mitchell truly is the life of the party and he has such a fun mom and dad that he will definately be able to do anything his little heart desires. It takes a lot of courage to share your honest feelings for others to comment on. There is a type of mourning for the things you thought he would do but as you know, other things that you probably never would have experienced have come your way and blessed your wonderful family. I am glad you found this site and I know that your story will inspire others.

Judy on 03/09/2010
I'm Jennie's sister and having gone through this experience with her, I will say she is MORE than validated to share her feelings about what was a terrible time in her life. Autumn, she wasn't comparing her experience to the loss of a baby. She adores Mitchell and knows he is a perfect little spirit sent to earth in an imperfect body. She was just honestly sharing her feelings about how the loss of her expectations affected her. I think it takes a lot of courage to be that open. P.S. Mitch rocks! :)

Leslie Miller on 03/10/2010
Congratulations Jen and welcome to this world Mitchell. Thank you for sharing your sacred grief and pain. Beautifully done. I'm Suzette Bairds' mother and mother of 18 year old Joseph Henry who has Down Syndrome. Don't even start me on how lucky you are because I remember well the fear and sorrow and being told you've received a miracle doesn't really compute right now. The acute pain you feel now pales against the absolute joy that lies all along the road you are on. You will love it and will almost panic with gratitude for this gift and the thought that you might have missed it. I promise.

Kelli on 03/11/2010
Your baby is a beautiful and blessed gift. Thank you for sharing your story and opening my heart.

Kairi Fail on 03/15/2010
I loved hearing your story! My Son Jacob has DS as you know and I can't wait for Mitch and Jacob to be in the same class again. (I hope its possible. I read your story at work and just burst into tears. You are a great Mom and Mitch is so lucky. Thanks for your inspiration. I feel the same about my littel guy Jake. I hopr to see you and Mitch again.

Heather S. on 03/22/2010
I too have a little brother with Downs. The resources today out there are amazing compared to what they were when he was born 30 years ago. I'm so thankful for the influence he has had on my life and the special spirit that he brings. My Mom has given her life in a way that others including family may not ever understand, but I know one day he will thank her for the sacrifices she made for him here on this Earth. Your future children are in for a lifetime of blessings from their brother. Guaranteed.

Sarah Linton on 04/09/2010
Jen, you are an amazing woman. Thank you so much for sharing your story. I remember when my son, Jacob, was diagnosed with autism. It felt like the world was ending. Jacob really is doing well, but there are times, in all honesty, when I am so envious of my sister and her five "normal" children. Thank you for reminding me that my child is, indeed, a blessing. You give me hope. Love you, precious girl!

Emily Blewitt on 04/15/2010
Mort- Thank you for your incredible thoughts. They were real, raw and beautiful. You are a woman full of insight, optimism and realism- what an incredible combo. Mitch is so blessed to have you. In reference to your blessing: one of the first things I noticed about you is that you don't judge others. You are open-minded, hearted and full of love and compassion. Your blessing was indeed from our Heavenly Father.

Spencer Jackson on 07/05/2010
Thank you for sharing. I have a disability called cerebral palsy--my story is the first post in this category. I just wanted to say that loss of expectations is very real. Even in my life, even though I have always had my disability, there have been times (pity parties) where I have had a realization of something that simply will not be possible for me in this lifetime. The one that stands out is that when I was maybe 15 or so, my mom told me I probably wouldn't be able to serve a mission. I'm not sure this had really occurred to me exactly. Growing up in the LDS church as a boy, it's one of those things that can be often taken for granted. I remember crying hard as my mom and I talked about it. This is the most-readily recalled example from my life about a loss of expectation. Loss of expectation is very real. I am 23 years old and am basically prepared for the idea that I may never marry in this life. My mom and I have had discussions to prepare me to realize this as well. (I have not yet had a pity party yet, though...maybe when I turn 30...then again, a lot can happen in 7 years). It is a little hard as I see many of my friends get married. I am grateful for the foundation of the gospel, whereby I know that I can be married in the next life, if not this one. But yes, loss of expectation is very real. Thanks for sharing your story. I am glad to see more stories on the issue of disabilities. I just know that God works through many means, and one is through those of us who have extra challenges, and we all have ways we can inspire each other.

L. L. on 09/09/2010
Oh honey... he is BEAUTIFUL and he IS perfect!

Danielle on 03/09/2011
He is the most beautiful little man!

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