My Baby has Down Syndrome

Many of you reading this may be offended by my brutal honesty, and many of you may think I have lost my faith in God.  On the contrary, God is good and although we may not always be able to understand His plan for us, I have been absolutely amazed at the little things HE has sneakily done to prepare me for this moment.  Including me jotting this down in my journal,

"God does not promise to bless us by removing suffering, but to bless us through our suffering."  Tim Kellar

I also oddly enough chose this verse for my verse of the year, and have it as my wallpaper on my phone...

Phillipians 4:6 Do not be anxious about anything, but in every situation, by prayer and petition, with Thanksgiving present your request to God.

 

As for the offending part, it is not my intention at all, but I've realized we must give people grace to express themselves.  We often don't know the right things to say.  Actually through this I've learned a flaw of mine is filling the void or the silence with words.  Please don't think I'm judging you if you've talked to me this past week.. I am NOT!!  I dislike not knowing what to say to someone hurting, and realize I probably say too much.  Sometimes the best thing is to just smile, hug if your close, say your praying and definitely send a message later letting them know you care.  Honestly, this may sound very weird, but the best response Jed and I got was a college friend of Jed's saying simply, "That sucks!" because yes it does.  Getting unexpected news that you may not understand does sometimes suck, excuse my language.

 

I am choosing to blog about this for a couple of reasons, but the Number 1 reason is that one of the first things I did, other than CRY, was google mom blogs on Down Syndrome, and sure enough, I WASN'T ALONE.  It made me feel better to see that other people were having the same feelings I had!  I felt guilt about crying because I didn't want my little guy to feel unwanted or unloved in there. 

Let me walk you through it.  I am 35 years old and my husband and I couldn't decide on a 3rd child.  We decided to leave it up to God, and sure enough right before Christmas we found out we were pregnant.  One of the first things I said to my husband was, "It's a Boy, and something isn't right."  (God helping me prepare perhaps)  We went to an OB who grew up with my husband and is a friend.  (Also, weird... we delivered our other 2 in Springfield, MO, and didn't know who to use here.)  I mean come on you don't want to go to your gynecologist and then go eat with them. :)  I decided right off I wanted to do the early screening, a blood test combined with an ultrasound.  NOPE, no concerns!  Down syndrome is NOT something we need to worry about!  GREAT RELIEF.  Our next ultrasound you can see here:  It's a... BOY!  On that ultrasound, they noticed something with my baby's kidney and sent my ultrasound on to a high risk specialist.  No concerns with the kidney, but my baby had Ventriculomegaly, which means he had extra fluid on his brain, but his case was mild.  This is NOT necessarily a sign of Down Syndrome by the way.  Because of this finding, we did 3 more tests.  The final genetic test wasn't necessary, as we had already done the earlier screening, but it was just a blood test, and I wanted to be prepared so I did it.  That test is very new, about 2 years, extremely accurate, over 99%, but not FDA approved yet.  It's called Panorama Prenatal Test or another term is free fetal DNA.  The other tests came back fine/normal no concerns, and remember we weren't worried about this last one.

Monday, April 7, Angela, our OB's name popped up on my phone.  Before answering, I turned on PBS for my 4 year old, and luckily she was completely enthralled.  I said Hi cheerily, there was a deep breath, and then in a very sweet voice, "Oh Heidi."  and then she told me.  I asked how accurate the test was, and she said although it WAS new, it was over 99% accurate, and my little boy tested over 99% likely to have trisomy 21.  She asked if I wanted to see a specialist and I said the sooner the better.  I thanked her, and told her I needed to call Jed who was working at Section 1 about 30 minutes away.  I called and told him, "He has Down syndrome."  (sobbing) Again I heard Oh Heidi, and I hung up.  I snuck upstairs to my room with my phone in hand and googled Down syndrome.  As I read the long definition, explanation, and common markers I burst into uncontrollable crying again.  All along feeling guilty. 

I read everything I could and 2 things helped me more than anything. 

1.  I read this wonderfully written, right on, explanation of how it feels to find out your baby has Down syndrome...

Welcome to Holland by Emily Perl Kingsley on the National Down Syndrome Society page, www.ndss.org.  I highly recommend looking at their website.  By the time my husband arrived home I had read the 48 page expectant and new parent section.

2.  I had also Facebook messaged a friend, Deanna, who has a daughter with Down syndrome. (I've learned Facebook isn't evil, and can definitely be used for good, and I have a whole new appreciation for my smart phone :))  She said something that helped me immensely, "Don't feel bad about needing time to Grieve the IDEA of what you had thought your third child would be like."     That statement allowed me to let go of the guilt I was feeling about crying and yes grieving.  Jed got home, came directly upstairs to our bedroom and collapsed on our floor crying.  I simply held him sobbing myself.  I told him about what I had read.  We were/are so unknowledgeable, and let's face it, the fear of the unknown can be terrifying and overwhelming.  

In the midst of this I guess we came downstairs, and I received a call from the specialist to set up my appointment I had requested for Wednesday.  I hadn't asked Angela the doctors name or where I was going!  I did get that information on the phone and they explained the amniocentesis, in way too much detail I might add.  She explained to me that they did not numb your belly because once the needle pierced your uterus the extreme burning and pain would take away from your belly pain.  (Somebody should make her a script!  However, for a moment I stopped worrying about my baby having Down syndrome and began worrying about the amnio. :)) We were able to choose whether to do the amnio or not during our appointment.  I called Angela back hoping she would tell me for sure my baby had Down syndrome, but 99.9% left a little tiny piece of hope and doubt in the way back corner of my mind. 

Jed decided we couldn't sit and mope so we made arrangements for Livie, our 1st grader to be picked up from school, took Claire and headed to Wichita for parts for the farm.  I sat sometimes like a zombie, often with tears silently streaming down my face as we drove to different tractor supply stores for parts.  Jed then took me to TJMaxx while he and Claire got something to eat.  I found a baby boy jacket and when Jed walked in I held it up and he burst into tears again.  I took Claire and we found a Big Sister book and a toy tractor!  Jed called and said he was next door which was apparently a mattress store, and that he had bought a mattress for our oldest!!!??  Um Ok apparently she needed a mattress.  I even went to Old Navy and got some maternity clothes on sale.  Weird I know, but it was therapeutic to be out, and yet not feel like we would run into anyone we knew.  We took turns being strong, and our daughter didn't even know we were upset.  Maybe there is such a thing as retail therapy.  As we drove back home with a mattress in the back I said, " I guess this is Holland." 

  The first couple of nights I would go to sleep emotionally exhausted, but wake up crying in the night.  Jed would assume the position and hold me, I would sob shaking our bed violently making his shoulder and chest our own personal puddle.  I would be better during the day, and even said I was excited on Tuesday.  I had made a Down syndrome pinterest board, and read a lot more.  However, My prayer was still, "Lord PLEASE take this from my baby if it be your will, and if not give us strength."  But trust me the first part was much louder than the second part.

 

AND THEN WEDNESDAY CAME, and I had to go to the specialist, and he was going to look me in the face and tell me my baby had Down syndrome.  I told Jed I wasn't going and I didn't want to hear it.  Jed said we already knew this.  I didn't care I didn't want to go!!  Maybe if I didn't go in this wouldn't be real.  I felt physically ill and dry heaved in the parking lot, but we did go in and the people were wonderful.  We loved our doctor, and the entire staff!  Jed saw our baby on the sonogram screen, and it was like a switch.  He smiled and said, "That's our little boy, and he's going to be ok."  He didn't need the amnio to know his son had Down syndrome.  Jed was much better after that moment, less crying, still a little fear, but he knew and he was ok.  I on the other hand hadn't received what I needed.  I don't know if you know this, but you can't see many signs of down syndrome on an ultrasound, and in fact my son showed NONE of the markers.  The doctor looked me in my face and told me if I were to have 1000 babies, 999 would have Down syndrome, and I heard so 1 might not!!  I knew I had to do the amnio so that I could move on!

 

We were supposed to receive our results on Friday, but they called apologetically and said it would be Monday.  Monday came and they were having computer issues... what are the odds.  Angela called about an hour later with our results, and again I cried quietly and called Jed.

 

Brutally Honest Feelings I had:  I just want to rewind, and go back to watching 2 perfect little girls open up a box full of blue balloons. 

I saw a show in one of my sleepless nights where 2 teenagers were on drugs got pregnant and had a perfectly normal, healthy baby and thought how is that possible. 

Most of all I was and still admittedly am afraid of the future.

I worried about my daughters having to care for him when I was gone.  The things he may not be able to experience, people making fun of him, financial responsibilities, and others, but mainly I just cried.

I say these things not to hurt my little boy, and definitely not to offend anyone including parents who have children with special needs with my ignorance, but because I want people out there to not be afraid to feel things, and to have thoughts you truly wish you didn't have.  It happens.

I still love and trust God and I still love my little boy with my entire heart, but I am human and fall short, which is why I'm so grateful for Grace.

 

Moving On, Positives, things I'm Grateful for & Aha God Moments

 

God you truly are a sneaky guy....

 

What are the odds that Livie's best preschool friend would have a beautiful older sister with Down Syndrome, and that they would just happen to attend our church? 

 

I could not be more grateful for this little girl's mother, Deanna, who has faithfully answered my messages, given me doctors names, things to be aware of and Hope.

 

Why would I have taken sign language rather than Spanish in college when the clear choice should have been Spanish? 

My family and I are currently learning basic signs and trying to use them as we talk to each other in order that we may support our little guys communication.

 

I am thankful for friends and family support and the outpouring of prayers, I can actually feel!

 

I am thankful for my smart phone!!  I have been able to sit on my own coach and read and research as much or as little as I like.

 

With that, I'm thankful for Facebook, yes you heard me right, and Pinterest!  On the Wednesday of my Amio I did something I have never done, and asked for prayers on Facebook, and it was truly wonderful to see people post sweet things, and to know and feel that they were truly praying for my little family!!  It also allowed me to contact Deanna immediately.  AND Pinterest... who knew there would be so many things to Pin about Down syndrome!?    

 

I'm thankful for all of the outreach programs so very close to us.

 

I'm thankful for my Bible study group who have opened my mind to Newton and God's Grace.  They are wonderful examples to me, and I hope lifelong friends.  I know they are praying for my baby's health and strength and peace for our family.

 

I'm thankful for this scripture in Matthew NIV,

Matthew 6:34

Therefore do not worry about tomorrow for tomorrow will worry about itself.  Each day has enough trouble of it's own. 

 

and in the Message

Matthew 6:34

Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow.  God will help you deal with whatever hard things come up when the time comes. 

Can I get an Amen

 

Finally, a major necessity WATER PROOF MASCERA, because sometimes you don't want to look in the mirror and SEE how you Feel!!

 

 

In closing, I would ask that you pray for our sweet, and I'm guessing probably ornery little boy, as much as he moves.  We are praying fervently for His Health and strength and peace for our family.

 

Romans 8:28

In All things, God works for the good of those who love Him.

 

And check back in if you want to know more about "the little things" we encounter in Holland.