1

A Nervous Mama

IMG_1265So the day is almost here.  Surgery day!  Peanut will check into the hospital at 6 am on Thursday morning to have her tonsils and adenoids removed.  I know, this is a simple procedure and its not a big deal.  Let me tell you, to a mama of a 2 year old…this is a big deal!!!  We have to hand our baby girl over to strangers and pray that they will return her to us safely.

I just finished reading this article… Anesthesia & Down Syndrome  and now my anxiety is even higher!!  My husbands response was “Stop reading these articles, pray and trust that God will take care of her!”  I know that God loves Peanut even more than I do.  I understand that He has a plan for her far bigger

than I can ever image.  I just need to stop focusing on

myself right now…and remember my job is to rely on Him.

IMG_1272

Please keep us in your thoughts and prayers this Thursday.  We for sure have to stay one night however the Doctor did tell us there is a possibility of a 2-3 night stay.  I will try to keep you posted.

 

0

Guest Mama – Mikey’s Story

I’d like to introduce you to Laura.  She is a beautiful mama I have had the honor to befriend through our Instagram Community.  Her little boy Mikey is just a few months older than Jana and is the cutesiest thing 🙂  I’ve asked her to share her story with all of you.  I hope to feature a new mama every week or so.  I’m so proud of the DS community friendships I’ve developed and know that these mama’s have a lot to share!! pics-from-jakes-phone-058

I found out I was pregnant with Mikey in the beginning of July, 2014. My husband and I were excited! We already had names picked out for either gender. My Dr offered to do genetic testing, but I declined it. We had a twenty week scan to find out the gender of our first baby. Our fingers were crossed for a boy. We really wanted our first baby to be a boy. The tech put the results in an envelope. We found out our baby was a boy a few days later at a gender reveal party. We were so excited!!!

We went to the birthing center on March 28, 2015 to have our baby boy. I was so nervous and excited! 17 hours later at 11:59 pm, Michael James Snyder entered the world! I was so happy and exhausted. All I could do was stare at him! He was perfect and he looked exactly like his daddy!
pics-from-jakes-phone-059
The next morning the pediatrician came in to do an examination on him. When she completed the exam, she told us that Michael had Down Syndrome. She didn’t offer any information or assign us a social worker. She just walked out. I put on a pretty brave face, but I felt shattered. My husband was solid as a rock, but I was a hot mess! It wasn’t because he had a disability, I was just very scared. I didn’t know what to expect. I had no idea that what terrified me at the moment would turn out to be the biggest blessing and our greatest adventure!

Michael has some developmental delays and some health issues, but he has a wonderful team of doctors and therapists that help us to help him reach his goals. Those are things we do to help keep him healthy and to reach his full potential. img_4575

Michael is such a pure joy to be around! He has shown us what true love is. He has such determination and grit! He works hard every day to do things that his other baby friends can do without a problem, but he always does it with a smile on his face! He’s taught us so much.

We recently had another baby. Michael adores his new baby sister! He showers her with hugs and kisses, brings her a toy or her binky when she’s sad, and steals her formula if I set it down where he can get it. He tries to crawl in her swing or bouncer with her to cuddle, then he’ll steal her blanket when I’m not looking. They smile at each other one minute, then make each other cry the next. He’s a typical big brother. I can see already that they will have a strong bond. I can also see them getting into a lot of trouble together. Hey, someone has to keep mamma on her toes, right?
img_20170121_095640_859
There are many days that go by that I wonder “What if?” What if I would have known about his diagnosis before he was born? What if I would have known what I know now after he was born and we received his diagnosis? Would I still have spent the first few months crying at some point each day? Would I have been so afraid? Honestly, I don’t know. I believe that God does everything for a reason. I can’t go back and wonder “What if?” When I know that through all of this we have become stronger. My relationship with my husband is stronger, my relationship with God is stronger and I’ve developed amazing friendships with so many families in the Down Syndrome community.
img_4566
I think the most important thing I would tell any parent that has received a Down Syndrome diagnosis is: Process those emotions and don’t feel guilty about it. It’s okay to grieve. It’s okay to be scared. It’s even okay to be a little angry. At some point all of those powerful and overwhelming emotions will turn into an incredibly strong love for your child. Support, encourage and nurture your baby! It takes a special person to raise such a unique individual! Sit back, relax and enjoy the ride!

0

Results Are In

You might remember reading about our sleep study (read about it here) that was done this past November.  Well, yesterday, we received the results.  And let me tell you, it wasn’t was I was expecting or all that thrilled about.  freespirt-3

We met with the pulmonologist and he said that yes in fact, Jana has mild sleep apnea.  She basically pauses in her breathing at least 4.5 times per hour.  He was actually pretty confident that number is probably higher on a daily basis.  Jana didn’t reach dream state during the study.  Maybe it was the 1,00o cords strapped to her tiny body that just wouldn’t let her relax enough. (Please read that last sentence with a very deep sarcastic tone!)  That was it, it was our answer to why it seems like she just can’t sleep, no matter what the day looks like.

What’s the culprit?  Her adenoids and tonsils.  They are taking up way too much precious space in her air ways, and must be fixed.  How do you say we do that?  Well there are two possible solutions.  We can try a slightly experimental way of using steroids and sprays to try to shrink them.  (Yes, her adenoids and tonsils can actually shrink!  Crazy I know!)  However, there is no research that shows this method works with children with DS.  He feels that the surgery would be the best rout to take because it will also benefit her overall breathing and help prevent her from getting sick so often.  The ENT will be the one who figures out the final outcome.

We currently have a follow up apt to see the ENT late March.  Her pulmonologist doesn’t want us waiting that long so he is trying to bump up that apt.  Also, her cardiologist will need to sign off on it to make sure her heart can take this procedure.  (Which yes, there is still a small chance she will need heart surgery as well…she’s going to give me a heart attack!)

So here we are.  After being ridiculously lucky and not having to have any surgeries or procedures, Jana will go under the knife.  It is a very routine procedure and usually they can go home the same day.  However we read they do often keep children with other health care issues overnight for monitoring.  I am not happy with these results.  I almost broke down crying when we heard the word surgery.  She is only 19 months old, and the thought of someone cutting her tiny body terrifies me.  But its for the better good right?  I have to trust that God will bring her through it and she will be 100% better!!  I’m also sure freespirt-1that she will probably have more surgeries in the future and honestly, we are very blessed that she is as healthy as she is.

This is just another thing that DS brings to our world.  Sometimes she will be perfectly healthy, and sometimes we will have to watch her do things that are just going to hurt.

0

With an Aching Heart

FullSizeRender-2Yesterday heaven received a warrior.

I’d like to introduce you to Walt.  He was born with Down Syndrome and a congenital heart defect.  He underwent countless surgeries and procedures to keep his heart and organs working. He spent way too much time in the hospital and not enough time being able to just be the precious little boy that he was.  He endured so much pain and struggles but with his loving family by his side, he kept fighting.

Yesterday, just 3 months short of his first birthday, Walt went to his eternal home. This past weekend he was sent home to pass in peace. Yesterday morning he FullSizeRender-3let go in safe in his mamas arms and ended his pain.  Now instead of pain and struggles, he is joyously in the arms of our Lord. No more pain, no more tears, no more surgeries, little Walt is finally at peace.

Since I read the news yesterday on Walt’s Instagram page, my heart has truly ached  for his family.  Today they awoke with a part of their heart missing.  Though they are at peace because they know his pain is over, it doesn’t mend the hole that I’m sure they are feeling.

I’m not just sharing this with you to break your heart. Many kids face these same struggles Walt faced each day. Jana was born with a congenital heart defect. By Gods grace she has not needed any surgeries, but that doesn’t mean she is forever in the clear. So many tiny lives are taken away sooner than their parents were wanting, but that doesn’t mean their lives weren’t worth it!  Some people feel that this is reason enough to abort Down Syndrome babies. BecauseFullSizeRender-1their lives might not be as “fulfilling” as typical children. I can pretty much guarantee that Walt’s family wouldn’t trade a second of his life to insure they had a “healthy typical child”. I’m sure they will cherish ever smile, every snuggle, every tear that they shared with their little warrior. Even though his life was short, it was worth it!!

For the past year Walt’s family have set up a fund to help other kids facing the same struggles as Walt. They’ve helped other families who are watching their little ones struggle.  They made sure Walt’s life had a purpose and that they were able to share Gods love with others. I encourage you to visit their site. Take a look at more photos of little Walt and see how much God has blessed this family.

Warriors For Walt

FullSizeRender

Sleep in peace sweet little Walt

1

Little Miracles

IMG_4045Today while Jana was finishing up her physical therapy, a young mom walked in with her little boy.  At first I couldn’t see him.  She had him in the car seat, but it was very clear to see the oxygen tank that followed him.  She sat down near me and pulled out this sweet, adorable, happy baby boy.  I asked how old he was and she said 9 months.  She asked me a little about Jana, she thought they were the same age 🙂  Little Eli not only had an oxygen tube to help him breath, but his head was obviously “deformed” (I hate using that word!  It was exactly the way God intended him to be!)  She informed me that Eli was born with a genetic disease that basically deteriorated part of his brain.  She was told that Eli would probably not make it to birth, let alone live after it.  She was encouraged to have an abortion at 24 weeks.  She said the night before her scheduled abortion, she cried and felt that it wasn’t her place to take his life.  She would trust God and be prepared to say good-bye to her baby boy at birth.  She told me she didn’t even have anything for him.  She had one outfit, and her priest available to baptize him, because the Doctors insisted he would die instantly.  Well little Eli survived!  9 months old and growing stronger and stronger.  He may never crawl or walk, but he is full of life.  He was very intrigued by his right hand and loved cuddling into his mamas arms.

We talked a little about how people count these kids out.  That they are so much more capable than people give them credit for.  He was her little miracle and she was so proud of the little boy he was.  It didn’t matter what disabilities he had.  She loved him just the way he was!

When I left I couldn’t help but to think of Jana’s birth mom once again.  She had the option to abort her and be done with it.  Instead she gave her life and trusted she would be loved.  I wouldn’t change anything about her and I am so proud of who she is.  I can’t believe how many tiny lives are taken away before they get a chance to prove themselves.  God has a purpose bigger than all of us for this little miracles.  We just need to stop being selfish and ignorant and allow them to be who God created them to be!

1

One Year Ago…

Exactly one year ago…jeremiah-29-11-white

Monday June 22, 4:10 pm.  I received a call from Maria, our foster care social worker.  She said she had a baby girl for us.  She said she had very little info on her, only that she was roughly 3 months old and had Down Syndrome.  If we agreed to welcome her in, we would also need to be willing to adopt her.  She needed an answer right away.  She told me to call Juan.

4:20 pm. I told Juan what she told me, and didn’t give my opinion at all.  I held my breath as I waited for his response.  He instantly said “YES!  Tell her we’ll take her!”  I hung up and called Maria right back!

4:32 pm.  I finally got a hold of Maria.  She had been contacting Jana’s social worker to try to get more info.  She already told him that she had a family who was interested.  (She knew me well 🙂 ) She found out that this tiny baby  had been living in the orphanage and recently was sent to a foster home.  That family was unable to adopt her so they needed to find a forever home fast.  She was healthy and beautiful…and also nameless.  She told me to start thinking of a name so they can start calling her it immediately.

I told the kids about her.  They were scared but so excited!!

4:50 pm.  Maria calls me back.  She tells me there is possibly another family who might take her.  She tells me she will make sure we get her and will call me back the next day.

I instantly drop to my knees in front of the empty crib we had set up in our room.  I had never met this tiny angel and already I knew she was suppose to be with us!  I begged and pleaded with God to please allow it to happen.  I felt like my heart was being ripped in two.  Like a mother who lost her child.

I walked out to the kids and they knew something was wrong.  I told them we might not get her and they started crying.  They too felt like she was suppose to be theirs and couldn’t understand why she wouldn’t be.

Juan finally arrived home and tried to be positive for me.  He kept reassuring me that if it was meant to be then it will happen.  He tried to help me see that it was out of my hands and I needed to trust God.

The next day comes and I still don’t have an answer.  Maria informs me that the other social worker is speaking with the other family and there is a chance he might give her to them.  I felt like screaming!  I told her to fight for us and she told me she would.  Little did I know that when she wasn’t calling me, she was texting and calling the other social worker constantly telling him why we should get her!  A whole day passed when we had no idea what was going to happen.

Juan spoke to a christian co-worker of his.  Looking for guidance and reassurance that this girl was suppose to be ours.  What did he get?  An honest and truthful answer.  He was told “What makes you think that God can’t do better than you?  How do you know that God doesn’t have a bigger plan in mind for her?”  We were only looking at it like we can be the parents she needed.  We were not allowing God to work out and trust that He had a plan.  Even if it didn’t include us.

By Wednesday afternoon I was an absolute mess.  Trying unsuccessfully to not think of this precious girl.  Trying to come to terms that it wasn’t going to happen.  Doing all I could to not be upset with God.

3:50 pm I receive a call from Maria.  She tells me Jana will be coming home tomorrow morning at 9:00.  Was I ready?  My heart stopped!  I think I asked her a few times if she was sure 🙂  She was laughing and I could hear how happy she was for us.  She told me to get a good night’s sleep because she was told Jana’s days and nights were reversed.  She would see me in the morning.

I called Juan and cried.  It was going to happen!!  Juan however would not allow himself to accept it would until he held her in his arms, but I already knew!  She was ours and no one was going to take her away.

In three days our world got turned upside down!  Without telling any of our friends or family, we deeply longed for this precious girl.  I never knew how deeply I could love someone I never met.  I was a mother who hadn’t held her baby yet.  I didn’t know what to expect when I saw her for the first time.  I didn’t know what color eyes she had or how big she was.  All I knew was that my heart was screaming for her!  I was ready to welcome her home!