Heartache and Hope

This past April, I went to a Beth Moore conference with a few of my home girls and she challenged us in the way we describe situations going on in our lives.  Things are irritating, challenging, or hard.  She said, "Ladies, we need to stop saying things are hard when really those things are irritating."

Well, the past few weeks we have experienced some hard news.  Many of you have experienced this same heartache.  I am sorry.

January 7th, 2015 is 28 weeks days away.  I know this because at the end of April we found out we were pregnant with our third child and this was the due date.  We were excited and anxious all at the same time.  The weeks leading up to the first appointment felt like years and I couldn't believe we were going to have another baby.  Wasn't my baby Jack just born?

We weren't exactly sure on the due date so we got to see our little blessing on the ultrasound at 6 weeks, 2 days.  Seeing this little miracle and his/her heartbeat on the screen put tears in my eyes and was reality that we were having a baby!  They noticed I had a subchorionic hemorrhage and that I was not to do any exercise, lifting. or anything strenuous.  I had one of these with Jack and had to take it easy for 3 weeks.  So basically I got chubby for the past 9 weeks.

Here is our sweet baby at 6 weeks, 2 days old.  

Today, I was hoping to share the exciting news that we were 12 weeks pregnant and Jack and Luke would be big brothers to this new baby coming in January.  But instead, we were at the hospital because I had to get a D and C.  At my 9 week appointment they wanted to check to see if the hemorrhage had cleared up.  This was at the beginning of June, 4 days before the we did our Jogging for Jack event at the 5K.  When the ultrasound tech checked the baby I just got this feeling that things were not looking good.  He started measuring the baby and I was looking for the flutter where we had seen the heartbeat 3 weeks earlier.  Nothing.  I could tell in the tech's hesitation that it was not good news.  After he announced that the baby no longer had a heart beat, I felt the warm tears streaming down my face.

I waited in the room for the nurse practitioner to come talk to me and just wanted to call Chris.  She came in and explained that my body would recognize that the baby is no longer living and I would miscarry in the next few weeks.

Hearing Chris' voice made me breakdown.  I explained what happened and I cried for the next few hours which later gave me the worst headache ever.  I called our family and friends and shared the news that we were no longer pregnant and that I would miscarry anytime.

Because I wasn't able to do any sort of exercise the previous three weeks, I strapped on my tennis shoes and went for a run.  I stopped, cried, ran, jogged, stopped, cried and ran more.  I came home and looked at my boys and just held each of them a little longer.  I held Chris and just was so very thankful that he is my husband.

After waiting 3 weeks for my body to naturally respond, I had to schedule the procedure to help expel the baby.  I thought I had emotionally processed all of it, but as I was filling out the forms this morning I came across the document that asked what we wanted to do with the baby after the procedure.  Ugh.  My baby, what do I want to do with my baby?  We chose the option that is offered to everyone that goes through this process.   They take the babies and honor their lives by burying them in a special spot with other sweet babies that didn't make it to birth.  Our hearts are so heavy and many, many of you reading this have gone through this heartache and lost a sweet baby or babies.  I am so sorry for your loss.

There was a moment that brought me back to Jack's birth and delivery.  I had to be sedated and having the oxygen mask on me and as they extended my arms out to the side all I could think about is that evening on March 25, 2013.

I woke up about an hour later.  I never respond well to sedation and medication and was very nauseous. I threw up numerous times and after about an hour, Chris and I were able to head home.

This experience was painful, heartbreaking.  From the pain of loss, the frustration that my body wouldn't respond, the patience each day, the reminder that I am carrying my child in my womb that will not make it to birth.  But through this, God continues to show His faithfulness, His comfort, His love, and His goodness.

I am thankful my doctor could be there, to give me comfort, and to share in the grief.  I am thankful for my husband who constantly challenges me to trust in all circumstances.  I am thankful for my boys who are miracles, like each and everyone one of us.  I am thankful for our families and friends that share in our grief and give us encouragement and strength.

My friend called me the day we found out that our baby had passed away and she shared this from Jesus Calling:

Welcome challenging times as opportunities to trust Me.  You have Me beside you and My Spirit within you, no set of circumstances is too much for you to handle.  When the path before you is dotted with difficulties, beware of measuring your strength against those challenges.  That calculation is certain to riddle you with anxiety.  Without Me, you wouldn't make it past the first hurdle!

The way to walk through demanding days is to grip My hand tightly and stay in close communication with Me.  Let your thoughts and spoken words be richly flavored with trust and faithfulness.  Regardless of the day's problems, I can keep you in perfect Peace as you stay close to Me.

I am thankful for the HOPE I get in God's promises.

God, I walk hand in hand with You as You give us strength for this climb. 

"I loved today." Jogging for Jack 2014

As I laid my head down Saturday night, I said to Chris, "I loved today."

What.A.Celebration.

The day started off with thunderstorms and dark skies.  I was imagining all of us sitting in our cars waiting for the 5K to start and no one at the start line because of the down pour.

But it passed, thankfully the clouds kept moving, and a few sprinkles made for perfect running and walking conditions.

We were able to get a group picture before the start, missing about 10-12 people, but with such a large group it was the best we could do at the moment.

High school and college friends, family, roommates, coworkers, coaches, players, friends we hadn't seen in years, neighbors, cousins, uncles, small group friends, and friends of friends.  Not only were we there with all of these people, but they brought their families.  Some of them did their first 5K! Awesome!  Some of them drove over 4 hours to be with us.  We are blessed by each of you, your love for our Jack, and coming out to celebrate people with Down syndrome means more than you know.  Thank you.  

Jogging for Jack helped raise over $3,000 for Gigi's playhouse and many of you helped us get to that number.  Again, we are just blown away by your generosity.  Your donations will help Gigi's provide free programs to people with Down syndrome and families.  The Twin Cities location only has one paid employee and tons of volunteers.  If you ever are in the Hopkins area, stop in and see the amazing environment that Gigi's provides.  Check out their website here.  There are many areas where you can help besides monetary donations.  Check out their wish list which includes office supplies and more.  

Chris and his friend, Ryan, crossed the finish line 1st again with a time of 17:40.  Repeat!  Last year, Chris casually walked to start and thought, "I'm going to win this for my son."  And this year, he had to live up to his last year's performance, and he didn't disappoint.  

 The kids dash was about 10 yards long and Luke would describes his performance like this, "I shot out like a rocket!"

To have young children Jogging for Jack brings tears to my eyes.  I am so thankful to have kids that will grow up with Jack and learn more about people with Down syndrome.  Thank you for sharing with your children how Jack is beautifully created like they are, that there isn't anything 'wrong' with him, that those that have Ds can do many of the things that they can do, and that he deserves the same opportunities and respect as anyone.  Explaining that Jack may do things a little differently and need extra time to accomplish things, but he will do great things and has great potential like each child does.  I love your children and I am so thankful for the sweet friendship and love they will have for Jack.

I love my family and yours too.  

Of all the marathons and runs I have done, there is nothing that beats the feeling of running for your own son.  It could bring me to tears thinking about it.  Then to have people that are there in the rain and cold, taking time out of their weekend, generously giving, and sharing the impact that Jack has had on their lives, fills me with a feeling that is so hard to describe in words.  

"I loved today." 

This guy still makes my heart flutter after 8 years and I am so blessed to have him as my husband and such an amazing dad to Luke and Jack.  He encourages me in a lot of ways, especially by being a hard worker at whatever he sets his mind to.  So proud and thankful for him.  

We had some interest in more Jogging for Jack shirts.  If you didn't get a chance to order before the deadline in May and are interested in ordering one, we may order a few more in the next few weeks.  They are $15.  We will keep the same shirt for the years to come and do an order each year.  Please email: joggingforjack@gmail.com

We are already excited for next year's event.  If you weren't able to make it this year and are free next year...come join us!  I promise you will have a such a great time!   

Again, we love you and are so blessed by each of you!  Thank you.   

Phil 1:3 

GOLD

Jack turned 14 months at the end of May and we are very thankful he stayed pretty healthy all month!  Just one fever that filled me with the fear that it was RSV and was hoping it wasn't anything like his days at the beginning of April.  He also welcomed a molar!  Yowsa!  His seventh tooth was a molar!  I was doing some routine facial and mouth exercises with Jack (who would have guessed you needed to strength the tongue muscle for help with speaking and clearing food and also rev up those facial muscles to smile and help with closure of the mouth ) when I put my finger in to massage his gums and there it was!  Boy, does that kid have a good bite!

His one year check up was a little late based on his after birthday party shenanigans that landed us in Children's.  His pediatrician has always been impressed with Jack and has treated him like any other patient he has.  He went through all the general questions and it was so exciting to hear him wrap up the visit expressing how well he thinks he is doing.

Jack is babbling like crazy and it just happens to be when he is suppose to be getting ready for bed.  He loves grabbing people's faces and squeezing.  He says Dada much more than Mama ;), but what surprised me most was when he brought his hand to his chin and signed the word, Mama.  He can feed himself crackers and recently picked up cheerios and peas and put them in his mouth.  Some made it in, some Bella enjoyed.  His favorite food is avocado and he would eat a whole one if we let him.  From the looks of his belly, he might need to get on his dad's training schedule soon. :)

He can push himself up on all fours, and before he got sick was ready to surge forward.  It took a lot of effort to get his strength back and just now is starting to sway side to side and I am hopeful he will be motivated to move forward.  We go to PT twice a week and OT comes to our house once a week.  Speech is twice a month.  Again, we feel extremely blessed to have such great therapists, to have the resources available to us, and a happy boy.  So far, he enjoys therapy but when he's tired or hungry he shows his toddler attitude.

Today, he had an Auditory Brainstem Response hearing test.  The results were inconclusive at the follow up test for the tubes he got in March.  He kept looking at the lady in the booth instead of the dancing tiger in the corner.   I think he liked charming the audiologist more than the toys.  :)  Here are a few pictures from today's appointment and I had to make sure that he didn't rip the stylish headband off during the test.  Gillette has the new equipment for the ABR so he didn't need to be sedated.  Trying to get a 14 month old to sit and play for 45 minutes while wearing a bunch of cords on his head is quite the job.  I had to work on my hand and eye coordination.  Yikes.  But he PASSED!  Nice job buddy. 

We are very excited for the upcoming weekend and the 5K that support Gigi's playhouse.  You can read more about the event here and we are praying for good weather.  Jack's fans have helped us raise over $2,000 for Gigi's and we are beyond thankful for all the love and support!  Gigi's provides free programs to all families and I am thankful for the community it has provided our family in the early days after Jack was born.   Recently, I have been in contact with them about being on the outreach committee, specifically the medical community.  I have been in conversations with them about Jack's baskets and I am excited to see how we can bridge the gap between medical professionals and families' experiences.

If you are free this Saturday, we would love to have you come out and celebrate with us!  Click "Join our Team" and choose Jogging for Jack.  You will need to create a username and password but after that it's pretty easy.

http://gigisplayhouse.donorpages.com/Race2014TwinCities5K/JoggingforJack/

GOLD

As many of you know, I am a physical education teacher and spring is always crazy with field days and end of the year events.  I had the unique opportunity to teach an all girl's class this year and I absolutely loved it.  In December I was out on a run and heard the song, Gold, by Britt Nicole.  It has been one of my favorite songs and always puts a hop in my step.

This song is such an encouragement to those that hear it.  It shares the message that whatever you have been told, YOU are worth more than GOLD.  Don't let anyone tell you that your not loved.  Don't let anyone tell you that your not enough.  Wow, a song that uplifts individuals!  Is that even possible in today's society?  I kept thinking of my girls and the issues they face everyday.  The voices in their own head, words that have cut deep, the belief that they have to measure up, the pressures of fitting in.  I asked them what they thought this song meant.  I emphasized that their worth does not come in what others think of them.

I wanted my girls to hear this song, to believe it, to live it.  A friend and I choreographed the dance that they could follow and I could incorporate it into the rhythms unit.  I then challenged them to share it at the end of the year assembly.  As the weeks approached we practiced this dance every class period.  I would see how the girls would express themselves in the dance moves and I then started to hear the words being sung.  I could see the belief in themselves was evolving.  We spray painted black shirts with gold spray pant and wore funky headbands.  As the day approached, they were beaming with excitement.

This past Friday they had the audience cheering at the final chord and many adults in tears.  To see this group of girls, each with a unique story, shared the message with our school community that each boy and girl is worth more than GOLD...it was beautiful. (check out their performance on the video below)

As I reflect on what each girl brought to this song and I hear this song being played in my own head, I remind myself that MY worth is more than gold.  My worth does not come in what others think of me.  Either does YOURS.

Honestly, when I think of the hard days in the past 14 months of Jack's life, it hasn't been because he has Down syndrome, it's when I think of how others view Jack's life.  I have felt like I have had to defend his life.  I felt the pressure to have to explain to others that his life is worth living (being that many parents terminate babies that are created like Jack).  When I refer to 'others', I mean people I don't even know, not the amazing family and friends we have.  Others.  Who are these others?  Why was I letting others steal the amazing joy I have experienced with their own ignorance?  My son's worth does not come in what others view his life to be.  My son's worth does not come in what he can and can not do.  He is worth more than GOLD.  My worth as a mother does not come in what I do and do not do. My worth is more than GOLD.

Wow, looks like this song made an impact on more than these girls.

For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago.

Ephesians 2:10

Dear Anna...

One of my closest friends' sister had a baby on Tuesday.  Although, she's not just my friend's sister, she has become a friend of mine and also happens to be kinda our neighbor, as a mile separates our homes.  Her name is Anna.  I have known her since she was in high school and have watched her go off to college, find the man she loves, watch her say goodbye and grieve her firstborn, and today I saw the beauty of her gaze on her newly born daughter, Kate.

When Anna was pregnant with Kate, they discovered that she has a heart defect which later led them to find out that Kate would be born with an extra special chromosome.  

In April I was asked to share a devotional at Anna's baby shower.  When reflecting on what I wanted to share with Anna and others at the shower...I thought of  the feelings a mother goes through when becoming a parent.  I asked Anna's mother, sister, and husband to also write 'Dear Anna' letters.   What does every mom need to hear?  Encouragement, belief, love, and support.  Here is my letter to her...

Dear Anna-

What a beautiful day to celebrate you and this precious baby.  Julie asked me a couple months ago if I could share a little devotional and this is what God wanted me and a few from your closest circle of support to share with you...

I can remember the first time I met you.  Your beautiful brown hair was in a pony-tail, you were sweating from hours of practice in the SRC, and you were determined to work hard.  You were a volleyball camper and I was one of the coaches.  Just finishing a drill, you came up to me and asked what you could improve on specifically.  You were introduced to me as Julie's sister, but I am thankful to say that since that year in 2000 we have grown into friends. 

With any new event in our lives, feelings of excitement, joy, anxiety, fear, and doubt can consume our thoughts.  Will I be able to do this?  How will I know if I am equipped? What if I fail?  When I became a mother three years ago, there were many days I doubted my ability to do this or that.  Sleep, wake, burp, change, bathe, feed, rock...all the things I was suppose to automatically know what to do.  Some days a productive day was simply a shower, or celebrating a dirty diaper, a date night, or just time to sit down.  Scripture teaches that God knows all our needs, concerns, and desires but still commands us not to worry. Think about that. Would He ever command something and not enable you to do it? Absolutely not! He wants your trust and—if You allow Him—will prove to you that worry is unnecessary.

 This room is filled with woman from many areas of your life, but the common thread to all of us is YOU!  You have made an impact on us in so many ways and today is a day to share with you that we care, love, and support you through this journey of motherhood.  

We have many similarities in our Type A, planner personalities, work ethics, and now an extra special chromosome will weave us even closer.   Although we will have unique journeys, I want you to know that you will find joy in the unexpected if you allow yourself to truly trust God. 

 Proverbs 16:9 

In her heart a woman makes her plans, but only God directs her steps.  

Anna, God knew what your journey would look like before your parents met in a small college in Iowa.  He knew the day you would fall in love with Paul, the day you would welcome Molly to the world, the day you would say good bye to her, the day you would find out you were pregnant again, and they day you would hear the unexpected news.  God does not make mistakes.  

You will be the best mommy to this precious girl.  When she steals your heart for the very first time, when she smiles at you, when she exceeds your expectations, you will soon discover your life was made for so much more.  You'll become her biggest fan, her biggest advocate, and the biggest encourager!  Your strength of being Molly's mom has prepared you for this baby girl.  

This baby girl will be as determined as her mama.  

Trust in the Lord with all your heart, lean not on your own understanding, in all your ways, acknowledge Him, and He will direct your path. 

 Proverbs 3:5-6

I love you Anna!  

When Anna and her husband came over the night they received the unexpected news, we sat around our kitchen table and talked through many of the initial fears we also had.  Each day Chris and I continued to pray for all of them.  We rejoice in knowing God gave them this fearfully and wonderfully made, perfect, precious little girl.  They will be the best parents for her and I can't wait to raise our children together.  We are in this together.

  

As they left that night and the tears started to change to smiles I boldly said..."Don't worry, it's already worked out...our Jack will marry your daughter and they can live in the apartment that we build onto our house."  

Jack and Kate.  

And yep...this mama is already praying for it.  :)  

All jokes aside, check out the video clip where these two love birds are getting hitched this summer.  Love it.  So...maybe it's not too far off.  

Sweethearts with Down Syndrome wed 30 years after meeting.  

Jogging for Jack 2014

As many of you know, we are big supporters of GiGi's Playhouse.

(Meeting Drew's family for the first time in person at Gigi's Playhouse.  We LOVE them and so grateful for their friendship!)

We are participating in their annual 5K event on June 7th, and I'm inviting you to become a member of our team! Jogging for Jack!  Last year we found out about the 5k two weeks before the event...and had a BLAST!  We would LOVE for you to join us this year!!

Whether you're planning to run, walk, or just enjoy the day: you can help us start raising funds for a very important cause.

The race is at Burnes Park and the address is:

                                                                    Burnes Park
                                         301 2nd Street N.

Hopkins, MN 55343

Just click the link below!  You can read about all the great programs at GiGi's Playhouse. When you're ready, please click the Join this Team button to sign-up. If you can't attend the event, please consider supporting our team with a donation on our page.

Team Name: Jogging for Jack

The homepage for Jogging for Jack is:

http://gigisplayhouse.donorpages.com/Race2014TwinCities5K/JoggingforJack

On behalf of the thousands of children and families served by GiGi's Playhouse: thank you so much for your support.

Also, we are making shirts for Jack's team and if you are interested in buying one you can email joggingforjack@gmail.com.  They are American Apparel shirts tri-blend track shirts (click on the sizes to see the website).  

Sizes available:
baby onesies: 3m-24m
infant: 3m-24m 
kids: 2 year, 4 year, 6 year
youth: 8 year, 10 year, 12 year
adult: small-2XL

They are $15 and the money can be sent to our home address.  Here is the logo that will be on the shirts:

We love you all and hope we can see you all there!  

Chris, Carissa, Luke, and Jack

                                               

PS...Guess who's getting geared up to cross the finish line first again?

COME JOIN US THIS YEAR!!

Oxygen

So I was hoping to post pictures of Luke & Jack's birthday parties but it looks like Jack partied too hard and we landed a recovery vacation at Children's hospital.

On Sunday evening, Jack woke up with an extremely high temperature.  We gave him some tylenol and this was the last night he slept in his crib.  He was starting to cough and every time he would, he would vomit.  On Monday he seemed to be very lethargic and tired.  He wouldn't really sleep unless I was holding him.  Later that afternoon I took him to the doctor and they tested him for the flu which came back negative.  He threw up again and his temp continually was around 103 throughout the day, peaking at 104.  His doctor was not working that day and the doctor we saw said he had an ear infection and potentially RSV.  She sent us home with a plan that included two neb treatments, twice a day, and an antibiotic.

On Tuesday, he seemed to be doing better until about 4:30 and then significantly declined.  His doctor asked that we go down to the ER to check his oxygen levels and if he was having signs of dehydration.  The Xray showed that he had pneumonia.  The doctor also came back saying he tested positive for RSV also.  That would explain why his temps were consistently high.  It is said that RSV runs it's course and it can be up to a week before the temperature comes down.  This has made him completely uncomfortable and he has refused to sleep unless we are holding him.

They released him from the ER because his oxygen levels were 97 which was an excellent number (100 is perfect).  We were told to follow up each day with our doctor which I did on Wednesday.  At that appointment he was at 95 and we went over his symptoms.  He ordered a test of his oxygen on Thursday morning and follow up x-ray.

Each evening was very long, slept in a chair or with him laying on my chest, elevated in bed.  We all are so tired.  We rolled out of bed and headed to the doctor where his oxygen levels were anywhere from low 90s down to 79.  He said that if we don't give him a neb treatment he would be sent via ambulance to the ER.  So off Jack and I went to downtown St. Paul, to Children's hospital.

In the ER the readings were very similar and they admitted him immediately.  His temp soared to 105 and it took the nurses 8 pokes before finding an vein that would work for his IV. That was not a highlight for Jack's mama.  Ugh.

Our hospital stay has been pretty good, a few frustrations, but most importantly our focus is on Jack's improvement.  He works much harder at what most of us take for granted...example: coughing.  When we have a cold, it's very easy for us to cough up mucus and clear our airway and it takes everything in Jack to clear all the 'junk' out which is effecting his ability to inhale oxygen.  His lungs are working diligently and with also having pneumonia along with RSV, this kid is a fighter.

He has decreased his dependence on oxygen support, occasionally going to room air (which is what we breathe at...which is 21%) and then sometimes needs to go back up to 25 or 30%.  I have realized I can't control when or what the next few days look like, which reminds me that all I need to do is pray for his strength and health and give him a little extra love!

I am very grateful to Chris' parents for taking care of Luke.  We have alternated going home for a few hours to spend some one on one time with him.  I can't tell you how much I love Luke and his  personality.  He is hilarious.  He lifted his binoculars and told me yesterday we were going on an adventure.  I cried when I had to leave and go back to the hospital.  I can't wait for us all to be home.

Jack has the hardest time at night.  They were waking him up to give him neb treatments that had a medicine in it that makes the him cough...which is not fun to any person that has been sleeping for a few hours.  He then is so irritated, he tries to rip out his oxygen, and has taken hours to get back to sleep.  I had a meltdown last night and just cried while I tried to calm him down.  The nurses we have had have been awesome and last night I would declare as an angel.  She rocked Jack to sleep and we got 7 hours of sleep!

What do our days look like in the hospital?  Well, Jack's radius is about a two foot cord, so he hasn't seen much of the hospital. ;)  The rooms are so nice, they just remodeled last winter and it really kind of feels like we are in a hotel.  Jack sits on his bed and plays with toys and we sing songs, play patty cake, and read books.  His appetite came back a little bit today and he was eating his favorite food, avocados!  It was such a beautiful day today and I had the pleasure of sharing a devotional at a soon-to-be mama of a precious girl, who also happens to have an extra special chromosome.  Jack can not wait to meet this baby girl.

Along with getting out today, I went for a run.  Children's is near one of the steepest hills in the cities, Grand Ave hill.  (Katie-it's nothing like what we did at the Nike Women's Marathon though ;))  I knew I was up for a challenge and since running is my free therapy, I thought, what the heck?  I'm lacking in sleep and exhausted but no hill's going to stop me!

As my lungs were burning after conquering that hill, all I could think about is the fact that my sweet precious boy was working that hard simply just to breathe.  How many times do I take for granted the simple tasks that many others work so hard to do?  

Delivering Jack's baskets to the hospital...1 year later

I didn't realize how excited I would be going back to the hospital one year after Jack's birth.  While we were driving today I realized that it was the exact same time and day of the week.  A Monday afternoon around 3 o'clock.  We even took the same route to get there...but instead of my uterus contracting...I felt like my heart was. :)

Creating Jack's baskets has been such a delight.  Thinking of what to put in the basket, hearing from friends and family that would like to contribute, getting packages at the front door filled with blankets made by friends with love, picking out an adorable outfit that will bring a smile to the family's faces when their precious baby is in it, and simply watching how God put the words to the letter on paper.  How do you put in to words what your child has taught you in this year?  Remembering the early feelings that were experienced, the grief, the fears...and then the joy.  The moments I did not expect, the fears that haven't come to fruition, the amazing ways people show their love, the silent moments when God gives you peace.  How do you fit that into half of an 8.5 X 11 piece of cardstock?

And then it came...

Dear parents, 

Hello, my name is Carissa and I would love to be one of the first people to congratulate you on your newest addition to your family.  Congratulations!  I also want you to know I have also experienced receiving unexpected news.  My husband and I welcomed our son, Jack, and were told at birth that he was born with an extra chromosome and has Down syndrome.  There were moments of confusion, grief of what we thought our lives would be like, and fear.  Please know that you are not alone in your feelings.  

Although this basket and words of encouragement might be hard to read at this moment, I hope that you find comfort in hearing from our family and friend that is also raising a child with Down syndrome.  I encourage you not to read (at this point) the outdated material that will give you generalized statistics and  concerns that are associated with Down syndrome.  I found comfort in hearing from actual families that are loving and living their lives with children with Down syndrome.  

So with that, I want to tell you a little about what Jack's life has already taught us...

He looks like his older brother, Luke.  He has his nose, his ears, and his amazing hair.  He is more similar to him than different.  He is rolling, sitting, playing, babbling, laughing, learning and exploring.  He has my husband's strong willed determination to accomplish tasks that many of us take for granted.  He can cuddle like no other and his eyes speak right to your soul.  His smile will make anyone's day turn around and his extra special chromosome has made relationships stronger and mended others.  His life has been a blessing to us and inspired others.  The unexpected news of him having Down syndrome was not a surprise to God, and it has been a year of trusting that He has a perfect plan for our family.  

Although there were many tears at the beginning, I would not change one thing about Jack.  He has been such a gift to our family.  He was fearfully and wonderfully made by God, just like your precious baby.  

My prayer for you is that you take the time to grieve the baby you thought, and love the baby you were given.  Your precious baby will steal your heart, will stitch it up with a much stronger, more beautiful thread that will be a much better masterpiece than you could have ever imagined yourself.  

Most of my hard days are when I allow myself to look too far down this journey and I am quickly reminded when I gaze upon his beautiful eyes that he just needs my love today.  God will sustain you and give you the strength and guidance you need to be the best parents for your child.  Trust Him and you will experience the unexpected...JOY!  

Blessings to you and your family.  Enjoy this basket, filled with love and support for you from our sweet Jack and those that love him.  

Love, 

Jack's family

“For you created my inmost being; you knit me together in my mother’s womb. I  praise you because I am fearfully and wonderfully made; your works are wonderful, I  know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth.“ Psalm 139:13-15

Letter to parents from us and Drew's family

Can you tell I am squeezing this nurse?  It's because of her we were able to make this happen.  I shared with her that because she was gracious to answer my questions, listen to me, have conversations and make arrangements, we are able to have Jack's baskets be a part of this hospital and make an impact on another family's experience.  She is also the person that got the ball rolling to have me come to speak to the staff.  I shared with her that because of her work and dedication, many families' lives will be changed!  

The angel in the nail salon.  Read about it here.  God, you are so good and you orchestrated this meeting.  Thank you Diane for loving my kids like your own.  Thank you for who you are in our story.  For congratulating us on our beautiful baby and for showing us God is ALWAYS with us.  Nail salon or hospital.  

Last night, Chris and I got a chance to pray over the baskets.  It was a chance for us to ask God to bless the families that will receive these.  He knows their circumstances, He knows their baby, and He knows their upcoming journey.  

It is my prayer and big dream that all children beautifully created with an extra special chromosome in the Twin Cities (and maybe even beyond ;)) could receive a loving welcome from one of Jack's baskets.  Every child should be celebrated and welcomed into the world and it's sad to me that many families are never congratulated and some are even treated differently or avoided because of a Down syndrome diagnosis.  With that, I am excited to share that I will be speaking to the hospital staff on September 8th, giving a family perspective on receiving unexpected news.  There is possibly two other hospitals that are interested in having me come to speak to their staff.  Please pray with me that this could happen.

If you are interested in giving a tax-deductible donation to Jack's baskets and getting them in the hospitals, please click the yellow DONATE button at the bottom of the page. We can not thank you enough for your support!

*****Since the writing of this initial blog post, Jack's Baskets are currently available to all birth centers int the Twin Cities and sent across the United States.  We follow HIPPA privacy laws and have ways to request baskets.  You can find more information on our Facebook page, Jack's Baskets.  Stay tuned for Jack's Basket official webpage!********

My doctor also loved the idea of Jack's basket and welcomed me bringing one to the clinic to give to a family that will receive a diagnosis during pregnancy.  Wow...what if we could impact those families?  The amount of babies that could make it to birth...as the reality is that aprox 90% of babies diagnosed in utero are terminated.  

We are excited to celebrate both Jack (25th) and Luke's (26th) birthdays this week!  We love them both so much and our hearts are filled with joy and love.  

http://vimeo.com/66071538 

That's right Jack, Mama said you would change the world.   

Words. Helpful or Hurtful.

My mama always told me that if I didn't have anything nice to say, don't say it at all.  I will admit that at times in my life, my tongue has been like a sword.  Sharp and hurtful.  

Words.  They carry so much power.  They can encourage and discourage.  They can bring comfort and they can tear apart.  They can spread truth and also lies.  Words, are helpful or hurtful.  

This month has been one of reflection.  One that has brought many tears...of the highs and lows of the past year.  Remembering how the words of Jack's diagnosis were given...to the amazing support we received when we introduced him to the world.  Your comments and encouragement sustained us.  

Being that one of my love languages is words of affirmation, I CAN NOT TELL YOU HOW MUCH YOUR ENCOURAGEMENT MEANS TO US.  Do you know that there were nights that I stayed up late and reread all the comments that you shared with me...believing that we could do this...and do it well!? Sometimes those comments were what helped me get through the first few hours.  God used your comments to help me see that we were well equipped for doing the best we could for our family.  Some of the early emotions included doubt...and YOUR words and presence in our lives have made a huge, huge, huge difference.  Thank you.   

Some people make cutting remarks, but the words of the wise bring healing.  

Proverb 12:18

Thank you for not saying, "I'm sorry."  We are thankful that only two people did...and an overwhelming amount of you said, "Congratulations."  Saying that you are sorry translates to me that you are sorry that Jack is the way that he is.  That you are sad about how my son was fearfully and wonderfully made by God.  God does NOT make mistakes.  Guess what?  I wouldn't change anything about Jack and there is nothing to be sorry about.  

Helpful or Hurtful

Lastly, I want to share something with you that hurt very deeply.  

A few weeks after Jack was born, I became aware that two middle schoolers that I know were making fun of a classmate and her brother, who has Down syndrome.  These two were not just saying hurtful words, but they were also adding damaging body gestures.  This sibling was in tears.  My heart was breaking hearing the details.  These two students were trying to win the attention of their classmates by their immaturity and complete lack of thought for anyone besides themselves.  They learned this behavior somewhere.  They learned that it's okay to call someone a retard and think that it doesn't matter.  That word has always infuriated me.  What also infuriated me was how the incident was initially handled...no punitive consequence for these students until someone spoke up and asked why people with disabilities are constantly being discriminated..as if it's okay.  Why are these hurtful words accepted as common language among kids.  Why is the r-word still being used as if it doesn't hurt.  Just like the n-word hurts so many, especially the African American population.  The word is used so casually and people do not understand the impact that it has.  

It's hurtful...not helpful in conversations.  It brings no value to you or the person you are talking to.  The times I have heard it used is to put someone down and make the person feel inferior to them.  

Please stop saying it.  

If someone says it in conversation, please ask them not to.  If you have children, please teach them why it is so hurtful to my son, to me, my family, my friends with children with Ds, and people with developmental disabilities.  

Tomorrow, March 5th, is the 6th annual campaign to spread awareness to stop the r-word.  Spread the word to end the word.  Please consider making a commitment to end the word.  

Don’t Use Foul Or Abusive Language. Let Everything You Say Be Good And Helpful, So That Your Words Will Be An Encouragement To Those 

Who Hear Them.

Ephesians 4:29 NLT

What if we used our words to encourage others, to instill belief in them, to help them reach their full potential?  

Your words are either helpful or hurtful.  You decide.