A Trip to the ER

Jen,

Today I write to you with no encouraging words but just to let you know how I am doing. I am exhausted and deflated. I was hoping my last post would detail the end of the hoopla of life hitting me but, no, it wasn't. I hadn't left the house from this past Thursday until Monday night. Here's why...

We left for Texas the Friday before Thanksgiving and came back that Tuesday. The trip was good, it was just all the traveling. Four planes, three kids, 1000 suitcases (ok so it felt like 1000), weird naps, 1,000 miles of walking (I might not be exaggerating on this one) random food, and the list goes one. My kids did amazing! I don't think there was one meltdown. They love being with their cousins so their favorite stuffed animal could be on fire and they'd be fine. 

Cousins at Sea World!

Wednesday, our first full day home, was going to be a day of rest. June threw up most of the day. We put sheets down randomly on furniture and the rug because you never knew when it was going to happen. The kid never even whimpered! Thanksgiving was a throw-up-free day but June kept complaining about her mouth hurting and started screaming when she ate. Since she is not a complainer I knew it was bad. I took her to the doctor who couldn't find anything wrong. We were waiting for a nurse to come in with June facing me when she got this look in her eye and she puked all over me. From the top of my shirt to the bottom of my pants. The nurse was taking a really long time so I started to yell "Help!" Of course, I didn't want to be too dramatic so I started off just yelling "Excuse me, I need help!" When no one came I just started yelling loudly! The doctor came running and saw me. I didn't want to stand up because I didn't want to get it everywhere. UGH! GROSS!

We laid low on Friday when Friday evening Ada threw up. She had nothing left to give and dry heaved until 1:30am. It was so awful. Saturday she barely ate. I kept her hydrated but by Sunday morning I was growing concerned. Everyone was stir crazy so after two days of telling the girls we couldn't go cut the Christmas tree down Greg decided to take the two older girls and I stayed home with Ada. She would not drink anything. Ada would back bend and shove the bottle away. I finally called the doctor and since she hadn't peed in over 24 hours they told me to take her to the ER.

Searching for the perfect tree! (Photo by Greg Ehlert)

I'll spare you all the details of the ER (i.e. moaning man yelling profanities and policeman delaying an arrest) but let's just say four and half hours and 5 nurses trying to get an IV into Ada wasn't a trip to Candyland. At one point four nurses were each holding a limb tapping away at Ada's veins to find one. They failed four times and then called the pediatric nurse from another floor who tried and failed as well. We then started to give her Pedialyte and she actually took some. The took her blood and found she was dehydrated and her blood sugar was low. 

Ada sleeping on me in the ER.

As of Monday she still was having a hard time drinking anything. I am starting to use the syringe like the doctor suggested to get some liquid in her. She has peed some which is good. Please pray for Ada and pray for me in caring for everything. One moment I am great and the next moment I wonder how we are going to do it. Thank God for Greg who is a true partner!

Ann
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Ann,

I want to push the pause button for you! This is crazy. As if vacation doesn't throw off a family enough, now you have sickies.

Many prayers for Ada and I'm glad to hear that as of Tuesday morning she's eating larger amounts. It's so heartbreaking to have a sick child, especially a baby. Sweet girl.

Love and prayers,

Jen

How To Tell Your Children About Down Syndrome

Jen,

Recently,a friend asked me how to explain to their child what is Down syndrome. I told her I wasn't exactly sure how to explain it because it's hard for me to wrap my brain around it! It's hard to explain a syndrome that used to limit people and now because of Early Intervention and Medication Intervention people are living two to three times longer than they did before, AND are capable of doing so much more than they ever could before. It's hard to explain a syndrome that talks about an extra chromosome. Um, yeah, like I really get what I chromosome is!

I've recently seen two videos I thought would be good to share. This one you can share with your kids.

I love this next video because it shows great diversity. This you can share with your kids, too. Don't worry there's nothing risky about it! They just might think it's a bit boring.

Our family is constantly learning new things about Down syndrome. For Catina and June, Down syndrome will not be unusual to them. I also believe that children are being taught younger and younger about acceptance of all types of people. It's our job as a parent to show acceptance when we encounter someone who is different than ourselves, and to ask questions and or find out more information to help our kids have a better understanding of those around them. This can help them know how to relate in a positive way.

As our lives progress I'm sure we will learn more about Down syndrome and better ways to explain to others what it means. When we do, I'll be sure to share!

Ann

P.S. To our friends who are "listening" in. This week we have received three requests from women who are waiting for their future children. Please remember to keep those who are trying to get pregnant or waiting for a child in your prayers. It's much appreciated!
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Ann,

Thanks for the videos!

I wonder if I know how your friend feels about telling her child about Down syndrome. My boys are obsessed with Ada and think (or hope!) every baby they see is her. I know a day will come when I'll need to explain what's different about her, and I feel like in that moment I have the chance to really set a standard for the way they accept others for the rest of their lives and I want to do it right. At the same time, I realize "that moment" has really already happened! I just have to keep those lines of communication open like you're saying.

And many prayers for our friends who are waiting. My heart aches for them and their journey.

Jen

Oh My Little Ada!

Jen,

Most days I don't dwell on Ada having Down syndrome. I do think about it every day because as a mom I really have to. I think about if I have all her doctor's appointments scheduled; I think about whether or not she's had enough tummy and sitting time each day, if she's held a spoon, if she's tried picking up puffs by herself, etc. Now I do believe a lot of moms who have typical children think about these same things, but I'm thinking about them because I want Ada to reach her highest potential alongside Down syndrome.

Ada is now sitting up and clapping. She seems to be raising her arms when we say "How big is Ada?" At times I wonder if that is an accident but I have to believe she really does get it. She loves to be bounced up and down and will laugh like crazy when I do it. She's eating baby food really well and has started to eat puffs and soft bread. She is constantly up on all fours rocking like she is getting ready to crawl.

So hard to get this girl to smile for the camera because she's obsessed with grabbing it and observing!

Last week I took her for her 9 month appointment and she is a little over 13 pounds. She's still in 3-6 month clothing and can wear 6 months but it's a little baggy on her. It actually works best to wear 3-6 month pants and 6 month tops. You know how much I hate changing bins for clothing the first year of life so most of the time she just either has to go baggy or a bit short. Poor thing!

Her doctor is so pleased with how she is doing. He said she is on the curve in every way for a typical child. This is good news right? But somehow it feels strange to be excited about that. I mean, wonder if she wasn't? She'd still be Ada. We'd still love her. It's in these moments I get confused as to how I should be hoping. Do you hope for the smartest physically fit Down syndrome child who can compete with some typical children? It just seems weird.

Sitting up like a big girl in her crib.

 At the Down syndrome walk this became evident to me. People send me Down syndrome articles and videos all the time. I totally appreciate them. It's great to see. I remember people sending me, and at times still do, all the videos about children who were deaf and could speak well or who turned out to be great musicians. Great for those children and great to know about the different potentials children with these disabilities can reach! At the same time I wonder if my child can't do those things will that be disappointing? I really don't want to be disappointed in them especially if it's not their fault.

It's this weird conflicting emotion that goes on inside of me. When these moments come I remind myself that I just want each of my girls to be the best they can be. To reach their full potential and not the full potential of what their disability is.

Another weird conflicting emotion races through me when someone sends me a video or article about a person who has one of my children's disabilities and says "Wow, can you believe they can do this?" I am surprised at their unbelief and sad that they didn't realize that, yes, these children can do these things. They do them all the time. 

June helping Ada in therapy.

I feel burdened at times of having to be the advocate for the deaf or those with Down syndrome. I don't really want to be the educator but the Lord has placed me in this position and continues to give me in Grace and Patience to share what these children can do and be. Even in this burden, I can become excited about it and think about my future. Will I be someone who leads parents who have children with these disabilities? Will I be able to run an organization that advocates for them? Will I be able to come alongside a parent who is having a hard time dealing with their child's disability?

A few years ago I thought that when my children were a bit older I'd finish my Masters in Counseling. Now I am realizing why I wasn't able to finish that degree and wonder what He has in store for me. The Lord placed these three girls in my home to not only give me the opportunity with Greg to love and raise them, but to change me and put me in a place that will be able to help those around me. Isn't that amazing?!

Thanks, again, for letting me express honestly!

Ann
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Ann,

I love this statement:

When these moments come I remind myself that I just want each of my girls to be the best they can be. To reach their full potential....

I know it's coming from a bit of a different place when your kids have a disability, but it's such a great mantra for all of us parents. Just putting on the blinders to everyone else and wanting them to be the most loving, smartest, joyful version of themselves.

Thanks for making us think!

Jen



 

A Little Walk For A Big Cause

Jen,

This past Saturday we went on our first Buddy Walk. Buddy Walks are held all around the country to celebrate and raise money for those who have Down syndrome. We decided not to get all crazy big this year for a variety of reasons. Time is always a factor but also because we weren't really sure what it would be like. Would it be fun for those coming? Will it be surprisingly emotional? Would it be worth having all our friends there?

Catina with her face painted!

Ada pooped out before we even walked.

So far I've participated in two other events surrounding Down syndrome. The first one was going to see Kelle Hampton at a book signing at a landscape nursery. I went by myself with Ada and fortunately ran into a friend. It felt odd and weird and I struggled with a variety of emotions while I was there. In the back of my mind I was concerned that this event would bring on those same emotions so it was nice to have a few close friends and family go with us rather than a larger group so if need be I could process with them while I was there.

You've got to love a good moustache.

Greg and I in the middle!

Our friends in family with their sombreros!

The event was so much fun! Catina can't wait to go back to the Down syndrome party next year. There was face and hair painting, animals to pet, houses to bounce in, walls to climb, trains to ride, music dance to, good food to eat and so much more. People created teams and dressed up for the person they were walking for. We chose to be Ada's Amigos mainly because Angels were already taken but I'm very glad it turned out that way. We were able to dress up and shake our moroccas while we walked.

 

Catina, June and their friend Molly on the train.

My Dad being his usual goofball self.

Before the walk began there was a ceremony announcing who had raised the most money and various children with Down syndrome lead us in singing, the national anthem and some poems. It was great to see people of all ages with Down syndrome. Right now it seems easy to have a baby with Down syndrome and I hope it continues to just be a part of life, but looking into the future it can sometimes look a bit daunting.

My friend Kate with her son, Nathan, talking to Darth Vader.

Our friend Chuck with Darth Vader.

This is my favorite photo of that day. Chuck with Chewbacca. SERIOUSLY?! All for Ada! : )

This month is National Down syndrome month so I hope to take some more time to share more about Ada. Not only to help those who have children with Down syndrome, but to help all families become more aware about this amazing part of our population. I also want to share some more of the emotions I have had for those who may have felt the same way I did, so we don't have to feel alone.

I'm really looking forward to next year's walk and sharing this time with more people!

Ann

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Ann,

I'm so glad you were the Amigos, too! So much more fun that a bunch of sweet angels.

Can't wait to see what kind of fun everyone will have next year! I'm so thankful it turned out to be a great day for everyone, including June and Catina who will look forward to this big party every year!

Jen

Blah, Blah, Blah, Even Though I Know You Want To Know

Jen,

A lot has happened these past two weeks so there is much to share about the girls.

Catina continues to LOVE kindergarten and is disappointed on Saturdays when she is not going. We miss her, though, and June asks for her often throughout the day.

Really the only kink in this whole kindergarten thing is that Catina doesn't like to go to the bathroom in public so she holds it the ENTIRE day. Many of us, including Catina's teacher, are trying to encourage her to give it a try. Her teacher has been so amazing in standing outside the door while she tries but she still hasn't gone. My fear is infection or an accident so hoping this is resolved soon.

A lot is going on with June that is exciting as well. It looks like she will be graduating to a new speech therapy regimine where she will attend a parent tot class with me once a week and then go to a speech therapist on our her own for a 25 minute session. I really think June will stretch and grow as we proceed this way. I'm also really hoping that all works out and her speech therapy can be right after the parent tot class so we can free up another morning. Right now we only have one morning a week free and this really limits our time seeing friends or running errands. For the next few weeks June will be tested for her receptive and verbal language as well as her articulation.

Catina's picture day outfit and June's first day of school get-up.

Today we switched ear molds on June's hearing aids. We used to go to the doctor's office to have those attached for us but our audiologist was nice enough to show me how to do it to save the extra trip. The girls always love playing with the old ear molds and pretending they are audiologists. I've kept all of them from the tiniest until now. It's amazing to see how much ears grow!

I'm waiting for June to want a different color but she doesn't really seem to care so I always pick pink glitter.

Ada had her eye appointment. They told me it would take up to 2 1/2 hours but we were out in 1! She doesn't need glasses right now and although she has an astigmatism, the doctor said that he wouldn't really put her in glasses until she was ready and willing to wear them. Her vision was good enough to not need them. Yay for not having to keep track of glasses!

Ada sleeping in the waiting room as she waits for her eyes to dilate.

I am so grateful for how healthy Ada is. Whenever we would pray for Ada in my womb I never prayed that she wouldn't have Down syndrome but always prayed she'd be healthy. I don't know why the Lord has granted my request but I thank Him and praise Him for doing it!

Ada is now sitting up for moments at a time on her own. She rolls every which way to get herself places and has begun to rock on all fours. Some nights we don't sleep as well because Ada likes to jibber jabber to herself. She's not upset, just talking! I think her and Catina will have a lot in common.

Children's hospital tunnel to the parking garage.

Last but not least I had to share that after seeing my hair look like Farah Fawcett I decided to get bangs and color my hair my red annual fall color. Some of the young guys Greg spends time with call me the hipster Mom now and I'll gladly accept the title minus the vegan food.

Of course when my hair dresser does my hair it looks much straighter but this is the reality of the day to day.

Well, blah, blah, blah with the update but I know you and others like to hear what is going on. In a couple of weeks we will be walking our first Buddy Walk. It's a walk for people with Down syndrome. If any local friends are interested in walking with us you can join our team here. Our team is called Ada's Amigos and we plan to dress up. You can also give money to our walk here. We really haven't told the world about the walk only because it's our first one and we don't want people to feel the pressure to come. On the other hand, I'd hate to have people find out after and wished they were invited.

I'll leave you with this fun giggling video of Ada.

Ann

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Ann,

Thanks for the updates! As often as we talk I didn't know most of this. Guess that proves we don't really get to share a whole lot in our 2-minute phone calls with kids screaming in the background!

Jen

Jen

Ada Makes Three!

Jen,

A few weeks ago Ada had tubes put in her ears. She had some fluid at her first ENT appointment and when they did a hearing test she wasn't hearing.

The day of the surgery Ada went 21 hours with no food, between needing an empty stomach for surgery and not giving her food other than sugar water once she woke up. The surgery went well and while she was under they did an ABR (Auditory Brain Response) test. June had this when she was 6 weeks old. Her hearing came back normal which was a sigh of relief because it's one less thing to be concerned with. Keeping hearing aids in a little one has been a challenge, and from what I hear it's harder keeping them in the ears of a child with Down syndrome because the cartilage in their ears is a little floppier.

"But Daddy, I'm so hungry and they are making me wear this huge gown!"

Ada rolls over on purpose all the time now and is trying to get up on her knees to crawl. She can sit up for brief moments and enjoys playing in her Bumbo with a tray. When she is hungry she smacks her lips. We are starting to sign with her and we play the little game "How big is Ada?" and lift her arms up high. Now she is starting to bring her arms to her face when we say this and she grins from ear to ear. In September she will have a 2 1/2 hour eye appointment to figure out what her vision is like.

Ada's sisters teaching her fine motor skils.

I can't remember if I told you about her thyroid test. The poor thing had to have blood drawn from her arm. Fortunately, the test was negative and she doesn't need to be on meds at this time. Speaking of not remembering, I've been slipping in this area. By the time my first two girls were six months old I felt like I was getting out of the fog and things were becoming easier. That has not been the case this time. Sometimes I wonder how I am going to get everything done and, oh, sometimes I remember I really don't have to get everything done! I've had friends tell me they would meet me somewhere and later I'll realize I thought it was a dream and barely make it to the destination.

Sisters playing princess in their castle tent.

I feel like some days I can keep up with the steam roller but others days it's brushing up against my back side and I'm going to be squashed. I'm hoping this Fall when things are a bit more scheduled my mind and body will keep up better. How do we fit it all in? Or what don't we fit in?

Catina and June holding hands while swinging.

I'm really excited about what the Lord is teaching me but now I need to listen and find out how I'm suppose to live life in this new way and turn from my old ways. Incorporating this new life and keeping up with three children seems complicated without serious boundaries. My biggest fear in all of this is for friends to not understand and think I am brushing them off or not wanting to be around them. I wonder if others deal with this same issue and I wonder what they do about it.

Pray for me!

Ann

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Ann,

Thanks for your honesty. I'm so glad we can talk about this even in a season where we're grasping for time to connect over the phone. Even with friends as close as us it's easy to just get bits and pieces of each others' lives and really have no clue how they're doing or feeling. Thanks for sharing, and know that I'm interceding!

Jen

I Heart Ada

Jen,

Today we went to the hospital to have Ada's follow up echocardiogram. This is a day I've been anticipating since the day we found out that she had PDA. I remember being so shocked because the fetal echocardiogram was perfect and was surprised that something could be wrong. What is PDA?

Patent ductus arteriosus (PDA) is a heart problem that affects some babies soon after birth. In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. These arteries are the aorta and the pulmonary artery.

Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of fetal blood circulation. Within minutes or up to a few days after birth, the ductus arteriosus closes. This change is normal in newborns.

In some babies, however, the ductus arteriosus remains open (patent). The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries. 

- National Heart Lung and Blood Institute

We got to the hospital early and it turned out to be a whole hour early due to a mix up with appointment times. We decided to hang out in the courtyard where every five minutes a hospital employee walked by to ooh and ahh over Ada. Ada smiled for some but most of them got the "who the heck are you?" look. Ada can be very shy and has even started to hide her face a bit if she isn't sure of you. 

I'm six months old! Photo taken by Ann.

The whole time we waited, and as we walked in for her appointment for the second time this morning, I felt nothing. I was prepared in my mind for the worst and had even postponed putting in ear tubes thinking there was a chance of a heart surgery coming up. At the same time I really felt like she was fine and this appointment would be routine. I know it sounds silly to feel both but I really did!

Right before she was stripped down. Photo taken by her Daddy, Greg.

We stripped Ada down to be weighed and she is now a whopping 12 pounds 7 ounces! After taking her blood pressure and oxygen (which was perfect) they brought us into another room to start the echocardiogram. The procedure is a lot like an ultrasound with the addition of an EKG. The technician can't tell you anything, so you wait out the test wondering what in the world you just saw on the screen that looked like valves in the heart. Kind of. The test was about 15 minutes long and after 5 minutes Ada decided to let everyone know that she really didn't like lying still while someone rubbed a knobby thing with wires connected to it near her face, so she started to open her mouth and try to suck on it while fussing.

Ada connected to EKG. Photo take by Daddy, Greg.

Dr. Humes, the cardiologist, walked in and I immediately felt good. He is a very kind man and has the most amazing bedside manner. He was the same doctor that conducted Ada's fetal echocardiogram. He reviewed the pictures and asked us to meet him in another room where he then listened to her heart. After he was done and I was dressing Ada, he told us everything looked great and her heart is good! Tears immediately started flowing and I felt so much relief. My little baby is ok!

A few weeks ago we went to the ENT and it looks like Ada will need ear tubes, which seem like no big deal next to HEART SURGERY! While Ada is under they will conduct an ABR which is the most accurate hearing test. This was done to June when she was 6 weeks old. I'd been concerned before Ada was born and wanted her to have an ABR. Since June passed the newborn screening test in one ear and later it was found to have a mild loss in that ear, the ABR was the only thing that detected her loss. Since both Greg and I have a gene that gives our children a 1 in 4 chance of being deaf I am glad we will have this test as Ada's baseline for future hearing tests.

We are meeting so many new people who have Down syndrome or have children that do and it has been so exciting. Everyone has been amazing and we look forward to the new friendships Ada is bringing to our life. Hopefully I will take the time soon to share some of those stories with you.

Next week we will see you in the U.P., eh? CAN'T WAIT!

Ann

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Ann,

The relief I felt when I got this news is NOTHING compared to how you guys must have felt! I know you would have been fine if surgery was needed, but there's no doubt this is the best news! So many praises for Ada's health and her impact!

Are the exclamation points too much?! Too bad!

Jen

I'm Not Expecting

Jen,

This first week and a half engaging in healthier habits has been good. Good but different than I thought it would be. I thought I'd be having a hard time keeping up with a better food plan but instead I have had a hard time acknowledging some emotions and thoughts I didn't realize I had.

Ever since my 20-week ultrasound with Ada I have made comments that this would be the last child that came from this body. Most people took this to mean I had a very difficult pregnancy. The pregnancy itself was not anything different than most people experience, it was the doctor's appointments, the unknown of whether she had Down syndrome and the pressure I felt to give people answers. I wasn't even sure what I meant when I made this comment until this week.

At this point I may have reached my capacity on the children I raise well, but more than that I fear that if this body produced another child it would come into this world with another disability. I love my children like crazy and I believe I have accepted their bodies even if they are different than the typical child. Of course this is not without concern for their future and the way society may accept them. My prayer always is for a loving community to surround them, that they would be confident in themselves to be who they are, and strong enough to advocate for themselves.

Ada, 5 1/2 months

When struggling with infertility I often struggled with the feelings of inadequacy. Now in my brain that does not make any sense. I had little control over my body and couldn't control if it would or would not get pregnant, but deep in my heart there was a sense and wondering if somehow it was all my fault. I wanted to give my husband, Greg, children and now again I am struggling with feeling that I am stopping the process of giving him one more. I am feeling this same way about Down syndrome.

I wouldn't want Ada to not have Down syndrome because, well, Ada wouldn't be Ada anymore, and I truly am looking forward to the continued change in our family's hearts as we realize that we don't need to look or be a certain way. That we just need to embrace who we are and accept the love of our Creator. At the same time I don't like that she will struggle with sitting up, eating, walking, talking, etc. I don't want it to be hard for her! I can also feel this same heaviness for June having to wear hearing aids. To me, I forget they are even there and I think she looks bare without them but I am sure not all of society will see her like I do.

Catina and June selling lemonade

I am grieving the potential of another child because at times I wonder if maybe we'd welcome one more if we didn't have the extra time put into exercises, therapies and doctor's appointments. At the same time it's been nice to think about gaining my own body back postpartum, to eat and be who I should be physically to stay healthier for myself and for my family. 

It's also been nice to think these are my girls and let's just focus on them for now! For so long we were trying to conceive that it's become a natural part of who I am. Even with my first periods after Ada I had this pang of sadness that I wasn't pregnant, and then would remember I had a very young baby. My mind had been conditioned to grieve each month and now I can release that and be grateful for the THREE children I have! Three, Jen, can you believe it?

Sleepy Ada

This is just the beginning of what I am embracing and understanding. Greg is so loving and reassuring that we are in this together and he is grateful for our lives now. This is helpful. Please pray for me as I sift through these thoughts and emotions and pray that I continue to learn more about what it means to be loved by Jesus.

Ann

________________

Ann,

Thanks for your honesty and a peak inside your deepest thoughts.

I remember having conversations about whether or not we'll know when we're "done" having kids (dreaming that we'd actually have the choice!), and I know we never considered what you're experiencing.

Praise God for a wise and loving husband, and three precious girlies. I do pray that you would embrace Christ's love and reassurance while you journey.

Makes me think of this beautiful song:

Jen

Rollin', Rollin', Rollin'

Jen,

Well, Ada is about the same size as your baby, Hayden, when he was born! Last week at the doctor she weighed 10 pounds, 7 oz. Gotta love my little peanut!

Taking a nap on the lawn

She is laughing and smiling so much now. She thinks I am especially funny which melts my heart. When I stare at her I get this funny feeling in my chest and it makes me want to cry. She is so darn beautiful!

Ada playing with her sister, Catina

Ada now loves to roll from her belly to her back both ways! She is almost rolling from her back to her front but hasn't quite gotten there yet. Catina likes to lightly tap her when she does this and she starts a rollin'. I love to see the shocked look on her face when she realizes what has happened. She is also in this phase where she lifts her hand up and stares at it like its from another planet. She is grabbing for toys and has learned to pull her cow friend which plays music.

Ada watching her sisters.

At the end of June she has her heart check-up. We are praying her valve has closed and that she will not need heart surgery. When I think of this possibility I get all panicky, though I'm trying to stay focused and believe that whatever happens will be o.k. Ultimately, we are praying for healing so we are asking others to believe with us for that healing. In June, we will also be checking her thyroid and visiting an ENT. We are definitely looking forward to summer around here so our schedule can be more on the free side!

Sunday we are dedicating Ada to the Lord. Looking forward to you meeting our Ada then!

Ann

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Ann,

Part of me feels like I have already met her! I am beyond excited to see all of you, but especially our Ada.

Believing that God can certainly heal Ada's little heart!

Jen

Congratulations, your child has Down syndrome!

Jen,

Lately I've been wondering if it's strange that I am not more sad about Ada's Down syndrome. I have heard a few stories where people who have children with DS have come up to a new parent of a baby with DS and congratulated them on the DS rather than the child. I'm sure they are doing this because they know how special the experience is but it is a bit odd.

I get it though. I'm excited about this journey we are on with Ada. Of course there are times when I wonder what it would be like to have no "special needs" in our house, but then I look at my "normal" child and remember that we all have special needs. I think often of where Lord is taking us: What will we learn? Where will he have me in ten years because of this life changing experience?

We wouldn't choose cancer or a divorce, but when it brings a person closer to Christ you can almost be glad. If someone else has the chance at the same path as you because of something that was put in your lives, they too will have the opportunity to grow closer to Jesus. I feel this same way about Down syndrome or even deafness. 

My views are changing as to how I view disabilities. Now I see them as blessings and I might not have before. I appreciate being among them rather than viewing it from the outside. I know I will appreciate Life more because of this journey and will hopefully long for and understand heaven a bit more while I'm here on earth.

On World Down Syndrome Awareness Day, March 21st, I saw this video. 

It blew me away how these children were from all over the world. How could they be a mistake? They permeated every ethnicity and it was beautiful. Their "simple minds" can teach us everywhere to live in the present and to love. I'm looking forward to learning more about this love people say they feel coming from people with DS.

Catina is very emotional, but when she is really sad about something she lays her head near Ada and suddenly becomes very calm. Her baby sister is already teaching her how to go to a calm place where things are simpler and where she feels loved.

May we embrace the challenges in our lives so that we can grow closer to Jesus, that we would learn to live more like Him. 

Ann

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Ann,

Amen!

So many thoughts, but mostly gratitude for your great attitude and also for keeping it real.

Jen

Normal?

Jen,

Earlier this month our family was sitting down for dinner and I was telling Greg about Ada’s therapy session from that afternoon. Catina was listening and said, “I’m the only normal one, right?” I stopped myself from laughing out loud because really, who is normal? I asked her why she thought she was the only normal one and she told us because no one comes to help her at the house like they do for Ada and June. We talked with her about how some day she may need help with things as well, but for now we are grateful for her health and abilities that God has given her.

 

One afternoon during quiet time I was watching this great episode of Glee where one of the main characters who is a cheerleader and happens to have Down syndrome was the highlight of the show. Catina has overheard us talk about Down syndrome and she has asked a few questions about it, so when she walked up to the screen I pointed out the teen who had DS. I was holding Ada at the time and after she looked at the girl on the screen she looked at Ada, started rubbing Ada’s head, and in her grown up voice said “Well, aren’t you just our cutie?!”

Ada with her second cousin Rebekah (photo take by Judy Hewett)

Recently a children’s book was recommended to us by Greg’s Aunt Judy, who also has a daughter with Down syndrome. Its called “We could paint the Octopus Red!” It’s a great book about how this little girl is waiting for her little brother to be born and she wants to know what kinds of things she can do with her little brother and she comes up with a fun list of things to do with him when he is a bit older. The day the brother is born the family finds out he has Down syndrome. Of course the little girl wants to know what that means and if he'll still be able to do all the fun things on the list. Soon she finds out he'll be able to do everything she dreams about, so she continues to be excited that he is coming home. TEARS!

We continue to learn more about what Down syndrome means, but for now we realize we have this cute little baby who likes to smile. The first few weeks Ada was home I thought about it almost every minute but now I only think about it a couple of times a day in a matter of fact way. I’d say in the same way I do about June’s hearing loss or Catina going to kindergarten next fall. SERIOUSLY, can you believe Catina will be in kindergarten?!

Ann

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Ann,

I really love your honesty.

Most of us have no idea what it's like to have a child with a special need. I remember asking if you ever woke up and thought it was all a dream--not so much that it's all so horrible, it's just more to juggle and think about than most of us will ever have to consider. But we get a glimpse of it through your eyes, and for that I'm grateful.

(And regarding kindergarten, I'm just glad you're going through it first!)

Jen