Special Needs Spotlight || Ruby

Nathan and I were married in 2005 and we wanted kids right away. I was 26 and wanted to be a young mom! So our 4 kids are all 2ish years apart. Landon is almost 9, Olivia is 7, Henry is 4 and Ruby is 2.  We never expected in that planning to have a child with special needs! Talk about a surprise and talk about busy! Life gets a little hectic sometimes and most nights Nathan and I crash, sometimes without much communication, except for spouting out what the kids needs are or who has to be where and when. Landon plays baseball, loves reading, video games, knows more about animals/nature and more random facts that I can ever imagine, has a crazy good memory and craves one on one time with us. Olivia loves gymnastics, American Girl dolls and matching anything with Ruby. Henry is hilarious and pretty much tells us how life should be lived, loves legos and eating away from home. Ruby has stumped us all. She is unpredictable, even to doctors and the happiest baby EVER. She’s completely adored by all of us and we’d do anything for her! You can check out our blog (that hasn’t been updated in a LONG while) www.meetrubyv.blogspot.com or follow along on my Instagram account, cferb,that I update often with the usual, daily stuff.

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Miggy: Courtney thank you so much for being here today and for sharing your sweet Ruby and your special needs journey with us. Lets start at the beginning, can you take me back to the day you knew Ruby would have special needs?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Courtney: When Ruby was born, we had no idea anything was wrong.  Her pregnancy was just like my others, except that as soon as she was born, I heard, “any second she’ll start crying….annnyyy second” and then they whisked her away. My head popped up to them bagging her to get her to breathe. The dr. just kept telling me she was in good hands. I was scared to death, but they then cleaned her off and brought her to me and everything was fine. She had a hoarse little cry that was attributed to her difficult delivery, and she was VERY content. I KNEW something wasn’t right, but I ignored it at first. Then my cousin came to visit and as I was saying how great everything was, but I knew in my head it wasn’t. I started to cry when I thought about going home, but didn’t know why. I was having trouble getting her to feed on me so I asked the night nurse if we could bottle feed her and immediately Ruby turned blue. The nurses kept trying different tricks and told me they’d take her so I could sleep because I must have been a little hysterical that my baby couldn’t eat. Then at 3am, a nurse wakes me up and tells me Ruby has been taken to the NICU and been put on oxygen and a feeding tube. It all unfolded from there.  We were then moved to a level III NICU hospital because Ruby was more than they could handle.  We were there for 4 weeks and diagnosed with a Laryngeal Cleft, cataracts, tracheomalacia, hypotonia, Heart defects ASD, PDA and left ventriculations, also a thin corpus callosum. I was crushed. I didn’t want to see anyone or talk to anyone. I was a ball of emotions that would lose it any time another dr. came in to talk to me. To the point that they sent in two different people one therapist and one religious head to ask me if I needed to talk to anyone. I started to laugh at that because we live near both of our families and our religious community is so tight. I had offers and people helping out with the other kids left and right. Thank heavens because I needed to be with Ruby at the hospital. It had to have been so hard on my other kids who were 6,4 and 2 at the time.  I really wanted a clone of me to be at the hospital and at home all at the same time. The only reason I survived is because Nathan was with me that entire 4 weeks. He was able to take work off and his hilariousness and positivity is what got me through. I also think it bonded us in a different way than if he had missed out on dr.’s updates and getting to know Ruby. My first question was, “Why us?!?”  His simple response was, “Why not us?” He grounds me.  He was the light Ruby and I needed in that hospital room. There were so many nights we thought we’d lose her. I was scared and he knew it would be ok. I am sure he may have wanted to admit me to the loony bin a few times between then and now.

It’s still not easy.  We thought the first year would be the hardest.  Everyone kept telling us to just get through the first year. We jumped for joy when that first year hit (even though we were in the hospital for her 1st birthday), but interestingly enough, every year has been harder than the first.  The problem is not her immunity, but if she catches a cold, it goes straight to her lungs and turns into pneumonia requiring lots of oxygen and antibiotics and unfortunately hospital stays. She has had over 15 surgeries and we still are discovering things we need to do to “hopefully” help her improve her quality of life. But my outlook now is 100% different. We have her with us. We get to watch her grow and develop, even if it is slower and harder than my friends’ children. For a long time I mourned the loss of the normal life for her. I still do. I plead in my prayers for Heavenly Father to heal her. But who wouldn’t? I would cry at the thought of her future wedding, participating in sports or dance competitions, not being able to eat popcorn with friends at the movies. Now, I can just be hopeful. Heavenly Father is letting us raise her and I am grateful for how she’s blessed our family. We’ve done the most extensive genome testing there is and the results came in with nothing chromosomally wrong.  Ruby is complex, but she’s our complex and although we don’t seem to get the answers we want, we can’t deny the tender mercies that have come our way in the past two years on her behalf.

Miggy: Will you please educate us on Ruby’s multiple diagnosis and explain how her needs affect your and her day-to-day life?

Courtney: Like I said before, Ruby is complex. The main diagnois, if there is a main one, would be the cleft and the cataracts because one eye now battles glaucoma and probably will forever. She’s never had anything by mouth and had a g-tube placed at 6 months old. She’s had her cleft repaired 3 times. The first two times it just fell apart as if there were no surgery ever done. The 3rd time was a year ago this month and it was much more invasive. When it was repaired they put in a tracheostomy, which I was adamant about NOT getting, but we had a few months to think it over and decided it was the right thing to do. It was temporary, just to let the surgery heal. Well, it’s now long term temporary. What was to be 2 months has turned into at least 2 years. Her lungs and trachea are just not strong enough to carry the 02 needed when she gets sick. I truly believe that has saved her life more than once. BUT…it also makes life much more difficult. I can’t drive alone with her in the car and I honestly can’t leave her alone awake for more than a few minutes. She pulls it out. All of her little devices are toys for her to pull of and throw. It kind of stresses me out a little bit because with 3 other kids, there is a lot going on. Thank heavens for our amazing nurse who keeps me sane. It’s also hard not having alone time with Nate. We both crave it, but until recently it’s been impossible to even be able to date.  And it’s easy to say we’ll spend quality time together after the kids are down, but honestly we are both up so much during the night we crash as soon as that happens! And let’s be honest. Having a perfect marriage is hard, but it’s especially hard having a special needs child. There are so many things to come together on as well as our individual responsibilities and so many needs and wants that get ignored because there is just not time in the day or the extra energy to do them.

Miggy: What are the biggest worries you face for Ruby? And conversely, what are your hopes and dreams for Ruby?

Courtney: I spend a lot of time worrying about Ruby. I know I probably do more than Nate. I sometimes ask questions he doesn’t want to think about. We have no idea what the future holds.  She’s been tired a lot lately and now will go in for another surgery on Aug. 17 to repair the ASD.  The hope is that it’ll prevent so much fluid from getting into her lungs and give her a bit more energy. But no one really knows if it’ll work that way. She’s kind of her own little puzzle, but she’s amazing and she’s a fighter. The things she’s pulled herself out of and fought for are incredible. Once she started sitting up at about 18 months, she’s progressed so much! She is now working on weight bearing so she can eventually walk. She’s a strong little soul. They say their muscles are weak with hypotonia, but she is STRONG. She just doesn’t know how to use the muscles she has.  With her therapies she’s learning and she gets so excited when she figures things out! She does a little princess wave and expects a cheer every time she accomplishes something. It’s so cute! I do worry more as she gets older. We get a lot of stares right now. I worry I can’t always protect her from that. I worry people will make fun of her and hurt her feelings. That’s a worry with all of my children, but especially her because she has so much that sets her a part. She’s the happiest, most loveable soul and I don’t ever want her to lose that. My dream is that of course she’ll be healed…but that she’ll be able to experience life to it’s fullest. Maybe my fullest and her fullest are different, but I want no regrets.  I want her to do anything and everything she wants to do and it’s our goal to help her.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  

Courtney: I can’t tell you how many comments we laugh at. Most of them come from kids which are so endearing. I feel like adults should know better, but a lot of them don’t. A lot of people ask me if she can actually see out of her glasses. Which is hilarious because I want to say, “Can you see out of your glasses?” haha.

We had a friend’s little boy ask all about Ruby’s trach and then he finally concluded with, “Well, at least she’s not dead!”  I had to say, that’s a good point! I am glad she’s not dead!

She wears AFO’s to help give her support for standing up and I have had a few people say, “Those are interesting shoes, where did you get them?” They are always so shocked that they are customized to her feet.

I honestly know people aren’t trying to be mean. People do mean well, they just really don’t know what to ask. A woman at a park came up to me and asked me if she could ask me some questions and then asked me how she should teach her kids to ask questions. It was so refreshing, because I really do like to talk about Ruby!  I breathe this stuff in and out 24 hours a day!  Ask me anything!  The most refreshing questions come from kids.  They have no reservations and I love it.

Miggy: How can people best approach or respond to Ruby? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Courtney: I think what I have learned is to be friendly. Ruby is so loving. She blows kisses at everyone she sees that talks to her. She waves to them as they walk away.  I am so touched by people that talk to Ruby directly and ask questions because they really want to know!  Staring is hard. People know they are stared at. It’s not discreet and it’s hurtful and it doesn’t help inform at all. I am trying to teach my kids, as shy as they all are, that people want you to be friendly. No one wants to feel alone. It’s definitely gotten me out of my comfort zone. I am so much more aware of people around me and I am thankful for that.

Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey.  Is there anything you’d like to share about your other children and their relationship to Ruby?

Courtney: I could never have imagined the love Ruby’s siblings have for her. The second she enters the room, she has all the attention. There is not one ounce of malice or frustration for her.  And our time is not shared equally. Each of our kids have take turns showing us (usually by misbehaving or having outbursts) that someone needs more one on one time, and sometimes it’s more than we can give,  but overall, there is so much more compassion and love because of her.

Miggy: What is the biggest lesson you’ve learned since becoming Ruby’s mom?

Courtney: What haven’t I learned?  Haha. I have learned people are good. People want to help and they want to pray for Ruby. Ruby has touched so many hearts and we have been blessed so much by compassionate people. I have learned this life is not up to us. We can want and have desires, but it’s all in Heavenly Father’s plan and time frame. I have learned to have faith and know that we were trusted with this little girl. I have learned to trust lots of people to care for Ruby.  Sending her into surgery gets harder and harder as she gets older. They take her back to sedate her and I cry my eyes out. I know she’ll be taken care of, I know she is loved, but it’s hard. I have learned to be compassionate. Everyone has trials and life is hard. For a long time, and I still do occasionally, see kids Ruby’s age and wish she could run and play and talk like they do.  I don’t think I will ever have moments where I don’t wish that. But I am brought back and flooded with the little things she is doing. My love for her grows every minute of every day.  I often ask why she has to deal with all these things and why more and more complexities unveil themselves as time proceeds.  I may never know, but I do know she’s the cutest, happiest, most perfect little soul and she’s perfectly placed in our family.  

Thank you so much Courtney–and seriously there is something about that little Ruby, you can just see the light shining from her eyes! I love that you said, “I’ve learned that people are good.” YES. Somethings are really hard like stares and rude-isn questions from kids, but I remember being really worried about our interactions with the general public on a daily basis and was pleasantly surprised to see most people treat our little baby with kindness and smiles just like any other little baby. And I love hearing how amazingly great your husbands support was for you during those first daunting weeks. I really love that his response to your question of why us, was why not us? That’s life in a nutshell and really, aren’t we the lucky ones? Thanks again Courtney and give that sweet little Ruby-cakes a hug from me. Best of luck with her upcoming surgery!


As always you guys, if you or someone you know would make a great spotlight please email me–or if you know a friend please have them email me directly–at thislittlemiggy at gmail dot com.


Have a fantastic weekend!
XO
Migs