Thursday, November 20, 2014

Blessings despite the trials

So this month is drawing to a close, and for some reason, it has been a really horrible month as far as unexpected trials. Not big things, just things that broke and had to be fixed right away so we could continue living in our house and drive our car. Our sliding door got stuck and had to be repaired, my car battery had to be replaced, the water heater stopped working and had to be fixed so we could have hot water, we had an outbreak of ants on multiple days, we had a problem with our sprinklers, and then yesterday we found out we need new health insurance for the kids by Dec. 1st. For some reason, we never got the letter in the mail, and now we are just finding out, and this means all the wonderful appointments I have lined up for Nathan next month, including his weekly speech therapy, are all in danger of being cancelled due to this problem. Add to this a bad cold for Nathan and my husband. So yes, I have a lot to complain about right now. But I'm not going to complain. I'm going to just take things day by day, and try to focus on more important matters, like my kids.

One blessing amongst the trials: Nathan has been attending his early start intervention class since the first week of November, and is doing so well. He gets to be in the cutest little class for three days a week, 3 hours each time, and I could not be more grateful. He is learning in this class, he is socializing, and he is progressing rapidly. And I, on the other hand, am discovering what it's like to do things without a toddler around, like shower, grocery shop, and just breathe for a little bit.

Another blessing: Blake turned 8, and he was able to have a super fun birthday party. He was able to attend cub scouts for the first time, and soon he will be baptized a member of the Church of Jesus Christ of Latter-day Saints. He is doing well in school, and in his piano lessons, and when I take the time to really listen to what he has to say, I am amazed by what a special, smart boy he has become. You know when you get too busy to really listen to your kids, and kind of just halfway agree or respond to what they blurt out at you? Easy to do. But just last night, I forced myself to be truly in the moment with him, not caring about all the other things pressing on me or stressing me out, and I listened to him read a book to me that he was excited about, and we talked about it, and it was like I was seeing a whole new side of him, like I was seeing my child again for the first time. Children really do bring so much joy to our lives.

And finally, the last blessing: Julianna went to the dentist twice this month to have cavities fixed. The first time, it was an easy one that didn't require a shot. But the one she had fixed today did require one, and I could not have been more proud of how she did. She sat still and kept her calm, but did somehow manage to bite the dentist's finger, which I'm sure he wasn't too happy about. And when it was all over, she started to cry a little, and it was because she didn't like the way her mouth felt. I've never had a cavity, so I don't know what it feels like to have my mouth numbed. So I can only imagine what it feels like to a child with autism and sensory issues. Despite it all, she did it! And this is after taking her to a more specialized dentist who said the only way to fix her teeth was to put her asleep because he worried about traumatizing her. This also came with a big price tag, which I did not want to pay right now. But more than that, I really believed in Julianna, and I knew that she could do it this time. I'm so glad I didn't give in to that dentist's demands, and trusted my own mother's intuition. Julianna even said she would have no problem doing it like this again. She's growing up and doing things I never thought she would, and that is a huge blessing.

Most days I am beyond worn out, emotionally and physically. Life just seems too hard most of the time, and I often find myself feeling negative or angry or just in a bad mood. But when I take time to think about the good things that so often get buried in the little trials, and focus on those, life isn't so hard anymore.

Wednesday, November 5, 2014

Guest Post: Landry and Willow

I met Kati on the Cleft Moms Support Group facebook page. She shared something that really touched me, and I knew she would be a great person to share her story. Read about her 5 children, particularly her youngest two; Landry, who was born with Optic Nerve Hypoplasia; and Willow, who was born with a unilateral cleft lip/palate.
So tell me about your children.
A mother of 5 kids, youd think I've seen and done it all.  Ha! My journey has only begun.  Let me introduce myself. My name is Kati, and I have 5 beautiful children. Garrett is my oldest at 14, then comes Michaela at 11 (she is my stepdaughter, but for all good reasons, she is my daughter). Dalton is next; he turned 9 in July. Now comes the babies: Landry is 2, and sweet Willow is almost 5 months.  Where our story starts, thats a WHOLE other tale. Where we start is in August of 2011.
What happened in 2011? What was your pregnancy like with Landry?

After grieving a miscarriage at 13 weeks of pregnancy in May of 2011, then a move, and also school starting up, I never would have guessed we would have gotten pregnant this quick.  Everything went perfect. Being over 35, it put me in the high risk category, but once we moved back to our original town, my OB/GYN took me back to a normal low risk. Landry was born 6lbs 6 oz with reddish brown hair and beautiful fair skin.  At 6 weeks old we noticed a difference in her eyes that concerned us. At 6 months she was diagnosed with Optic Nerve Hypoplasia. This means she is partially blind in her left eye only, and has perfect vision in her right eye. 
How is Landry doing now?
It has been a rolllercoaster of emotions for us, but we have maintained a mantra of  "it could be so much worse for her."  Does it slow her down? Not a single step.  I often get asked by strangers why she has glasses,  and I educate them the best I can.  It not only feeds my soul as a mom of a "special needs" kid but as a nurse also.  With both my "special needs" babies it does.

Tell us about your baby, Willow.
For my sweet Willow, her journey has just begun a new rollercoaster for us.  Willow was born with a unilateral cleft lip/palate. Her journey has already had some huge impacts on us, mainly because until the literal second she was born, we had no idea about her "disability." I personally do not see these as disabilities, in either of my angel girls. Don't get me wrong, it's by no means easy. But neither is parenting.  God has a great sense of humor when it comes to anything. I've come to discover that among other things in the last two years. Our schedules are filled with appointments some weeks and activities for the older kids, but mainly they are filled with us. Not the, "Oh my goodness, what's wrong with your baby??" But us, the who we are everyday us.
What are some stories you'd like to share about raising Landry?
I could share many stories that we have been through in the last two years with our babies.  But I'll share the ones that have had the biggest impact on our lives so far. We (my husband and I), were out grocery shopping for the first time with Landry since she had been diagnosed.  Her eye specialist recommended that we patch her "good" eye to help strengthen and possibly rebuild the pathways for her nerves in her eye. She was about 7 months old at this time. As we were standing in the checkout lane, two women walked up behind us. Landry was on my shoulder, furiously chewing on her hand, and one of the ladies remarked on what beautiful hair she already had, and began the usual conversations of small talk, asking how old she is, where did she get her beautiful hair, etc. The conversation then turns to, "What's wrong with her eye? Did she have surgery? Is she ok?"  My husband stands by patiently, as I fulfill my need to educate. Until this point, only one of the ladies is doing most of the talking. I wrap up what I usually tell people, and turn to walk away.  That's when I hear the words that NO PARENT should EVER have to hear.  "Oh, that poor baby, I wonder if they realize how retarded she will be. I feel so sorry for that baby." Needless to say I walked away with my husband by my side and beautiful baby in my arms, furious at the world. 
What about with Willow so far?

The other story I will share is the day Willow came into the world. I had a perfect pregnancy with her, too.  Again due to my age, we were considered "high risk." We went to a specialist, who, considering my health, thought it was a joke for me to be there, and cleared me for again a normal pregnancy.  I had discussed with my OB/GYN about whether to do an amniocentesis or not, only because there be something we needed to prepare for (like with Landry).  We opted out of doing the amnio, and instead we did blood work that would give us the exact same results but without the pain or risk of miscarriage. 
We found out at 13 weeks of pregnancy that we were having another girl. After about a 5 minute grieving period, only because we were trying for a boy, we picked out her name,  Willow. We couldn't have picked out a better name for her either. At that time we had NO CLUE, even with sonograms and blood work, that she was going to be born with a Unilateral Cleft Lip and Palate (UCLP). Again our pregnancy was perfect, and as with my other children, she had to be induced.  At 12:47 pm on June 10th, at a hefty 7lbs 0oz even, she was here.  At 12:55pm the delivery room was silent, except for her cries and the machines making noise. Everyone was in shock. None of us knew. My husband and I looked at each other and began to cry ourselves, out of fear, out of joy, out of pure loss of what to do next.  Our perfect baby wasn't as perfect as we dreamed she would be. Again we pulled our bootstraps up and pulled ourselves together.  
Our older children came up to the hospital later that evening to meet her for the first time. We weren't sure how to tell them, other than she just looks a little different.  The two oldest kids cried when they saw her. Landry, she climbed up on the bed with me, kissed me and kissed Willow and called her Awe Baby.  Our oldest child, Garrett, probably had the hardest time with it.  After we left the hospital and were at home, he asked me, "Momma, why did God give us these 'broken' babies? What did we do so wrong to deserve it?"  I looked at him and told him, "Son, these girls AREN'T broken, any more than you or I are broken. They were given to us by God because they are that special. They are going to help change the world."  No truer words have I ever spoken.

How has being a mom to Landry and Willow changed your life, and your view of motherhood?
These girls have changed MY world. They have become an inspiration to me to see the world as they do; to raise the awareness for their causes; to be an advocate for not just them but for ALL parents and children with "special needs."
I wand to share this last small story. In July we had my husband's family reunion. One of his favorite aunts was there. She hadn't seen Landry in two years. Landry was just about 9 weeks old when she saw her last.  Aunt P had been in an accident many years ago and it had left her very badly disfigured. I didn't know how well Landry would react to seeing her, and was concerned. She had also never been around any other babies, besides Willow and the older babies from daycare. My husband's cousin has a daughter about 6 months older than Landry, named Shae. I learned so much about myself that weekend and how my children perceive the world around them.  Landry bawled for days after the reunion because she wanted her Auntie P to stay and play with her and for Baby Shae to come home with us and be our baby too. My "one-eyed" daughter saw no difference between herself and Aunt P. She saw no difference between her baby sister and Baby Shae.  Like a child that sees no difference between the color of skin, which again, she saw NONE!!  
My girls and all my children are amazing. I am so privileged and blessed to be able to call them my babies, and for them to call me Momma. My heart swells with pride, even more so now than before when I look at them. They have taught me so much more than I could have ever imagined. Patience, kindness, respect for others' differences, and how to just be a better human being in general.  God made these babies special for a reason; our rollercoaster rides are just part of the fun. May God bless each of your families as you continue on your own rollercoasters.