Those weeks of being pregnant with Arwen after finding out her diagnoses were awful to put it nicely. Just pure agony going through numerous tests, scans, blood work. The doctors basically pushing you to abort at any chance possible and making sure you know they will never have a high quality of life. Then I did the dumb mistake of googling myelomenigeocele spina bifida...ya we all know not to google lol. I then purchased every parent book spina bifida which I read on our trip to Canada which put a huge damper on our last trip before our lives changed forever. Despite how dark, scary, and unknowing that time was, I never doubted God had her in his ever faithful hands. The Holy Spirit guided my wandering heart back to the cross through every test, fear, and question. Richard was a rock for me and continues to be through each step of this journey and I am thankful The Lord continues to do a good work in his heart as the leader of our family. I would never want to go through this journey with anyone else by my side.
So we had 22 weeks to wait for Arwen's arrival after finding out her diagnoses. We went to weekly appointments which was hard on Adi and Noah to comprehend. We talked with them about it often and I don't think they got it till she was born. They did remarkably well adjusting to our crazy lifestyle when she was born. It was not easy juggling two kids at home, baby in hospital and then coming home with a new way of living. I honestly do not remember Arwen's first year very much due to lack of sleep lol, but we were at the hospital at least 20 times a month.
As most of you know she was born with strong leg movement, strong head control, no dorsal flexion as her feet curled up touching her shins almost, hydro. We didn't know much about her bowel and bladder control till she got older but figured it was compromised. She had her vp shunt put in when she was 9 days old and I praise God we have yet to have any malfunctions. But every headache, stomach flu like symptom, and being lethargic leads to the er with a possibility of it malfunctioning. Like most sb moms I have a love/hate relationship with the shunt. It took till she was 3 for the incision to fully heal,but her hair grew back fast and to this day you can't see it unless you really look. And she is quite skilled in the spina bifida glossary so she can school you on pretty much anything sb related haha.
It is still quite amazing to see how God has and continues to work in her little body. She has strong function but also has many unseen weak points to the naked eye. It is hard for me to hear as her mom oh she looks normal, there is nothing wrong, oh she hasn't outgrown that, she doesn't have anything wrong, ect. While in my eyes yes she is perfectly normal and I hate that term, I also get nervous on what these expectations will do to her as she gets older and can understand what people are saying and how she will feel when she knows she is different. I do not want her treated any differently or feels like her disability defines her,but want her to find her worth in Christ. I want her To know she was made with spina bifida for her joy and His glory.
As she is getting older and really grasping her differences in the every day world I must admit I fee like a fish out of water. I tend to worry about things that haven't even happened but feel like I need to be prepared. Richard is there to quickly bring me back to reality of trusting in God and to stop getting ahead of myself. The most recent reality fact is that she cannot control her bowels and bladder and has to be cathed 6x a day and use a daily enema to keep cleaned out. It takes time, effort,and patience to do this so many times a day and she is noticing how it would be easier to use the toilet like her siblings and friends. It is hard to explain to her in a way she truly grasps it but thankfully she is quick to recover from the disappointment. One day in the coming years she may choose to have elective surgery to help be more independent with her bladder and bowels but we want to wait till she is old enough to make those life changing decisions with us. Until then she is too small to learn much independence so I am sure the emotional road of incontinence will continue. The trip to Cincinnati was super helpful for helping her bowels, so we are forever thankful for all of you who helped make that possible.
She has undergone hundreds of tests, procedures, ailments, infections, but still keeps a smile on her beautiful precious face. She has also accomplished far more than we ever imagined and though the life of Spina bifida can mean that can disappear at any moment the faithfulness of Christ is never changing and is always and forever ours because of Christ's death on the cross.
Today she is a sassy, opinionated, cheerful, persistent, and bright toddler who brings so much joy to our lives. Our family would not be the same without her. We are truly blessed to be her parents. We rest in the hope that God has her life planned out to bring himself the glory and for our satisfaction in Him as she will continue to face many er trips, doctor appointments, surgeries, and the unknown .
To see previous blog posts on how Arwen has changed over the years feel free to visit the links below.
http://tinktut-kids.blogspot.com/2013/05/spina-bifida-through-eyes-of-our.html
http://tinktut-kids.blogspot.com/2012/09/spina-bifida-awareness-arwen-style.html
http://tinktut-kids.blogspot.com/2012/04/take-that-sb-clinic.html
http://tinktut-kids.blogspot.com/2012/01/winter-catch-up.html
To see previous blog posts on how Arwen has changed over the years feel free to visit the links below.
http://tinktut-kids.blogspot.com/2013/05/spina-bifida-through-eyes-of-our.html
http://tinktut-kids.blogspot.com/2012/09/spina-bifida-awareness-arwen-style.html
http://tinktut-kids.blogspot.com/2012/04/take-that-sb-clinic.html
http://tinktut-kids.blogspot.com/2012/01/winter-catch-up.html
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