oct. 31. 2012
i have been pondering a lot about me, as a mother, my children, and life. before we left on our trip, we had been to children’s hospital quite a bit, having madison tested a lot for different things that can come with having DiGeorge Syndrome. it’s a micro-deletion in her 22nd chromosome. it manifests itself different ways…heart issues, cleft lip or palette issues, learning disabilities, and the list is extensive. this denver children’s hospital has such an amazing 22q team, where you can see all specialists in one location. it’s been a blessing, but i think the anxiety and stress are below the surface of my skin, as the quite stressful beginning years of her life are very close in the forefront of my mind. taken from me at birth, because she wasn’t able to breathe, and they tube and bagged her so she wouldn’t die right after birth. open heart surgery at 7 days old, then they hit a nerve during heart surgery to her diaphragm, causing another surgery, c-pap machine in-between(horrible experience)!, then because the doctors wanted her tube fed to control her feedings in-between surgeries, she didn’t know how to eat through her mouth. we then had to have another surgery done for a nissen/g-tube, so she could be fed through a tube in her stomach, via a pouch that hung up on a rod like an i.v. we were finally able to bring madison home after 10 weeks of being in the hospital, since birth, but she wasn’t thriving, she was surviving. i was a nurse, 24/7, giving her meds and feedings, fighting to help my baby stay alive. she was born without an immune system, so jarom and i would take turns going to church, since a cold in her little body would last 6-7 weeks, and we wouldn’t be able to take her outside for that amount of time. she would get better for about a week, and get sick again. pt, ot, and speech were all throughout the week, as we had to teach her all instinctual things babies normally do on their own. just touching her cheek, she would gag, since she had only known pain from tubes being forced down her nose and mouth. so we started from square 1, and we worked our way in, and were blessed when she was 2, as we were trying to figure out if I should leave for 6 weeks with her to a feeding clinic, when she all of a sudden started eating one afternoon. i think the Lord knew, we were hanging from a thread feet below the end of our rope. we needed that, and have always been so grateful she was able and wanted to eat on her own.
the most amazing thing about this sweet spirit that has been sent to us, is her will to fight to be here, and her amazingly sweet and loving personality. she is such an amazing and wonderful part of our family, and we are truly blessed and grateful to have her here with us.
we have always treated her “normal,” never giving her any excuse to do any less than the rest of us. we expect her to work hard and be apart of this life and family in every way as the rest of us are. it’s definitely been a struggle for me, as her teacher though, as things just don’t seem to sink in sometimes. she has an amazing long term memory… we’ve memorized “The Living Christ”, the president’s of the united states, countries in north and south america and some of europe, but the short term memory isn’t so great. i’ve been teaching her time for probably five years, along with money. after having these tests done, we have seen and can now understand why. having 22q, memory and executive function and other abstract things aren’t as easy to work out as the rest of us.
i was so glad jarom was with me yesterday, as we met with the neuropsychologist, and as she went over all the test results. you wonder what your child will be able to accomplish in life, will she be happy, will she live a fulfilled life in her own eyes, and as a good friend put it, we all have our place in this life. i’m so grateful for the gospel, and the perspective it brings. it’s not how much education you have, how much money you have, it’s the heart you have, and this girl’s heart is pure love. she has blessed my life in so many ways, i can’t even believe it. she’s taught me so many life lessons through her just being here, that i’m so blessed to be her mother. life never turns out as we think it will or plan for it to be, but the Lord always knows what’s best for us, and i’m happy to hand it all to Him.