I am the mom to 4 amazing little angels. Three with special needs. I feel so lucky to be their mommy.
Nicholas is our oldest. He is 8 and will be in the 3rd grade. He is the greatest big brother. He is a typical child but does deal with a life threatening nut allergy.
Taevon is our oldest 6 year old. (by just a few months). We were lucky enough to be chosen as his forever family when he was 4 years old. ( July 2012) He is a survivor of Shaken Baby Syndrome. As a result of his abuse he has been diagnosed with Spastic Quadriplegic Cerebral Palsy, Epilepsy, high blood pressure, Microcephaly, scoliosis, Developmental delays, visual impairment, has a feeding tube, and is non verbal. He takes 5 meds twice a day and 1 med 3 times a day. He is the sweetest little boy He loves to be held and his smile melts my heart. He receives OT, PT and Speech. He is currently being home schooled due to coming home with a broken leg. Since no adult was able to tell me what happened we felt it was best for him to be at home where he is safe.
Keagan is our middle 6 year old. (a month older than our youngest) We were blessed when he joined our family at age 2. (September 2009) In two short years he dealt with physical abuse and neglect. He was moved from home to home and we were told he was showing signs of Reactive Attachment Disorder. Keag is the the funniest little boy. He is a loving and caring little boy and gives the best hugs. There are no signs of this disorder. He is dealing with Fetal Alcohol Syndrome and the effects of a stroke. He takes 1 med twice a day. We are also working to find out about a language and or processing disorder. We continue to work on his behaviors and are dealing with migraine headaches. He received speech and OT services until he was 4. He will be starting Kindergarten in the fall and he is very excited to ride the school bus.
Aaron is our youngest 6 year old by a month. We were overjoyed when he joined our family at the age of two. ( Nov 2009) Aaron has the most challenges. He was born addicted to meth and cocaine. He has Septo Optic Dysplasia which has left him blind, and diagnosed with Panhypopituitarism, Congenital Adrenal Hyperpalsia, Diabetes Insipidus, Hypoglycemia, low heart rate, and Global Developmental delays. He is nonverbal but is able to make his needs known! He has a cyst taking up most of his frontal lobe. He is also missing the corpus pedicullum and has hypoplasia of the corpus callosum. He was recently diagnosed with Lennox Gastaut Syndrome ( a rare and debilitating seizure disorder) that has caused some setbacks. He takes 8 meds twice a day. Aaron now has a feeding tube and no longer pulls up to furniture or takes steps. He has required numerous hospital stays and we have had some close calls with our sweet angel. He receives PT right now and is making some progress. I cherish every second with this sweet angel.
Although my schedule is crazy and I am lacking sleep I have never been happier. I am truly amazed at all that I have learned form these amazing little boys. Nicholas has taught me to love deeper and laugh harder, Taevon has taught me to just breathe and enjoy the little things. Keagan has taught me to never give up and Aaron has taught me not to take a second for granted. My house may always be scattered with toys and therapy equipment, my laundry pile may never seem to go down, the van will probably be "almost out of gas" daily, I will always do "MY" things ( like grocery shopping, ironing, cleaning and showering) after the kids are asleep, our time alone may be on the patio while my husband grills some hotdogs at 9 pm but I wouldn't change a thing. Sometimes it is crazy and I am exhausted but we make it work. The boys are happy and that is all that matters. They are only young once, I only have this one time to make memories and to make the most of our time together. I never want to take a moment for granted.
Even though I LOVE my life sometimes I do feel on the outside. I don't really know anyone else with special kids. Not everyone understands our lives or what we deal with on a daily basis. The boys average 6-7 dr appointments a month and three therapy appointments a week plus the after school activities, sports practices and games makes for a crazy schedule. I feel like I am always on the go and look forward to the days we are able to relax at home. I am struggling with the thought of in home nursing care. I am not a very trusting person and the thought of letting someone else do the meds for the boys is enough to send me over the edge. I do it all by myself. Sometimes I feel overwhelmed and it would be nice to have some help but in the end it is all about trust. It is hard to wake up in the morning and the first thought is do I hear Aaron? The initial feeling of fear as I open his door in the morning and he is quiet. That feeling when I see Taevon and he seems to be staring a little too long. Is he having a seizure how long has it been going on? And there is Keagan. I worry about him in school. He is so far behind and he tries so hard but it is very difficult for him. Will he make it in a typical classroom with all of the distractions? My sweet Nick. How hard it must be to have 3 brothers with unique needs. He is such a great kid and seems very well adjusted. I just never want him to feel lost in the all the organized chaos. I am so lucky because he is so interested in anything medical. He loves going to all of the appointments and learning about all of their diagnosis. The techs are always so nice to him and explain everything. One tech even let him help put on Aaron's leads for his EKG. Sometimes it would be nice to have a friend that truly understands the demands of my life. Packing up the kids to go to the park is like packing for a vacation :) With the wheelchairs, feeding pumps, suction machine and rescue meds, diapers, and extra clothes the van always looks like we are going away for days!! Even with all of the things going on I feel so blessed that these 4 little boys call me mommy. I look forward to seeing what else God has in store for our lives. He has given me more than I could have ever dreamed of for myself, and all in His perfect timing. I am truly blessed.
May 2014!! God is amazing! A year ago I never thought this would be possible! A family vacation with a healthy and happy Aaron!
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