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Friday, September 18, 2009

Katy got approved

We have been trying for years to get some help with Katy's care. There is a program called the Elderly and Disabled Medicaid Waiver program that I signed her up for. The first time they said she didn't qualify, but the second time I talked to a Social Worker who went to work to make it happen. Katy was approved this time. The program allows medically fragile people to remain in their own homes being cared for by their own families by providing help to make it easier on the family. When families can't do it anymore the people are put into expensive institutional care, which ends up costing more and no one is happy with the situation. These programs ensure that people with disabilities have choices for their own residence and daily care needs. I was very hesitant to sign up for this program even though it would be a big help because I would have to have a stranger come into my home and care for my medically fragile child or so I thought. Turns out that I can choose my caregiver if they can get hired by the agency chosen to provide the services. Tara, my sister needed a job so I referred her to be hired and they hired her. She comes each afternoon and helps with keeping Katy's room, bathroom and play room clean as well as changing her bed linens and washing her clothes. She gives her her bath, lays out her clothes for the next day and plays with her. She also provides respite care 4 hours per week. Respite care is a sitter so we can spend time with other children or go out and have fun without worrying. I get to focus on Sean and J.D. and know Katy is well cared for. The social worker called yesterday and asked how it was going. I said, "Well I don't feel like I am so busy I can't breathe anymore."

Thursday, September 17, 2009

What it means to me to be a caregiver

I am a wife and mother. I have 3 children; they are my life. Caregiving is not a job, it is not a mandate, it is a calling. I was an everyday kind of lady before I became a mother. Even when I had my first child I never suspected I would be called a caregiver, a mother yes. I watched that precious baby and knew he was all that mattered anymore. Little did I know what that would really come to mean to me as time passed.

Then I had a beautiful baby girl and as soon as she was born it became apparent that God had called me to be a caregiver. She was born with disabilities. She was whisked away to a hospital 2 hours away and all I could do was cry and ask God, "Why my precious baby?"

I soon joined her in the NICU at Children's Hospital. I knew she was in good hands, but I was her mommy and she needed me. When I saw her tiny little body in that isolette with tubes and wires everywhere, I wondered how I was going to "mother" her in this environment. I was there every minute they would allow me there. She had test after test after test. They still, 6 years later, don't know why she faces the challenges she does. It felt as though she was not mine at times. I felt so removed from her, she seemed so fragile, but I LOVED her with a mother bear kind of love.

She finally came home from the hospital about a month later and we settled in. Things did not get easier, I worried about her every minute of the day. We had so little information about her condition, just fragments of a still unsolved puzzle. We really didn't know if she would survive. She absolutely detested feedings and would scream and refuse and as a result did not grow well. She turned blue a time or two and scared the life out of me. My husband and I were so exhausted from the night feedings and the stress of a special needs baby. We couldn't reach out for help because no one seemed to understand how to help. That first year is quite the blur. My beautiful daughter had 76 doctor appointments in a city 2 hours away from home that first year. Our finances were terrible and our debt was soaring. My husband and I made a commitment to keep the connection that had created these beautiful children. We actually grew stronger through it, although it didn't feel like it at the time.

Then out of the blue it seemed, I began to notice that my oldest son was not progressing as he should. I searched frantically for answers and came to the conclusion that he had autism. I asked his doctor about it and was told that after all we had been through that he was probably just having a hard time adjusting to life with a special needs sibling. I knew in my heart he was wrong and self referred to the early intervention program for both children. We took my daughter to the neurologist who was following her for a bleed in the brain during the neonatal period and the doctor asked if we had my son evaluated for autism yet. I knew then that I had been right all along. That doctor diagnosed my son and we got him the help he really needed.

My daughter's feeding completely dominated the whole household all the time. Then I went to her pediatrician's office for her 9 month check up in tears. I calmly explained that my baby needed a feeding tube right away. I had given it my best shot, but I just couldn't force her kicking and screaming anymore just to get enough food into her to keep her hydrated. She had stopped growing and I just didn't know what else to do. The day that she got her feeding tube was the first time that she smiled at me. She was 10 months old and had smiled at her daddy and her granny, but not me. She smiled at me that day and I will tell you that was the very moment when I just went head over heals for her. It was as if she said, "thank you mommy, this is just what I needed."

We went on for a long time running from doctor to doctor, tube feeding after tube feeding. She was so developmentally delayed and was falling farther and farther behind. I was sad for her, but also loved her just the way she was. There is nothing on earth that is more joyous than this little girl's laugh. She has fought hard for every milestone and is happy through it all.

I had my 3rd child(a son) when my daughter was almost three years old. She was in a wheelchair, completely dependent. My oldest son(4 years old at the time) was making progress, but still quite the challenge to care for. I was so busy I didn't have time to think or breathe, but my joy was complete. My youngest son is so compassionate, so giving. My youngest son taught his big sister how to walk and his big brother his first words since he stopped talking at 18 months old.

My children, all three of them, have taught me lessons that I would never have learned if I had not earned the title caregiver. Those who never earn the title cannot fully understand the joy, the pain, the laughter, the strength. This is the hardest work one can imagine, but also brings joy beyond measure. To see one smile from a little girl who has faced so much in her life is something beyond explanation. To see a little boy who tries so hard to accomplish things that seem to come natural to the rest of the world is a pride that transcends circumstances.

During those first few months of my daughter's life I prayed and prayed for God to heal her. My husband was praying the same prayers each day. We both over the course of time came to the same conclusion that it wasn't my daughter who needed healing. She was exactly who God had planned her to be. It was me that needed healing. It is often said that "God will never give you more than you can handle." Before I became a caregiver I believed that. Now I have been led into the realization that He does in fact give us more than we can handle so that we can learn to give it back to Him. We have to get past our own ideals and get into the fact that it really isn't about who we are, but how we love. If I had to choose I would choose this life all over again. It is all worth it to see these precious children learn and grow.