My First Year as a Special Needs Mom
I've been hesitant to take the title of "Special Needs Mom" this past year. Maybe because we CHOSE to adopt a severely disabled child or because for many months, Judah's behavior was somewhat age-appropriate and it wasn't obvious to anyone else that he was disabled. I haven't walked the path of many mamas who have to constantly fight with their insurance company or advocate for therapy or special equipment or spend weeks in the hospital. I am so thankful for that, because honestly, I don't know how we would have managed with our 7 older children. When God called us to this, I didn't know what it would look like, I just trusted that He would work it all out and He most definitely has.
Currently, Judah is weighing around 13 pounds at 15 months old. He has 4 teeth and working on a few more. His diet will consist solely of formula until he is 2. His new specialty feeding bottles are great and he averages 5-6oz each feeding when he's not teething. His medication for his hypertonia is still working beautifully. I love watching him stretch his legs out all the time now. He has many seizures everyday, but they don't seem to bother him at all and we are thankful. His VP shunt has not malfunctioned in over 6 months, praise God! We have been with a new pediatric hospice for a couple months now and are so thankful for them. It is so reassuring to have someone knowledgeable come out to the house every week.
I have many people who have asked about a feeding tube and after much prayer and speaking with two neurologists, we are not planning on doing that. Because of Judah's diagnosis (hydranencephaly), we feel that the Lord does not want any additional medical interventions to lengthen his life. If the Lord wants him to live, He will enable him to do so. He has already shown His sovereignty many times in Judah's life as He has rescued him from death's doorstep. We completely trust Him and if He leads us down another path, we will obey then too.
One thing that I'm getting used to is how people react - or don't react - to him. I've been blown away by those who hold him and lavish love on him every chance they get. I'm also often surprised by people in our life who pretend he's not in my arms when we're having a conversation. They don't look at him, touch him or ask to hold him. I didn't realize that because of their discomfort or ignorance about his condition, that he would be "invisible" to many. I didn't realize how much that would break my heart. He is so lovable and such a blessing from the Lord, I guess I will have to make peace with the fact that it is their loss.
Currently, Judah is weighing around 13 pounds at 15 months old. He has 4 teeth and working on a few more. His diet will consist solely of formula until he is 2. His new specialty feeding bottles are great and he averages 5-6oz each feeding when he's not teething. His medication for his hypertonia is still working beautifully. I love watching him stretch his legs out all the time now. He has many seizures everyday, but they don't seem to bother him at all and we are thankful. His VP shunt has not malfunctioned in over 6 months, praise God! We have been with a new pediatric hospice for a couple months now and are so thankful for them. It is so reassuring to have someone knowledgeable come out to the house every week.
I have many people who have asked about a feeding tube and after much prayer and speaking with two neurologists, we are not planning on doing that. Because of Judah's diagnosis (hydranencephaly), we feel that the Lord does not want any additional medical interventions to lengthen his life. If the Lord wants him to live, He will enable him to do so. He has already shown His sovereignty many times in Judah's life as He has rescued him from death's doorstep. We completely trust Him and if He leads us down another path, we will obey then too.
One thing that I'm getting used to is how people react - or don't react - to him. I've been blown away by those who hold him and lavish love on him every chance they get. I'm also often surprised by people in our life who pretend he's not in my arms when we're having a conversation. They don't look at him, touch him or ask to hold him. I didn't realize that because of their discomfort or ignorance about his condition, that he would be "invisible" to many. I didn't realize how much that would break my heart. He is so lovable and such a blessing from the Lord, I guess I will have to make peace with the fact that it is their loss.
