I promise to *try* not to write an entire novel here... no promises. Today we had our IFSP (indiv. family service plan) meeting for Abby. It has been one year since she started EI (early intervention) meaning she has been in PT for a year and a half (we did private PT before EI). We met with our physical therapist (Yemi), social worker and service coordinator. The OT couldn't make it. We talked a lot about her goals for this year. Her progress. The news we got this week from the neurogeneticist. The more I talked the more sad I felt. As we discussed hoping my daughter will walk someday without a walker (which is looking like more of a maybe than a definite), ramps, rails for the new house, walkers, long term needs and therapy I just wanted to cry. I know we can handle it. I know Abby will easily outshine the limits they put on her. That being said have you any idea what it is like to have someone (for the second time) tell you your kid won't be "NORMAL"? My daughter probably won't play soccer or walk normally. She will get made fun of. She will hate me at least once in her life for making her do PT, OT, etc (as we now know this is something we will be doing for years).
We survived the day when we were told, at only the halfway point of my pregnancy, that one of our daughters might not make it and if she did she would never walk or talk. We survived watching her miss almost every milestone a child should reach. We survived being told she needed surgery. We survived being told that her brain was not formed properly and would impact the rest of her life. We survived this past week when we were told that things in her brain looked worse than we thought. Surviving sure isn't the same as enjoying. Every day is a struggle. As struggle to fit everything in. The endless therapies, appointments, meetings, assessments, hospital visits and tests. Dealing with the needs of not one special needs child but two. Gracie is now dealing with her own set of ST, OT & sensory issues.
Thank the good Lord above that my daughters can think. They can love. They can laugh. They can talk (well... eventually for one of them). They are cognitively perfect, ahead of the game in fact. I am lucky. I know this. But it is still hard.
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4 comments:
I'm so sorry, my friend. I can't imagine the thoughts running through your head right now.
Abby will make it. She won't let the rude remarks bother her. She will live her life to the fullest and be an asset to everyone who she graces with her friendship.
All kids will hate their parents. All you can do is hope that at some point she will understand that your love for her is what drives you to make her do the PT/OT and everything else. You're doing this to benefit her, not you.
But it is still very hard. You are one of the strongest women I know and I know that you'll make it through this. Take it one appointment at a time and remember that there is a reason why Abby was blessed to have you as her mom.
Huge hugs and much love from Idaho.
*biggest hugs*
Wendy
Yea, cognitive is key. That, in my opinion, is the key to a happy and productive life.
I always have trouble with the IFSP meetings too. I just hate hearing out loud what I know to be true. It just makes it more "real." Sometimes I like to leave things unsaid. I always cry. Every single time.
Thinking about the rest of their lives is also hard. I understand. Truly, I do. But, the truth is that they will tell you what they need to learn next, and you should NEVER listen to a DR tell you what your child "may never" do, because how does anyone really know? No one knows how the brain works. I am lucky in that I have NEVER heard the "may never" comment, even though I am pretty clear on the "may nevers" it still hurts to hear it. Plus, I refuse to believe it. I would like nothing better than Cici to prove her drs RIGHT - that she is capable of amazing things.
I expect Cici to run marathons. Not really, but if anyone thinks otherwise then I don't want them around. Because if we expect them to do less than their full potential, then they will.
We also have PT/OT/Speech/Vision therapy and are dealing with a lot sensory-wise too. For my other kids, therapy is fun playtime, even if it's meant for Cici! I hope your girls will think of it the same way some day.
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